Went back on Verapamil. Felt like, at this point, I was running out of options, and since it had been years since I was on Verapamil and of everything I had ever taken it had worked the best, the longest, and with the fewest side effects, maybe I had been off it long enough it would work again.
So I am now 5 weeks in and ...No luck.
My neurologist was kind enough, when I went in 5 weeks ago to ask for Verapamil, to tell me that we really aren't out of options and to give me some hope.
Monday, I was back to the doctors. It was my regularly scheduled Botox injection which I opted not to have. Sure the reduced wrinkles are nice, but it's not working (and I miss being able to look surprised). :)
So my newest experiment is Keppra. Another anti-convulsant. This one doesn't have the side effect of ADD like Topomax did (thank goodness!). It has a much more pleasant side-effect - it may make me ornery. Some of you may not be able to comprehend how I can possibly be any more ornery. This is going to be an exciting discovery for all of us! I have horrible nightmarish memories of my days on the Nuvra Ring still fresh in my mind and how much I hated the entire world and nearly everyone in it. So honestly, the thought of a mood change as a side-effect is not appealing to me. But I thought of it this way, if I continue to have headaches and migraines every day I'm going to be miserable and that is going to make me ornery and hate the entire world and nearly everyone in it anyway.
The appeal to me when the doctor mentioned Keppra is that it is believed to act on the nervous system and bring it back to balance. Since migraines are now believed to be the result of an over-active or over-sensitive nervous system I have been considering treatments and medications that are more in tune with regulating my nervous system. We'll see if I'm back on here in a month or two complaining about Keppra or signing it's praises.
Friday, August 24, 2012
Wednesday, July 18, