Tuesday, November 15, 2011

Strike Three

After a few days of some fairly minor headaches I had the audacity to start to think that maybe I was getting better!  Then the weekend hit.  Two of the worst migraines I've ever had in my life and they lasted nearly all day long.  (Saturday I made the mistake of trying the Amerge.) Monday was another pretty bad one.  So I called Dr. Digre's office and left a message for her or her nurse.  "Please give me something other than a triptan.  The Amerge was awful."
Dr. Digre seems to have no interest in returning my call.   I guess if I'm not in her office where she can take more money from me she doesn't want to help me.
Oh, but she doesn't really want to see me anymore either.
I received a copy of the letter she sent to each of my current doctors regarding her findings, diagnoses, recommendations, etc.  It was pretty thorough, I'll give her that.  But I found it interesting that when she's listing the things that make my headaches worse or trigger my headaches she keeps leaving out smells - even though I told her and her PA REPEATEDLY that smells bother me even more than lights.
Also, one of the meds that she recommended I try in the future is an anti-nausea medication - even though I told her and her PA repeatedly that I do not experience nausea with my migraines.

I guess its pretty obvious that I am not at all impressed.

Amerge

Dr Digre was wrong.  Amerge was horrible.  It worked like all the other triptans I had ever taken.

Strike 2 Dr. Digre

Special Brain

Remember the doctor that snubbed me several months ago?  Like 10 months ago, actually?  Well, end of October I get a letter in the mail saying she has reviewed my file and she'd be happy to see me.  In addition to the letter is 10 pages of paperwork asking for nearly every detail of my life regarding headaches and other health issues.  I sort of wanted to say, "please see my blog".  Maybe I should have referred to my blog myself as I was filling out the paperwork - it may have saved me a headache.  Ok, not really!  Seriously though, I got the paperwork during the week of hell and if I hadn't had a migraine already it definitely would have given me one.  Talk about DETAILED!  But I felt confident that I was to be seeing a doctor, referred to by many as the best headache doctor around, and that she wanted such specifics.   So I filled out the paperwork as best as I could given that some of the information was regarding my very first headache ever and also considering the fact that I was in the moment suffering from a migraine.  (I have a hard time concentrating and thinking straight when I'm suffering from a migraine.)
A few days later I get a call for an appointment.  I should plan on 2-3 hours for this appointment.  WOW!  Ok.
Next day I'm in the doctor's office.  Medical Assistant took a semi-detailed family and medical history from me.  The typical things I'd been asked at virtually every other doctor's appointment, but a little more as well.
Then comes in the PA.  He's a pain specialist, I'm told.  He asks me to tell him my entire life story.  The headache you had a age 12 - how long did it last, where did it hurt, how did it hurt.  HOLY CRAP!  I don't remember - I was 12!  We're talking 12 years ago!  =)
He wanted dates I started medications, dates I ended medications, exactly what every headache felt like.  (Most of this was included in the paperwork I had submitted.)  So I spent a good 40 minutes with him going over everything.
Then comes the doctor.  She rehashes a bit of what I had already told the PA, the MA, and put in the paperwork. She tells me a lot of what I already knew and a little of what I didn't.
She puts me on a preventative medication, Corgard, or Nadalol is the generic.  It's a beta blocker, like the Verapamil I took many years ago, she explains.  Since Verapamil worked for a least a few years, I seem to respond to beta blockers, she says.  (I later discover that Verapamil is NOT a beta blocker, it's a calcium channel blocker.) Then she wants to prescribe an abortive.  Amerge, it's a triptan, like Imitrex and Zomig.  I explain to her that I can't take triptans, that they give me an even worse headache than the migraine (if you can possibly imagine that!)  She assures me that Amerge works differently than those others.  It's less aggressive, starts out slow and builds.  Ok, you're the "expert".
I have a family history of migraines.  Despite the fact that my mother has never really had a headache and certainly nothing severe.  My father had one migraine that he can recall - that starts the family history.  My brother has what he calls "sinus headaches".  But Dr Digre tells me that 9 out of 10 "sinus headaches" are migraines.  That actually, they've done several studies and found that nearly everyone who complained of a "sinus headache" was in fact suffering from a migraine.  (I've been telling my brother for years that he's having migraines and not sinus headaches.)  And just recently my niece was diagnosed with migraines.  So there you go.
What she tells me that is somewhat new is that people with Chronic Daily Headaches and Chronic Migraines have what she called a "special brain".  This special brain is genetic.  (Watch out DarRell and Katie - you have special brains too!)  Good thing I don't have to worry about passing on my "special brain" to any offspring.  The special brain has a hyperactive headache center and is extremely sensitive to smell, light, sound, barometric pressure, temperature, weather, changes in mood, hormones, tension and stress, etc.  Any and all of these things can trigger a migraine, and quite easily because my nervous system is also hyperactive.  So the interesting thing she tells me with regards to all of this is that I was predisposed genetically to all of this crap and some sort of childhood trauma is what pushed me over the edge.
Another thing she tells me is that people with this "special brain" are also much more susceptible to depression, polycistic ovarian syndrome, irritable bowel syndrome, (and a few others I don't remember because I've never been diagnosed with them or heard of them before).

My siblings have often teased me about being "special" and now a doctor has just confirmed it.

Also, she asked me to get glasses with a very special tint that will help block out fluorescent light.  They'll be here in 4-6 weeks.  I'll keep you posted.

Thursday, October 27, 2011

Update

Ok, so it's been quite some time since I last posted so I wanted to get an update out there.

Update : Nothing is working!

Ozone didn't help, Botox didn't help, new diet is doing wonders for my tummy problems (and I lost 10 lbs almost instantly), but isn't doing anything at all for my head.

Got a prescription for a new headache medication to be taken at the onset of a migraine - just like every other medication it's inconsistent.

I got lucky in the beginning of October, after 3 full months of some sort of headache every single day  I actually had 5 days virtually headache free. But then my luck wore out.  Since October 17 I've had a severe headache or migraine every single day.  Nothing was even taking the edge off the pain, let alone getting rid of the headache so I gave in and called the neurologist again.  They wanted to put me on a 6 day treatment of steroids as a way to try and break my current cycle.  Also wanted me to come in for the second round of Botox injections.  She said that people find the second series to be more effective than the first.  So back to the needle.

I've finished the steroid and haven't noticed any change.

I've been getting occasional massages - doctor's orders, remember?  =)  I went to one last week who is referred to in her office as the "headache specialist".  She worked on my neck for quite a while and then told me she wanted to try craniosacral massage on me next time.  She said that at least one of my vertebra is causing me problems.  So I scheduled that with her for a later time.

Decided to try another thing as well .... chiropractor.   If there is something wrong with my spine then that's where I need to be.  And at this point, he can't possibly hurt me.  Because I've had some bad experiences with chiropractors I needed someone I trust.  My anatomy instructor is a chiropractor so I went to see him.  Interestingly enough, he also told me that one of my vertebra is out of alignment - and said the same one that the massage therapist said.  Do I think he can completely cure me?  Of course not.  Headaches are complicated - it's what every single doctor tells me.  But maybe he can get me through the next couple of weeks.

Friday, July 29, 2011

Ozone Injections

Went for my follow-up with the handsome D.O. yesterday.  Had a serious headache when I went in to his office so I asked for manipulation.  (Knowledge of and ability to do manipulation is the biggest reason I wanted to go to a D.O.)  Didn't get manipulated.  But I did get another form of treatment that was unexpected.

I could happily report to the doctor that most everything else was much better.  But the headaches - no go - maybe worse.  I mean, July was worse than June.  If this is a trend, I dread August and don't know how I'll live through September.  He said that headaches are the last symptom to go away.  And he wanted to give me a bit of a kickstart or something to try and break the headache cycle.  He wanted to try ozone shots into specific trigger points in the muscles of my neck and shoulders. 
(Now, for those of you completely opposed to me injecting toxins or poisons into my body, go ahead and freak out and get on your high horse or your soapbox or whatever and rant - because ozone is considered toxic or poisonous.)  My post right before this one is a copy & paste of an ozone therapy case study (or rather many) so feel free to puruse it if you want to know more.  It isn't specifically about migraines or headaches, just pain in general.  There's a lot of useful information. 

Let me say that I knew, before ever going to him, that he performed ozone treatments.  And I had done my research about ozone treatment.  While I couldn't find much information on how exactly it is used to treat headaches, I was able to find enough information to learn that it is not widely used in the United States, but is hugely popular in Europe and many other parts of the world.  I spoke with Dr. Porter a little about it's rarity here and he said that there are only 400 doctors in all of the U.S.A. that do ozone treatments.  (As I understand, Dr. Porter is the only doctor in Utah who performs this treatment.)  But in Germany alone there are over 4000 doctors.  He said that it will never be mainstream in the U.S.A. because it is not profitable.  A big pharma company cannot patent ozone and charge exorbitant amounts of money to the sick and suffering for this sometimes miraculous treatment.  (Ok, I'll get off my soapbox now.)

As he was giving me the shots he would tell me what I could expect to experience with each shot.  Then he said, "I know this, because I've had ozone shots, too.  I used to have horrible headaches."
"Used to?"  I asked
"Used to." he confirmed
"That's comforting to me," I told him
He told me he was on topomax for years. 

I've had a good feeling about him all along, but to think I just found a doctor who has experienced what I am experiencing and who has cured himself - well, like I told him, that's very comforting to me.

So about the ozone shots.  He finds trigger points within the muscles to do the injection.  In my case it was my occipital, levator, and trapezius muslces.  First he injected a solution full of all kinds of nutrients and vitamins and medicine, the few I remember him telling me are folic acid, vitamin B, lidocaine and another 'caine.  Then he injected the ozone gas.  The needle seemed huge.  I remember thinking when I saw it that it appeared to be the same size as a needle used to take blood.  As he pushed on my muscles he said he could feel where the botox had been injected and was working, but obviously there were many places where I did not get a botox injection and those points were painful when touched.  That's where the ozone was injected, deep into those muscles.  The sensation was strange.  Mildly painful, but mostly strange.  When he got to the occipital muscle – wow!  Weird!  First of all, the needle goes so far in that it hits my skull.  It’s not painful, but I can feel the needle scratching against that thin flat bone and I can hear it inside my head.  And when the gas goes in, I can hear the gas dissipating through my head.  I guess I’m a bit of an airhead now as a result of this procedure.  When he had finished he asked how I felt.  I said, “Everything feels tight”.  He said, “It should, we just inflated your muscles.” 
He had me move my head around and stretch my neck a little.  As I moved I could feel and hear the gas moving around.  It is truly wild.

The injection sites are very tender and the muscles that were injected are very sore and stiff.  In many places when I push on the muscles they feel almost spongy.  And I can feel the gas bubbles moving.  I had Justin push on one spot – it sort of grossed him out to feel it.  I think it’s all fascinating. 

The doc said that I can have more injections in as little as a week.  He said that sometimes we hit the big ones and then notice there are a bunch of others that weren’t as evident due to the bigger sites.  I’ll keep you all posted.


Side note:  The diet is going ok.  It's very difficult to stick to, but I definitely notice when I eat things I shouldn't - corn, wheat, & sugar primarily (I guess because those are the three I cheat with the most.)

Ozone Info

This is a whole lot of information regarding a few ways that ozone therapy or ozone treatment is being used.  It's incredibly useful info, if you actually give a damn.  But if you don't .... please feel free to skip this massive post.

CRPS, Complex Regional Pain Syndrome also known as RSD, Reflex Sympathetic Dystrophy has been a dilemma for all doctors and especially surgeons since it was identified. Often occurring shortly after surgery, or following an injury, this severely painful condition has perplexed the medical profession both as to cause and effective treatment. Coderre, T.J., that Foisie, in 1947, may have been somewhat correct in suggesting that arterial vasospasms were the key etiological cause. His research proposes that a “slow-flow/no-reflow phenomenon in the capillaries initiates and maintains deep-tissue ischemia and inflammation” as the leading cause. Goebal,A., et al. and others suggest that “autoantibodies directed against peripheral nerves” particularly IgG autoantibodies. Tan, EC., et al., and others suggest that venous oxygen saturation is greatly increased “corresponding with impaired oxygen diffusion” and “mitochondrial dysfunction”. All this is very interesting but how to fix the problem has been a mystery until now.

Until now the main treatment has been pain management, which has proven only moderately effective. In recent years Hyperbaric Oxygen Therapy (HBO a.k.a. HBO2 a.k.a. HBOT) has been used with some success. Research findings by MZ Kiralp,Yildiz, D Vural et al. and others suggest that it is a somewhat effective and well tolerated approach to decreasing pain and edema and increasing the range of motion in CRPS due to possible better oxygenation of the tissues. While this method has had minimal beneficial results, it suggests why Direct Intravenous Ozone Therapy (DIV) could work, as HBOT creates many of the same radicals in the blood as medical grade ozone by compressing the oxygen in the blood under several atmospheres of pressure.

This debilitating and disabling condition affects thousands of people every year often leading to lawsuits against surgeons when it is acquired as a post-op complication. The most important symptom is intense, continuous pain dramatically out of proportion, which worsens over time. Frequently the pain will spread to include an entire foot and leg or hand and arm and may encompass one side or the entire body. I have been unable to find any research published using intravenous ozone therapy for the treatment of this condition.

Direct Intravenous Ozone Therapy (DIV) has been used for the past 70 years, in over 36 countries by over 36,000 physicians worldwide. While there are hundreds of research studies worldwide they are published in foreign language medical journals, predominately German, Russian, Polish, Spanish and Italian. Searching on our National Library of Medicine (http://www.pubmed.gov/) for “intravenous ozone therapy” reveals only a small number of these studies that have been translated and in many areas of medicine. Many of these studies pertain directly to podiatry, particularly on diabetic peripheral vascular disease and ulcers.

Ozone gas is a trivalent oxygen molecule lacking an electron. Its’ main mechanism of action is to “steal” an electron from any molecule that cannot defend itself against such an attack. This causes a severe disruption in the atomic field of the molecule attacked followed by its destruction. This is the case for all viruses, bacteria, fungus, yeast and molds. Unless the organism was manufactured in a military laboratory to be resistant to oxidation, all pathologic organisms, including mutated ones, will be destroyed. In addition, ozone will chelate all metals from the body, including lead, mercury, aluminum, arsenic, etc., extracting them from blood, cells and off all nerve tissue. Here ozone will transform the metals into oxides, which the body can eliminate usually through urine, which can be measured. Ozone will also, very importantly make red blood cells flow with less viscosity as well as become more flexible to flow through narrowed or clogged arteries.

Healthy cells in the human body, on the other hand, can manufacture large amounts of glutathione peroxidase, superoxide dismutase, catalase and reductase, so called “antioxidants” which protect them against attack by ozone molecules which will try to enter via the “peroxide pump” mechanism. This explains why there is such an extremely low incidence of adverse reactions. Jacobs, M. in 1982 published a study in Germany, in which there was an incidence of only .00007% adverse reaction rate in over 385,000 people treated. Bocci,V. explains that while ozone forms Reactive Oxygen Species (ROS) they are short lived and thus different from the ROS’s that are continually attacking and harming our body. Bocci, V. says “In contrast to the dogma that “ozone is always toxic” three decades of clinical experience, although mostly acquired in private clinics in millions of patients, have shown that ozone can act as a disinfectant, an oxygen donor, an immunomodulator, a paradoxical inducer of antioxident enzymes, a metabolic enhancer, an inducer of endothelial nitric oxide synthase and possibly an activator of stem cells with consequent neovascularization and tissue reconstruction”.

If DIV works on controlling or eliminating CRPS it would seem that the cause of CRPS, in at least some if not all cases, is viral, bacterial, fungal/yeast or toxic metal attacking nerve tissue causing the symptoms, in addition, possibbly to micro-circulatory disturbances as this is what Ozone therapy mainly effects. How this may occur will be discussed later. Permanent nerve damage also has to be considered as well as slowing or stopping progression of the condition.

Since January 1990 we have performed over 155,000 intravenous ozone therapies. 45,000 Major Auto-Hemotherapies (MAH), and 105,000 DIV’s. We have found that MAH may improve many diseases and conditions but it rarely eliminates them. DIV apparently has the empowerment to do what MAH cannot and do it consistently. It is also safer, easier to administrate and takes only a few minutes.

Beginning in July, 1994 we have focused our research solely on DIV and have developed our own extremely assertive protocols. Frequency of treatment at a minimum of three times to as much as twelve times a week; accurate concentration of medical grade ozone usually at 55mcg per cc to a low of 42mcg per cc; given at rates of one cc per 5 to 15 seconds using 25gauge butterfly needles. It is necessary to adjust these parameters and modulate all of the above to avoid Jarrisch-Herksheimer (kill-off) reactions as well as damage to veins.

All patients are told to consume up to a gallon of purified water and other healthy liquids combined daily as well as Vitamin C taken five to six times a day (every two hours) in doses to bowel tolerance in addition to special probiotics once daily.

The Reflex Sympathetic Dystrophy Association (on their website) suggests the following:
Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is a chronic neurological syndrome characterized by:
Severe burning pain
Pathological changes in bone and skin
Excessive sweating
Tissue swelling
Extreme sensitivity to touch
There are Two Types of CRPS - Type I and Type II
CRPS Type I (also referred to as RSD) - cases in which the nerve injury cannot be immediately identified
CRPS Type II (also referred to as Causalgia) - cases in which a distinct "major" nerve injury has occurred
CRPS is best described in terms of an injury to a nerve or soft tissue (e.g. broken bone) that does not follow the normal healing path
CRPS development does not appear to depend on the magnitude of the injury. The sympathetic nervous system seems to assume an abnormal function after an injury.
Since there is no single laboratory test to diagnose CRPS, the physician must assess and document both subjective complaints (medical history) and, if present, objective findings (physical examination).

Criteria for Diagnosing Complex Regional Pain Syndrome Type I (RSD)
The presence of an initiating noxious event, or a cause of immobilization
Continuing pain, allodynia, or hyperalgesia with which the pain is disproportionate to any inciting event
Evidence at some time of edema, changes in skin blood flow (skin color changes, skin temperature changes more than 1.1°C difference from the homologous body part), or abnormal sudomotor activity in the region of the pain
This diagnosis is excluded by the existence of conditions that would otherwise account for the degree of pain and dysfunction

Shortly after appearing as a guest on an Internet radio show that focuses on Reflex Sympathetic Dystrophy (RSD) a.k.a. Complex Regional Pain Syndrome (CRPS) and not knowing if DIV would help as it has with other peripheral neuropathies, it was suggested that the host, Trudy Thomas, would recommend a patient who I would treat for free as part of my independent research in DIV.

Case Study One

Mrs. D. S. arrived at my office with her husband on August 18, 2010. D. S. is a 39 year old, 5’10 ½”, 280lb. female with a chief complaint of RSD for over 4 years which started post-op hammertoe surgery left foot over 4 years ago. She had undergone many years of traditional care at pain clinics with minimal success.

She complained of burning and shooting pain starting in her toes “that shoots” up her left foot and leg. In addition she complained of painful, arthritic-like hammertoes; severe muscle spasms in her feet, legs, back and shoulders; back pain; spinal stenosis and Degenerative Disk Syndrome effecting C-5, C-8, L-4, L-5 and S-1; Fibromyalgia throughout her body; Myofascial Pain Syndrome; polycystic ovaries; hypertension; and chronic constipation.

Examination of her feet revealed: normal pedal pulses; past hammertoe surgery left foot, mild Hallux valgus both feet; diminished light touch, sharp and dull sensation in left foot, normal in right foot, and diminished deep tendon reflexes in both feet; mild, +1 pitting edema in both feet.

A discussion of her problem and the possible benefits (many) and risks (virtually none) of DIV led to her decision with her husbands’ confirmation to go ahead and sign into my study #13 titled “Chronic painful neuropathy of the foot and ankle due to local pedal trauma ( in this case, hammertoe surgery)”. As is my policy no promises or guarantees were given or implied orally or in writing as to relief of pain, success or cure of her condition at any time on any visit.

She was advised to have three to five treatments per week of DIV and 1cc. (1000mcg’s) Vitamin B12 intramuscular injection every five to seven days. This care and the consultation would all be provided her free of charge.

After four treatments and no adverse reactions to therapy, D. S. shared with me and I quote :
“I already noticed in 4 treatments sleep has improved drastically, less stiffness in AM, less pain meds needed especially at nighttime, walked with less pain in back and legs, asthma not as bad, nails growing, less consistent nerve pain although I still have it it seems to not shoot as far or for as long, pain is more concentrated, less spacey, less constipated”.
“I won’t lie and say I am all better and ready to go home, but even just sleeping is amazing. I have not slept like this in 4 years. The nerve pain is intense and I still have pain in all the areas I did but it is more concentrated, not shooting as far and doesn’t debilitate me to tears every single day. I have been able to walk better…”.

She continued therapy at a three time a week rate for a total of nine treatments. She had continued to improve walking as much as 5 miles at a time, pain free during and after.

Case Study Two

Mrs. K. C. arrived at my office with her husband on August 2, 2010. K.C. is a 55 year old, 5’4”, 160 lb female with a chief complaint of burning pain radiating from her right foot throughout her body. She had been to an emergency room and was admitted to a hospital on July 24, 2010 for one week “to try and get the pain under control with IV Dilaudid and Ativan. K.C. is an R.N. that had been employed coincidently as nurse in a pain management clinic prior to undergoing Morton’s Neuroma surgery in March 23, 2005. Following the surgery pain and edema began immediately from the third toe and along the lateral side of the right foot.

Due to continual uncontrolled pain and edema a revision of the neuroma and scar tissue was performed on Nov. 23, 2005, which was unsuccessful. Peripheral nerve blocks, lumbar sympathetic nerve blocks and acupuncture (caused increased pain) failed to help. On August 6, 2007 an exploration and excision of a neural with a sural nerve graft and removal of additional scar tissue was performed, which also was unsuccessful at stopping her pain. Her pain now extended from her right foot up the right side of her body (both front and back), her face to the top of her head. Episodes of profuse sweating burning pain likened to “severe sunburn” and head pain which was described as being like “brain-freeze” (caused by eating something ice cold too fast), which could last from minutes to hours began. She was diagnosed with CRPS on Feb 19, 2008.

Lyrica, Kadian, nortryptyline, Fentanyl patch,Vicodin, Nucynta, Medrol, Opana and Namenda were used in various combinations all completely ineffective at controlling her pain symptoms throughout the course of her condition.

Examination of her feet revealed: mild Hallux valgus (greater in the right foot than the left) bilaterally; scarring from past surgeries second interspace right foot; mild edema 2nd toe right foot; normal pedal pulses, and CRT; slight tenderness on palpation over 2nd interspace; lessened sharp and dull sensation right foot as well as with 5.07 monofilament and diminished deep tendon reflexes right side.

She began DIV on August 2, 2010 and was treated three times a week along with injections of 1000mcg. Vitamin B12 IM, every five days. After two months of therapy most of her symptoms had changed from either diminished greatly to virtually not present. By November she had 30 out of 36 days with no pain and required little to no pain medication even on the painful days. She currently is being slowly taken off the Fentanyl patches and very rarely needs any pain medication. She is looking forward to returning to work in the spring when we will complete her care.

Discussion

Direct Intravenous Therapy (DIV) is useful in destroying all viruses, funguses, yeasts, molds and bacteria’s in the human body. In addition it can chelate toxic metals off nerve tissue as well as from blood and cells and help restore proper blow flow and oxygenation to the cells. As the results of these patients have been so impressive it reasons that one or more of the above must be the cause at least in some if not all cases of RSD. Surgery and accidents are very stressful to the body’s immune system. In addition, post-op antibiotics are often used to prevent or treat infections further stressing and weakening the body’s natural immune system following surgery. It follows that this allows these antagonists, previously present on the nerve tissue, to attack resulting in CRPS.

Conclusion

RSD (CRPS) is a serious debilitating condition that until now has had no definitive treatment or cause, except pain management and speculation. It is estimated that as many as 1.2 million Americans are effected by CRPS. DIV ozone therapy appears to be a treatment that may help many people who suffer from this serious disorder. Further clinical trials are needed to test this treatments effectiveness. This research may lead to a breakthrough in care and help thousands of people achieve relief from this relentless pain. As RSD often results from pedal surgery or trauma it is wonderful coincidence that a podiatrist may have found an answer.

References

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MZ Kiralp, ~ Yildiz,D Vural et al. Dept of Physical Therapy and Rehabilitation and Dept. of Underwater and Hyperbaric Medicine Gulhane Military Academy, Haydarpasa Training Hospital, Istanbul, Turkey. Effectiveness of Hyperbaric Oxygen Therapy in the Treatment of Complex Regional pain Syndrome. Journal of International Medical Research 2004; 32: 258-262.

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Botox: 2 months in

I really do like my neurologist. He is a good doctor.  He is the only doctor I've ever had who has called me repeatedly to check on me.  I understand that as his first botox patient he may have a professional interest in how I am doing as much as anything else.  But regardless of his motives - I feel good that he calls me to check up.

I have been keeping track of not only the days I have headaches, but the severity.  My scale is 1-5 (I stole my scale from the book "Chocolate & Vicodin".)  5 is obviously the most severe.  The month prior to the botox shots I had 2 level 5 headaches, 7 level 4 headaches, 10 level 3 headaches, 7 level 2 headaches, and 1 level 1 headache.  Not a single day without any sort of headache at all.  The first month after the botox injections I had only 1 level 5, 8 level 4's, 10 level 3's, 8 level 2's, and 1 level 1 again.  Still a headache every single day, though.  Still it would seem like an improvement. 

I had told my neurologist I didn't think it was helping as I still was having headaches.  I knew that it didn't always make them go away completely, but should make them occur less frequently and with less inensity. 

Is it working?  I'm still not sure.  And month 2 tells a very different story than month 1.
6 level 5 headaches -four of those in a row :(  10 level 4 headaches, 9 level 3's, 3 level 2, and not a single level 1.  Also, a headache every single day for that month. 

(In case I didn't already point this out - these botox shots are into muscle and the botox shots the plastic surgeon does are into nerves - so the outcomes from the treatments could be very different.)

Thursday, July 7, 2011

The Handsome DO

Sorry I have been away so much and haven't posted recently.  Between work, school, homework, and headaches I don't seem to have much time for anything - especially blogging.

My most recent blog-worthy experience involved Dr. Stuart Porter, DO.  (And a handsome DO at that!)  He was recommended to me by a very close friend and then another one of my very close friends went to see him and was quite impressed with him also.  So I decided it was time.  I need something different, a new perspective.  I'm not giving up on my neurologist and his cute PA.  I can't, they are doing their best, I truly believe they care, and they have incredible customer service.  But I want another opinion.  Enter the handsome DO.

Unlike an MD, Dr Porter spent about 1 hour with me.  You know all that paperwork they have you spend like 30 minutes filling out and then never even look at?  Not Dr Porter.  We went over that paperwork quite extensively.  He asked me more questions than I could care to count.   He has a very holistic approach and explained everything quite well.  He said he wanted to check for a vitamin D deficiency and I informed him I'd just a test done and was fine.  So he explained that he has a very different standard than most labs and would like to check it again.  He also wanted to check my thyroid and hormone levels - I wasn't about to tell him at this point that those have already been checked and are fine.
He looked over my medical file which I had sent to him from my neurologist.  It had the vitamin D test results and sure enough - I was deficient.  Certainly by his standards, but .5 points off from being deficient by anyone's standards. 
At the end of the appointment he took about 8 vials of blood and asked me to come back in 2 weeks.


2 weeks later I walk into his office, scared of all the foods he must have discovered I was allergic to.  Please, not corn and please not cows milk.  The nurse teased me and said that I was going to love my new diet - I'll be eating nothing but meat and leafy greens. 
Dr. Porter came in and again, we spent about an hour going over all of my test results.  He didn't just discuss what came back as bad, he also discussed what came back as good.  Soften the blow, right?  If I wrote about EVERYTHING he tested me for and the results as well, this would be a novel. 
My thyroid and pituitary glands are functioning properly.  They are releasing the proper amounts of hormones.  However, my T4 levels are low.  (My last hormone test was only for TSH.) 
Vitamin D test came back even lower than my last one now indicating and even greater deficiency than before.
I am insulin resistant.
Lots of other stuff that's not nearly as exciting and lead me to be on a huge amount of supplements.

Food allergies - this is where it is potentially exciting for you as a reader, but miserable for me.
Here is what I am NOT allergic to - according to his test:
Almonds
Rice
Chocolate  (before we say, Thank God for that one!)

What I cannot eat due to other problems and deficiencies  (which means I MAY, someday, be able to eat them - sparingly):
SUGAR (Not sure how to have chocolate without sugar, unless it's artificially sweetened)
Artificial sweeteners (see, no celebrating for me)
Soy
Starch (this includes virtually every vegetable that grows in the ground as well as legumes.  the exception - thank goodness - garlic)
Fruit (unless it's berries, apples, and grapefruit - low glycemic fruits)
Aged Cheeses
Vinegar
Mushrooms
Foods containing yeast
Caffeine
Alcohol - see, no celebrating of any kind!

Foods I AM allergic to:
Eggs (the white)
Cows Milk
Peanuts
Gluten
Wheat
Oats
Corn
....there are more, but that is all I can remember for now and those are the biggies :(

Needless to say - I am hungry a lot.  I also cheat on my diet a bit.  I try really hard to avoid all these things, but I give in to temptation, hunger, peer pressure, and simply - convenience.

This is going to take some serious getting used to :(

Thursday, June 9, 2011

Botox : Information

I've received criticism from some regarding my desire to get medical botox and then having actually done it.  People can't understand why I would put "poison" in my body.  I have done my research and now I want to clear a few things up regarding "poisons" and most importantly, Botox.

There is a bacterium called Clostridium Botulinum that is most often found in spoiled food.  By consuming infected food this bacteria it is able to enter your blood stream and systemic systems and can virtually attack any part of your body.  Clostridium Botulinum, or Botulism, produces 7 different neurotoxins.  These 7 toxins attach themselves to the axon terminals of neurons preventing the synthesis and exocytosis of the chemical messenger acetylcholine.  Acetylcholine is used throughout the body, but is especially important in the innervation of muscle tissue.  Without the release of acetylcholine a muscle contraction cannot occur, which means paralysis of that muscle.  This is particularly troublesome if the neurons being attacked are those that innervate the muscles of respiration.  If you can't breathe, you will inevitably die.  This is also a serious problem if the neurons are those that innervate your heart.  

Could the prevention of muscle contraction possibly be a good thing? 

One cause of migraine headaches in some people is neuralgia or nerve pain.  A cause of occipital and trigeminal neuralgia is that a few of those nerves (or their branches) upon leaving the skull have to pass through very narrow passageways in bone, tissue, and between muscles.  If one or even many of the muscles surrounding that nerve contracts it can pinch or irritate that nerve causing nerve pain (neuralgia). 
Again, I ask, could the prevention of a muscle contraction be a good thing?  If those facial, cranial, and neck muscles can't contract, they can't pinch the nerve and will therefore prevent neuralgia (nerve pain).

As I said, the bacterium Clostridium Botulinum produces 7 different neurotoxins.  Those neurotoxins affect many different proteins necessary in the synthesis and release of acetylcholine.  Botulinum Toxin A is only ONE of those SEVEN toxins.  And it only affects ONE protein.  Botulinum Toxin A (Botox) is RELATED to the bacterium Clostridium Botulinum (known as botulism).  But it is not botulism.  It is a purified, sterilized, and diluted protein derived from Clostridium Botulinum. 

Second point - I do not ingest botulism or even Botox.  It is not put "IN" my body.  It is put on my body.  It does not enter the blood stream to then travel to other areas in my body.  It does not affect other systems in the body.  (Like any medicine that you might ingest.) 

The amount of Botox used in medicine and cosmetics is 50 units.  Because this is only one of 7 neurotoxins used by bacterium Clostridium Botulinum, and it has been diluted, purified, and sterilized, in order for Botox to be fatal a person would have to receive an injection of THOUSANDS of units DIRECTLY into the heart.

Curare is a toxin derived from a plant.  It has been used for thousands of years to make the often fatal "poison darts".  Curare is also used to relax muscles during anesthesia.
Purple foxglove is a poison that has been found to be a very effective heart medication.
Willow bark is toxic and causes fatal bleeding.  But it is also used to prevent or minimize the effects of a heart attack as well as to prevent strokes. And has been found to reduce inflammation, relieve pain, and reduce fever.  In fact, millions of people consciously ingest this poison every single day (it is called aspirin). 
The crocus flower is a very poisonous flower, but one of the most expensive spices in the world is derived from this flower.  If you have ever intentionally eaten saffron, you could be said to have consciously ingested a poison.

Let's also not forget that whenever you get a vaccination you are getting a small or inactive amount of a particular virus injected into your body.  You are getting "medicine" that has been derived from a very mean, nasty, and virulent virus.  (Viruses are some of the most potent, fast-evolving, fascinating, and beautiful creatures on this planet.  And they are amazing and efficient little killing machines.)

It would seem that the words "toxin or poison" and "medicine" can be synonymous.  What may be "medicine" to one person may be toxic to another.  And what may be toxic to one may be "medicine" to another.  Or what may be toxic when used in one way is actually medicine when used another.

When I went on Cymbalta no one said to me, "Why would you put that poison in your body?"  But from my personal experience ingesting Cymbalta was much more toxic to my entire body than Botox has been to the few tiny muscles it was applied to.

Also, interesting to note, studies have shown that Botox is safer than aspirin.  But I bet that many of you have taken aspirin and thought nothing of it.

Tuesday, June 7, 2011

Migraine: Information

Some people seem to have misconceptions about migraines and some seem to have misconceptions about Botox.  I want to clear a few things up.  I'm sad to say that I know more about Botox than I do about migraines, but what I've also discovered is that no one really seems to know an awful lot about migraines as they are very complicated.  They can be very different from one person to the next and their cause seems to also vary considerably from one person to the next. 
One cause of migraines for some people is neuralgia (that's a fancy way to say nerve pain).  Certain muscles in the forehead, temple, neck, and base of the skull tighten and pinch or aggravate the nerve.  As I mentioned before, I have sometimes suspected that my migraines were more this type than those caused by vasoconstriction or vasodilation.
So there you go.  Why is it so difficult to treat migraines?  Because no one knows the true cause of them - at least not from one person to the next.

So far....

I think the Cymbalta withdrawals are finally starting to subside a bit. I feel normal often.  Not necessarily more often than not, but, baby steps.  I'm very rarely nauseous anymore.  The vertigo or dizziness thing isn't quite gone.  I still experience it from time to time, but it seems to be happening much less often.
The Botox ..... I'm afraid that it may be too early to tell.  Friday night I had a migraine.  Saturday day and into the night I had a migraine.  Sunday I had a headache that turned into a migraine overnight. 
I know that in some people the Botox will make their migraines go away completely, but in others it just decreases severity or frequency.  At this point it's just too early to tell really.

Oh, and my cute neurologist (who doesn't seem to have much of a sense of humor) called me Monday to check on me.  When I told him about my weekend he said that unfortunately it does take from 24 hours to 2 weeks to start working.  But he asked about side-effects and I said that I hadn't experienced any.  However, I there was one side-effect that I was really hoping for.  He put one shot right in between my eyes and I still happen to have quite the little "crinkle" there from scowling so much.  (I'm ornery as hell, I can't help it. Those years of endless scowls and dirty looks are taking a toll on my face.)  Well, I was joking with him, but as I mentioned he doesn't have much of a sense of humor.  He said when you come back for your second injection in a few months remind me about that little crinkle and we'll put extra there. 
Really?
He said, yes, your insurance covers a certain number of treatments, and an over all amount, but that's all.  I'll have more than enough to cover your regular injections and still ut a little extra in that spot.   :)  He's great.                               

Injections

I got a very happy and welcome phone call on Wednesday, June 1.  My insurance company had accepted my appeal (or rather my neurologists) to be a candidate for Botox injections to relieve my migraines. 
When I went in for my appointment on Thursday I was given 31 injections of Botox.  7 in my forehead, 5 in each temple, 3 around each occipital nerve, and then 4 down each side of my trapezius muscles.  The needle was tiny and I could barely feel it go into my skin, but once the injection happened it got to be a bit painful.
It's not supposed to start working for about 24 hours so I didn't expect any immediate effect.  I do want to note that I was the first ever Botox patient of this neurologist and his entire neurological office.  But regardless of that, I think he was great. 
He told me about a few side-effects.  Redness, swelling at injection site, and droopy eyebrows. 
I can happily say that I experienced none of those side effects. 

Trazodone Side Effects

One of the side effects of Cymbalta is insomnia.  So to counter that the doctor prescribed another medicine that is a known migraine preventative that has the side effect of sleepiness (amitryptalin).  Unfortunately not only did the amitryptalin not make me the least bit tired, it seemed to have absolutely no effect on my insomnia.  So then the doctor had me try trazodol instead of amitryptalin.  Trazodone is also know to prevent migraines and has the side effect of making a person very sleepy,  Well, it seemed, at least initially, to be making me sleepy.  However, some of the other side effects of trazodone were not so pleasant.  It gave me horrible dry mouth and congestion (only when lying down).  And I'd only experience these side-effects the first 6-8 hours after taking the pill.  I couldn't breathe.  Yes, it would make me sleepy, but then because of my difficulty breathing I couldn't sleep.  It seemed to stop even making me tired after a few weeks and it wasn't preventing any migraines either. 
So I went off that one, too. 

P.S. The pharamcist told me that it only makes you tired for a few weeks and then your body seems to adjust to it.

Thursday, June 2, 2011

Cymbalta Withdrawals

As a result of the chest pain I have stopped taking Cymbalta.  I know that one side effect is heartburn and I wanted to see if it was the Cymbalta causing it.  (I consulted with my neurologist about this first, I did NOT simply go off it all by myself.)  Friday, May 27 would technically be my second day off the stuff.  All day I just felt an overall "yuckiness".  Just "not well".  Hard to explain, hard to put my finger exactly on what it was.  If I exerted myself the feelings would get much worse and I'd also start to feel lightheaded.  Also a slight headache.  (I've never had the flu, but I imagine this is what it might feel like in its very early stages.)
Saturday, my third day off he stuff.  Much worse!  Nausea, dizziness, lightheadedness, headache, fatigue, and still that overall "yuckiness".  Saturday night the nausea hit it's peak.  I threw up 4 times in about 90 mins.  And I still had chest pains. 
In the middle of the night it occured to me, I know what histimine does to the body, it makes sense that an antihistimine would decrease my feelings of nausea (and also help me sleep!)  I did a little research online via my iPhone and sure enough - benadryl would help with my nausea.  So dug through Jody's medicine cabinet and was fortunate enough to find benadryl.  Now, let me be lucky enough to keep it down.
It worked!
Sunday morning I still felt yucky but remembered that the pharmacist had told me that I could take dramamine whenever I get nauseated from my migraines.  I looked at what dramamine helps with and it said - nausea and dizziness.  YAY!  So I took dramamine to help me get through that day.  It never made anything go away, but made it bearable.
Monday, more of the same.
Tuesday, more of the same.  But at this point I was so frustrated with feeling yucky in addition to the headaches and migraines (and who knows, maybe an additional withdrawal symptom of Cymbalta) depression.
I cried the entire drive to work.  I took several breaks during my work day to go to the bathroom and cry. I cried my entire lunch hour.  It took everything I had not to cry while sitting at my desk greeting clients and interacting with co-workers.
I finally called my neurologist.  She named off the list of known withdrawal symptoms of Cymbalta - check, check, check.  She said that I could go back on it and we could try to take me back off it even more slowly, but at this point I am nearly half way through the withdrawal period.  I elected to tough it out.
My drive home Tuesday afternoon was very scary, I'll be honest with you.  I was starting to experience the strange neurological withdrawals that I had read about.
Wednesday, in the shower I nearly passed out from the dizziness.  So I stopped midshower and went right to bed (with a towel around my head and everything).  Called in sick and slept nearly the whole day.  Felt yucky, yucky, yucky.
Today is Thursday and I am back at work.  Still feeling yucky.  Still very lightheaded and on the verge of passing out. :(  And still crying constantly (or at least fighting off the tears.)  I've never really suffered from depression - a few days this past winter.  And this is crap is ridiculous.  I don't even know why I'm sad and crying half the time. 
I've read that withdrawals can last 2 weeks.  I'm almost to the halfway point.

Tuesday, May 31, 2011

D.O.

I have always been a fan of the idea of going to a doctor of osteopathy.  (A DO takes a very whole body approach to medicine).  Two of my best friends recently went to Dr. Stuart Porter, DO and I heard great things from both of them about him.
Thursday, I got to visit with him.  What an amazing difference between virtually every MD I've visited with and this DO.
First of all, I'm not sure if I can call what I've done with MD's "visiting".  I see them for about 10 minutes and they ask few questions other than what are your symptoms.  Don't you care about the extensive medical history and list of medications I just spent 30 minutes filling out for you?  Didn't your nurse write down all my symptoms when she asked me 15 minutes ago what they were?  And didn't you hear me when that I told you that "triptans" don't work, in fact they make my migraines much worse? So why are you now prescribing me a triptan? 

I spent about 3 minutes with what I assume was his nurse - she took my weight, temperaure, and blood pressure.  Then I spent about 30 or 45 minutes with the doctor.  That's right - I had him all to myself for more than half an hour!  And that extensive family history and medical history form I filled out.  He looked at it.  Right in front of me.  Ask me questions about it.  Then he went through an even more extensive questionaire which included things like, "how are you sleeping?", "do you feel fatigued during the day?", "do you suffer from seasonal allergies?", "do you crave sweets?", "how often are you menstruating?" (not just what is the date of your last period).  With certain answers that I gave him, he would then explain how that may or may not help with the headaches. Finally, he wanted to perform an allergy test on 13 known and common food allergens.  And explained that sometimes you have a food allergy that goes unnoticed because it doesn't give you a stomach ache or make you feel the same way you do with other allergies.  Also, he wants to test all of my hormones and also my Vitamin D levels.
This is where I stop him - oh, I've already had a Vitamin D test ran and the results came back that I am fine.
He says that he's going to run it again because headaches are a result of low Vitamin D levels.  And what the lab says are "fine" are not fine to him.  The lab will approve Vitamin D levels above 32, but he considers anything lower than 50 as too low.  And for someone suffering from headaches it best to have them closer to 100. 
Just as we're about to wrap up he sees the paperwork I had my neurologist send over.  What's this?  I tell him what it is and he says, "let's see if your Vitamin D test results are in here."
Sure enough.  And you know what my "fine" level is?  32.5 
So I'm taking Vitamin D, but he also recomended a few others. 
Follow-up in two weeks when we'll have the results back of my hormone and food allergy tests.

Falling Apart? Or Bad Week?

It all started with the wonderful, and yet painful, massage on Tuesday.  I was sore for several days after that.  Then the severe chest pains on Wednesday morning that had me thinking I may need to run to the hospital. 
To make matters worse, I had a little fall Thursday morning.  (I lost my balance while sitting on the counter in the bathroom.  Are you finished laughing yet?)  The fall hurt my hip (where I landed), my shoulder (which hit a small cabinet I have in my bathroom), my foot (which hit against the side of the door on my way down), my lower back, (I guess from the jarring landing I made), and my wrist (which I can only assume I tweaked while trying to catch myself and soften the blow). 
I'm off the Cymbalta, which was making me sick and is now REALLY making me sick - I'll discuss that in a minute. 
The Trazodone which is supposed to help me sleep is not really working any longer.  And besides that, the side effects of the trazodone add to my inability to sleep.  The side effects are congestion and dry mouth.  So as soon as I lay down I begin to feel congested so I can't breathe through my nose anymore.  And then it causes dry mouth which is exponentially worsened by the fact that I have to breathe through my mouth.  The final and most exciting side effect is the blurred vision.  So when I can't sleep, I can't do anything else, because I can't really see.
Then to top it all off - I think I sprained my pinky toe Monday night.
So now I hurt everywhere and feel like I am just falling apart!

Wednesday, May 25, 2011

Cymbalta Side Effect?

Sometimes I worry about reading the potential side effects of a medication because then I may experience them simply because I expect them.   Like a placebo - sort of.
But I looked up the side effects of Cymbalta anyway and I saw insomnia.  Well, as you know, my faithful blog reader(s), I am suffering from insomnia.
I have never had heartburn in my life until about a year ago.  And then ONLY when I took a peppermint pill for my tummy.  But for the last two months I've had heartburn quite often.  I tried to identify what it was - was it caffeine, was it chocolate, was it spicy foods?  It almost didn't seem to matter.  I'd get it on an empty stomach.  Everything but water gave me heartburn.
I learned in physiology the difference between all the heartburn medications and which was the weakest and which was the strongest.  So I went to the pharmacy and picked up the strongest heartburn medication available.  It was even a time release one so that it would work all day.  It didn't help.
When I had I looked up side effects of Cymbalta, there it was - heartburn. 

I've been having a most interesting issue with my stomach and esophogus and chest the past month or so.  Whenever I eat (it doesn't matter what, it doesn't matter how much) I get that feeling like something is stuck at the bottom of my esophogus and top of my stomach.  Each swallow - stuck.  I knew that it wasn't, but it was that sort of feeling.  Only this was painful and would radiate up my esophogus giving me pain in my chest.  It would only last a few seconds, but it was very irritating.  Then when I finished eating I'd have this pain that would start at what I imagine to be my esophogeal sphincter and would radiate up my esophogus.  It came in waves and could be quite painful.  It would last 10 or 15 mins after I finished eating.
This weekend I experienced it a few times and my chest hurt so bad I thought for a second - what if this is a heart attack?

This morning, after I ate breakfast, that pain was back - and with a vengeance!  I doubled over, I saw stars, it was hard to breathe, I was in tears and swearing like a sailor!  Each wave just a minute or two apart was excrutiating!  I thought I was going to have to go to the emergency room.  And it lasted nearly two hours!  It slowly subsided after about an hour and fifteen minutes - enough so that I was no longer constantly thinking about where the nearest hospital was. 
I decided that since Cymbalta is quite possibly giving me heartburn, I'd look up the other side effects.  I saw "abdominal (stomach) pain" listed.  Well, that's not exactly informative.  What KIND of stomach pain?  What did it feel like?
I continued my search - this time turning to websites that were not drug specific - and I found a blog that's meant to be a support to those suffering from depression.  It had postings about antidepressant medications and the side effects people had suffered.  One woman posted "Ever since starting Cymbalta several weeks ago I have had horrible heartburn.... There are times when the pain in my chest is just a huge pain in the center of my chest. It gets so bad that I take the Extra Strength Vicodin that is prescribed for my disk degeneration". 
YIKES!
So I called my neurologists PA and told her about my experience and that I wonder if maybe it's from the Cymbalta.  Well, I'm going off Cymbalta immediately to see if this stomach/esophogus problem goes away.

Potentially Great News

Spoke with my neurologists PA today and it turns out I may qualify for Botox injections to treat my migraines.  The best thing about this (versus the plastic surgeon who suggested Botox injections) is that it is quite possibly covered by my insurance.
The FDA has approved Botox as an acceptable treatment for migraines in certain circumstances and Paula, my cute PA, has said that I am an excellent candidate.  To be a candidate I have to:
1) have more than 15 headaches a month - CHECK
2) not respond to several preventative medications - CHECK
so she's working now with my insurance company to get it covered for me.

Massage

Let me tell you about the  most professional, most caring, most amazing massage therapist I've ever been to.  His name is Garret Sueltz at Studio 603 in Draper (801-571-5331).  Yes he was so good that I am going to give him a plug.  If you live near Draper or don't mind driving to Draper for a massage, he is well worth the drive and well worth the money.
I had a Groupon for a 60 min massage at Studio 603 which is how I came across Garret.  I was the last client of the day.  When I went in Garret asked me why I had come to see him.  I explained that I have chronic headaches and frequent migraines.  He asked if I wanted him to focus on my back, neck and shoulders and I said yes.  If he could get that worked out then he'd move on.  Otherwise he'd spend all of his time there, he explained.  He asked if he could do a deep tissue massage to which I gave him a very affirmative yes.  I love deep tissue massage (I'm not one for the nice relaxing Swedish style massages - I want it to "hurt so good"). 
Garret began to explain what he was going to do, where he would massage, and warn me that it will hurt.  The muscles that need the most work are very deep, but also, they sit right on top of a bunch of nerve bundles.  And then the usual - let me know if it hurts too much.  I think only one time have I ever told anyone it hurts too much.  You can have me in tears (and some have) and I won't tell you it hurts too much.  I know pain - I deal with it all the time.  A deep painful massage is the type of pain that I know will come to an end in just a few minutes when the therapist moves on to another muscle or body part so I will just take it.  Also, I know that it's a healing pain. 
So Garret works and works and works; knots in my muscles are popping, I am cringing, pain is shooting all the way down my arms when he works on my shoulders.  But Garret keeps plugging away.  Knot after knot after knot gets massaged and pushed on and stretched out.  He was determined to get everyone of those knots out and those muscles relaxed. 
I am laying there thinking - this is the longest massage I've ever had!  Or does it just feel that way because of how much pain it's causing me?  Or is it because we're working on only a portion of my body and I can usually gauge how much time I have left by what body part they've moved on to or if they've asked me to roll over?
In the end it was the longest massage I've ever had.  When I looked at the clock I noticed that Garret had given me a 90 min massage for about the price of a 30 minute massage.  He didn't charge me extra, didn't even say anything about going over the time.  He was so determined to help me, to relax my muscles, to remove those "toxins" from my body, to get those painful knots out that he just kept going.  That's why I say he was the most caring and most amazing massage therapist I've ever been to.  I don't think he ever looked at the clock and he certainly never had a timer going. 
He's also the first massage therapist to ever massage my stomach and my face.  Incredible!
When I took a massage course at the age of 18 from the college of massage therapy they taught me to massage the stomach.  But I've never actually had anyone do it until Garret.  Another reason I think he's amazing.
And then in the end when it was finished he showed me stretches to do for the muscles that were massaged and for complimentary muscles.  This is why I think he is the most professional massage therapist I've ever been to.  It wasn't just a massage to him, it was a therapy session. 
He told me that I'd need a follow-up massage in about 3 weeks when those knots and muscles would be more pliable and gave me a coupon for 50% off my next one in case I wanted to return to him for that follow-up.

So, again, Garret Sueltz at Studio 603 in Draper (801-571-5331). 

Monday, May 23, 2011

Pre-Med Conference

I attended the first annual Intermountain Pre-Med conference this weekend.  I knew that most of the information and topics at the conference would not suit me, but I did see a workshop on Women in Medicine, How to be an Outstanding Applicant, and a presentation on Osteopathic Medicine.  Also, there were a  lot of colleges there who have PT programs that I was not aware of.
What I found most interesting at the conference was all the osteopathic colleges and universities there were there.  It seems there were more of them than more "traditional" (if I may use that term) medical schools. 
I have always been fascinated by osteopathic medicine and in fact, my GI doc and my GYN doc are both DO's.  I tried finding a neurologist who was a DO but to no avail and so ended up with Dr. Reichert instead (who I do respect and know he's doing the best he can for me.) 
I became convinced that I can no longer put off calling Dr. Porter, DO who's practice is in Provo.  I was reluctant about going so far away for a doctor, but clearly the medications aren't working so it's time to get another opinion.
Wish me luck!

Friday, May 20, 2011

Occipital Nerve Block : Day 5

I have a headache again.  I know this comes as no surprise.  But what is a surprise (although it probably shouldn't be) is that the nerve block appears to have worn off already.  My neck hurts - and not just in the injection sites, but all over.  And there is pain again in the back of my head.

I took excedrin in the late morning - I don't know why I even try anymore.  I guess because I haven't completely given up hope that SOMETHING will help. 

Trazodone

Wednesday night I finally dared take the trazodone I'd been prescribed on Monday.  When I picked up the prescription the pharmacist asked if I'd ever taken the medication before.  When I replied no he proceeded to tell me to be careful with it and that I may want to take it at night as it is known to cause extreme drowsiness among other things.

Drowsiness?  YAY!

So I took my first dose Wednesday night and I slept quite well.  Question was .... was it the trazodone finally working?  Or was I just so exhausted that my mind & body finally gave in?

Thursday nigh I took my second dose of trazodone.  I am happy to report that I had another great night of sleep.  I hate to speak too soon, but we may have found a winner.  (At least with regards to the insomnia.  Still working on the migraines though.)

Zombie

An hour and a half.  That's all the sleep I got Tuesday night.  Went to sleep late - about 11 (partially because I was out too late and partially because it took me awhile to fall asleep.)  By 12:30 AM I was wide awake.  I tossed and turned for about an hour.  Then I played sudoku and checked email and such for about an hour.  (Darn it!  Why did I leave my book in the car?)  Then I decided to watch some TV.  That would use less brain power than sudoku so maybe it would help me relax.  Watched a 2 hour episode of Celebrity Apprentice.  By this time it is 4:30.  I AM actually starting to feel a bit tired, but my alarm is going off in 30 mins since I need to be at work early for meetings.  I think I had just shut my eyes and began to drift when it's time for me to get up :(
I can't recall a time when I've ever felt so exhausted before.  I felt like a zombie!  And one of my co-workers lovingly told me I looked like one, too.
I am experiencing postdrome in addition to the exhaustion - what a lovely combination. 
Trapezius is still hurting on the right side in the shoulder region.  But no headache in the morning and only a mild one the rest of the day.  The exhaustion was enough to deal with anyway.

Occipital Nerve Block : Day 2

I didn't get much sleep Tuesday night as I had chemistry lab until 10.  Felt quite tired all day as a result.

By afternoon I had a serious headache.  I took excedrin early but it offered me no relief.  As I analyzed the pain and areas of pain I noticed that it was both stabbing and throbbing pains and it was all in my jaw, temples, side of my head (in front of my ears), top of my head, forehead, and behind my eyes.  No pain in the occipital area (back of my head).  Interesting! 
It finally occured to me that I was having a migraine, it just didn't feel like my usual migraines because of the nerve block to my occipital area. 

So nerve block not entirely pointless, but clearly I need other areas injected as well. 

Took fioricet later in the afternoon.  It helped take the edge off.  Unfortunately, I am running dangerously low on it.  Which I guess I shouldn't be too upset about since it isn't helping as much as it should.

Occipital Nerve Block : Day 1

Monday, May 16 I got the Occipital Nerve Block.  It was probably a good day to do it since I'd had some headaches and migraines over the weekend and was having a moderate headache at the time.  Paula pressed on the base of my skull on each side until I told her she had hit the tender spot and then injected the blocker.  Shortly after the injection I felt tightness in my forehead - almost like I had a rubber band around my forehead.  But aside from that everything seemed fine, no faintness or nausea.
I discussed my restlessness and lack of sleep and it was decided that the amitriptyline must not be working and I am being switched to trazodone. 
After the shots I had to go to physical therapy to get a massage and some stretching to help the steriod get into my tissues.  On my short drive there I noticed a lot of pain and tightness in the shoulder area of my right trapezius.  Also sharp pain in my temples and behind my eyes.  The tightness in my forehead continued. 
After PT my shoulder no longer hurt at all - it felt great!  But the pain was still in my temples, behind my eyes, and the pressure and tightness was still in my forehead.

 

Headache Log : Insomnia....Still

I know that Ambien is not really supposed to be taken every single night so I'm trying to be careful with it. I also take my 10 mg pills and cut them in half (sometimes even into quarters).  My first few nights with it I seemed to have slept fairly well, but was still a little tired in the morning.  Fortunately, not groggy or in any sort of drug haze, just still tired.  And tired all day long.  I chalked it up to not being completely caught up on weeks and weeks of restless sleep or no sleep at all. 

I thought that maybe on nights when I had a minor migraine I could sleep it off with the help of the Ambien instead of resorting to heavier medications.  Also, all the OTC's that I take for headaches or migraines just keep me up - and that, I believe, exacerbates the problem.

Well, I'm still getting very little sleep and I'm still exhausted during the day.  I trade off the Ambien with melatonin, but I really shouldn't be taking either every night (and I'm not!)

Tuesday night / Wednesday morning was a bad night.  I was up about half the night with a migraine.  So I decided to get to bed early tonight and to take Ambien.  I took the Ambien at 9PM and by 9:45PM I still wasn't very tired, but I didn't have TOO much trouble FINALLY falling asleep shortly after 10PM.    However, I was wide awake at 3:30AM.  And exhausted with a headache this morning.

I guess I'll try a higher dose next time - maybe the whole pill :(

Monday, May 9, 2011

Headache Log : Suicidal or Homicidal?

After a wonderful week with no headaches or migraines at all.... (Yes, I can hardly believe it myself - it's a new record!  I went for 5 days without a single headache!)...I had a weekend full of migraines.  Fortunately these were not drug resistant - at least not completely - the drugs took the edge off.   
Saturday night was a family dinner and I listened to kids screaming.  One nephew in particular has an extremely shrill and high pitched squeal and he let it loose that night.  UGH!  MY ACHING HEAD!

Then Sunday I went to Target to fill a prescription I had run out of.  Sunday was Mother's Day (a day that used bring me some amount of heartache).  There were lots of mothers and fathers there with their children.  One child was yelling for a least 10 minutes near the top of his lungs "double chin!" over and over and over again.  I could hear him clear across the store.  GOOD GOD SOMEONE SHUT THAT KID UP!  And another child was squealing in delight at having found her mother for her father, a few seperate times. 

I realized in that moment, in Target, and thinking back on just the night before, how incredibly blessed I am not to be a mother.  I thanked the heavens and the earth in those minutes in Target that I don't have children.  Because honestly, with these migraines, if I did have a child and that little bundle of joy and/or misery screamed or yelled like these children this weekend - I'd either kill her/him or I'd kill myself. 

Headache Log : Info on Occipital Nerve Block

I decided that if I'm going to have it done, but I may as well know what it is.  So I did some researching. 
You can see for yourself here
http://www.medcentral.org/main/OccipitalNerveBlock.aspx
or you can read my summation.

Basically they inject a type of steroid into the tissues surrounding (and possibly irritating or pinching) my greater and lesser occipital nerves (two nerves that come out of the base of your skull - if you don't want to wiki where the occipital nerves are).  The steroid is supposed to reduce any inflammation in those tissues that may be aggravating the nerve. 
Obviously there can be some soreness and tenderness at the injection site - the needle goes into some very deep tissues.
But they also apply a local anesthetic to help with the soreness and that will also, at least temporarily, help with any occipital neuralgia. 
The steroid is supposed to work anywhere from a few days to a few months.  (I suppose this depends on the person, the steroid, and the dosage.)

My hope is that it lasts several months.  But my sneaky suspicion is that there is more than one type of neuralgia causing my migraines.  I believe a branch or two of my trigeminal nerve is also involved and to blame for some of the pain.

*sigh*  At least I'm trying something, right?

Thursday, May 5, 2011

Headache Log: Insomnia

A year ago, I'd fall asleep as soon as my head hit the pillow.  And I'd sleep through most of the night (only getting up once to potty) I'd wake 2 or 3 minutes before my alarm was set to wake me.  I may have a day here or there where I felt a bit tired during the day, but I rarely felt so exhausted I was actually unhappy and depressed.
Now, it takes me 30 minutes to an hour to fall asleep.  (This is what happens on a good night.)  Then I'll wake up every hour to an hour and half.  I'll wake to potty 2 or 3 times (or perhaps its just because I'm already awake that I notice that my bladder feels a little on the full side.)  It will take me several minutes to an hour to fall back to sleep once I'm awake.  When my alarm goes off in the morning I hit snooze for 30-50 minutes before I can finally drag my ass out of bed.  Consequently, and rightly so, I'm exhausted all day long.  Exhausted to the point that I feel depression knocking on my door.
But I want to repeat, this is on a good night. On a bad night, I can't seem to turn my brain off.  The tiniest thing could upset or excite me and I won't sleep.  Sometimes I can't sleep because my head hurts too bad.  And of course the lack of sleep only exacerbates the condition of  my head.  When I finally do fall asleep around 5 AM in the morning, I wake about 2 hours later.  So not even sheer exhaustion can make me sleep longer than 2 hours at a time. 
But caffeine, you are my savior.  Which may be unhealthy and may lead to some of the waking in the middle of the night to potty.

Everyone at work tells me I should try Ambien.  They tell me how wonderful it is and how much it has helped them.  They tell me it allows them to shut off their brain so that they can finally sleep.  They tell me that you never have that drugged and groggy feeling in the morning.  I was also told that it doesn't require 8 hours of sleep - that you can get by on just 7 and still feel wonderful in the morning.

How do I get my hands on such a wonderful product?

Remember my recent story about the doctor who asked me what I wanted  him to get me?  No, he didn't prescribe me Ambien - or any sleeping pill at all.  (Although I kick myself that I didn't try to get some out of him!)
Well, I was relating the story to a friend of mine who's father is a doctor.  And I joked with her and asked her what she could hook me up with. 
"What do you want?"
"Ambien"
And that was it.  Her father called in a prescription for Ambien for me.

WOW!
Now I REALLY feel a bit like a junkie!  But I am sleeping (on the nights that I've dared to take it, anyway).  Still waiting to feel less exhausted during the days.  Maybe that will take weeks. 

P.S. Cymbalta, which I've been on for nearly 2 months now - side effect is insomnia.

Headache Log : Annoying

I have a minor annoying headache.
Sometimes I think this is the worst kind of headache because it's not bad enough that I can justify taking meds (especially now that I've been kicked off of excedrin) so I just suffer with it :(
(It's also not bad enough to justify my getting much sympathy)

My favorite kind of headache (if you can possibly have such a thing) is a moderate one.
It's bad enough that I can justify taking meds in the hopes they will offer me some relief.
But it's not bad enough that I can barely function (especially should the meds not work - which is most often the case.)
The effects on my school work, homework, work (all those "works") are consquently also moderate.

Wednesday, May 4, 2011

Headache Log : Postdrome

I was looking a website about migraines (http://www.migraineheadachesaids.com/) and I saw something about migraines I didn't know.  I had heart about visual auras - although I don't experience these - but what I learned is that there are three stages to a migraine (some sites say four). 

The first stage is the prodrome.  Prodrome is the pre-headache.  In some sites the prodrome includes the auras and in others the aura is a seperate stage that follows prodrome.  During prodrome the migrainuer may experience one or many of the following symptoms:
Altered mood, irritability, depression or euphoria, fatigue, yawning, excessive sleepiness, craving for certain food (e.g. chocolate), stiff muscles (especially in the neck), hot ears, sensitivity to light, sensitivity to sound, sensitivity to smells, constipation or diarrhea, increased urination, and other visceral symptoms.
I thought because I didn't have auras I didn't experience warning signs or prodrome, but after looking at this list I just might.  If nothing else I experience the stiff neck muscles.  I had thought that those stiff muscles were causing the headache and here it appears that it might be the other way around.  Also, the sensitivity to smells and sound.

The second stage is the pain stage, this is the headache/migraine itself.  I won't go into detail here.

The third stage is postdrome.  This stage is the one that interested me the most.  The day after I have a migraine (if I don't STILL have a migraine) I had experienced exhaustion, soreness, disorientation or confusion and many other symptoms.  I had always blamed the medications for my migraine hang-over.  But what I found out upon reading about postdrome is that all of those and many more are a part of the post headache or postdrome phase.  I learned last Tuesday morning that I was truly experiencing postdrome and not linger drug hang-overs because I took absolutely no medication Monday and yet Tuesday, I woke up, feeling hung-over.  I was confused, disoriented, exhausted, sore, I couldn't think straight or talk normally. 

What does this mean?  Nothing.  I guess just that I'm normal.  And maybe that I need to plan on an extra sick day anytime I have a migraine - not just the painful day, but the postdrome day as well.

Headache Log : Any Drug I Want

So the day of my last post, Thursday, April 28, was my fourth day in a row with a migraine.  The pain in my head was one thing, but the stabbing pain behind my left eye and in my temple was unbearable.  Finally at lunch time, shortly after my post, I gave in and took myself to an Instacare.  What an interesting experience!

Determined not to be treated like another migraine sufferer and given a shot or prescribed a triptan drug that I can't take I decided not to tell them I had a migraine, but tell them I had a severe headache with stabbing pain behind my eye.  Well ..... that may not have been the best approach either.  The nurse put me through a series of tests to make sure my eyes were functioning normally and my vision was not impaired. 

Finally saw the doctor, he checked my eyes as well.  And at that point I gave in and told him I was a frequent migraine sufferer and was on my fourth day with this particular migraine.  He was a little concerned about the stabbing pain behind my eye, thinking it to be a new symptom.  Then I explained that I get it often.  Not with every migraine, but it's not uncommon.

Then things got interesting.  He asked what I wanted him to do. 
I said, "I'm in pain.  I have been for four days.  I need help."
He said, "I'm just a general physician.  You need a neurologist."
I said, "I'm currently under the care of neurologist, but I can't just drop into his office like I can an instacare or an emergency room and I don't think I can take this much longer."
He asked, "What do you want? A shot?  A prescription?"
I explained that the shots don't work, unless there's one I don't know about.  And triptans don't work either. 
He asked, "Do you want a painkiller?"
"If you think that will work?"
"What do you want me to get you?"

WOW!  Really?  How about some medicinal marijuana?  Can you get me that?  Or how about morphine or vicadin? 

I explained that I was there because I didn't really know what my options were. 
He asked what had worked in the past.
I told him fioricet had worked for a time.  And recently it's been intermittent. 
He suggested fioricet with codeine.  Add a narcotic to my barbituate and maybe I'd find some relief.

The first dose didn't do it for me, but the second one did.  YAY!
Of course, I can't take it while I'm at work or at school or need to do any driving so it does pose some potential problems.

Thursday, April 28, 2011

Headache Log : .....

Did I say my mood was better?  I guess that was before my fourth day in a row with a migraine.  That was before I was up half the night again in pain. 
Since I'm off excedrin I went back to my oldest remedy - advil cold & sinus.  But since I was at work and had a chemistry test and study group later that evening I didn't want to be loopy so I took the regular dose of 400 mg.  No effect. 
At about 9PM I took the heavier stuff - tramadol.  No effect, but to help me sleep a bit by 10ish.  Then at 2AM I decided to try advil again, but a double dose - 800 mg.  Nothing was touching this pain.
The suicidal thoughts returned in the middle of the night as I cried for hours over the throbbing vice-like pain in my head and stabbing pain behind my left eyeball. 

Headache Log : Drug Cocktail

Had my follow-up with the neurologist this week.  No hole in my heart, nothing on the MRI of my neck, nothing on the MRI of my brain (except that little pesky white spot).  So where do we go from here? 
Oh, and the good week was a fluke.  Bad weekend following that good week and a headache every single day since then. 
I could happily report that I am now able to focus and concentrate on homework.  (Unless I have a migraine.  But at least we know the Topomax is no longer affecting me.)  And my mood seemed to have improved.  Those were the only happy reports I could give. 
I was sort of hoping for a sleeping pill.  What I got was another anti-depressant that they said would also help me sleep.   And they asked that I start taking my Cymbalta at bedtime instead - perhaps that would help.  Because the headaches are still not gone and in fact, seem to be worse (at least lately) I was also prescribed an additional migraine preventative.  I have to start taking folate and also baby aspirin every morning.
So in an attempt to get rid of my headaches & migraines I now take 5 different pills a day.  Then I have my pill for my tummy. 
Oh, and the only thing that has been giving me any time of relief (excedrin - if the headache is very light) I am not allowed to take any more.  Or rather, I can't take it more than 10 times a month. :(

Lastly, the neurologist has ordered an occipital nerve block.  Not entirely sure what this does, but my understanding is that it will be similar to the Botox shots.  The doctor wants to try and break my body of this headache/migraine cycle.
I'll be getting those shots later in May. 

Headache Log : Insomnia

You heard in my last post that I didn't get to sleep until about 5AM as a result of .... the migraine?  Maybe some emotional things contributed as well.  I don't know any more at this point.  This is not the first time I've had insomnia.  At the beginning of the month I was so upset by a chemistry test that I didn't sleep until 4AM.  Ended up calling in sick the next day just so I could sleep. 
I used to be the type of sleeper who was out before my head hit the pillow.  I'd wake once in the middle of the night to potty and then two or three minutes before my alarm was set to go off in the morning I'd be wide awake!
Now, I lay in my bed and toss and turn for 30 minutes to an hour.  Once I fall asleep (IF I fall asleep) I wake every hour and half or so and it takes several more minutes to an hour to fall back to sleep.  When my alarm goes off in the morning I hit snooze 3 or 4 times before I am finally able to drag myself out of bed.  And then I am exhausted all day long.  To make matters worse, if the tiniest thing is bothering me or upsetting me, I don't sleep at all. 
UGH!  What's next?

Tuesday, April 19, 2011

Headache Log : Good Week?

Last week I "graduated" from physical therapy.  Last week I also broke a trend.  Last Tuesday was the first day since February 14 that I was headache free.  And then headache free again on Wednesday, I just couldn't believe my luck!  I had one on Thursday, but it was moderate.  So when I went to PT Friday morning I could happily report that things appeared to be getting better.  I was released and welcomed to call and/or come back if I ever needed to.    (I was also invited to shadow Tyler, my PT - AWESOME!!! - this is essential for grad school!)
I went in to the weekend feeling pretty good.  But late Saturday morning a migraine started coming on.  It didn't hit fast and hard it just slowly built up.  I made it to dinner with a girlfriend and we went shopping after that, but the music in the mall was bothering me and every smell irritated me as well.  Regardless of that, it was nice to have a friend with me to distract me.
By the time I got home Saturday it was pretty bad.  I didn't sleep all night.  I took fioricet around 2am which usually knocks me out.  It did nothing at all - no help with the pain, no drowsiness, not even the fun buzzed/drunk feeling I sometimes get.  Finally around 5am I started to doze.  I slept until 7:30am.  When I woke my head hurt even worse and I felt wide awake (go figure) so I took Tramadol.  THAT knocked me out!  I slept again until 11am.  I woke with the little tendrils of the migraine massaging my brain.  And by late afternoon it was another full blown migraine.  
Monday morning started out with a light, irritating sort of headache, but it progressively got worse as the day wore on. 
Was last week a turning of the tides?  Or just a fluke?

Monday, April 18, 2011

Headache Log : Cardiologist

So I went to see cardiologist Dr. Sherman Sorensen today.  He wasn't in the office to talk to me, emergency, but his very capable technician was there to run all the tests and then I could schedule the follow up chat with Dr. Sorensen at a later time, if necessary.

First test was quite interesting.  The put a little helmet with a few "probes" on my head, shot saline solution with thousands of tiny bubbles into a vein in my arm and watched to see how many of those bubbles made it through my heart and to the arteries in my head and how many of them dissipated before hitting my head.  TONS of bubbles means there's a hole and several bubbles means no hole.

The technician said the results were negative for hole in my heart.  In fact, he said, the results were SO negative that he almost had to question if the IV was working properly or not.  He said you'll usually see several, but I had ONE. 

Next test was an ultrasound of my heart.  OMG!  This was so cool!  I got to watch the whole thing.  (I've had a few different ultrasounds on my uterus and I've always watched and wondered how the hell the technician knew what they were looking at.)  But with my  heart - it was so clear and so obvious!  I watched as my valves opened and closed.  I watched my myocardium get fat and then skinny with each contraction and relaxation.  I watched the atria contract and then the ventricles pump.  I could see little black spots where the vena cavae entered my heart.  And the cool thing was that as we were looking at my left atria I could see all these little white specks.  I asked that those were and he said - those are the bubbles that are still in your system. 
But nothing there to indicate a hole either. 
Last test also involved the ultrasound and more bubbles.  This time he shot thousands of bubbles into my heart again and with the ultrasound we watched as my right atria turned bright white from tthe thousands of bubbles and noticed that my left atria stayed black.  No bubbles spilled from the right atria into the left atria - further proving that I have no hole between my right and left atria.

I have a perfectly normal and perfectly healthy heart.

So good news and bad news all at the same time.  Great news that I don't need to worry about having a stroke any time in the near future.  Great news that I am much less likely to have a stroke later on in life as well.  Good news that I don't have to have surgery.  Good news that I have a perfectly normal and perfectly healthy heart.
Bad news that we still don't know what is causing my migraines.

Thursday, April 7, 2011

Headache Log : Headache Specialist

Ok, so latest news according to my co-worker who's wife worked with Dr Digre is that Dr Digre is a very kind, warm, and wonderful person, but she's also booked 6 months out. But the woman who works the front desk is a real witch with a capital B; so instead of simply telling me that she's booked 6 months out and will call me in a few months she was horrible to me. They also tell me she's worth the wait and she WILL call me. However, I don't know if ANYONE is worth the wait. Granted, the suicidal thoughts have subsided, but that's in large part due to the fact that I finally feel like someone cares and wants to see me - and that is my current neurologist Dr. Reichert.
So we'll see... if she calls in 6 months and I still have a chronic headache (please, God, don't let me STILL have a chronic headache 6 months from now!) then maybe I'll consider seeing her.  But my suspicion is that if I still have a chronic headache 2 months from now I'll be getting Botox injections and on my way to surgery for neuralgia.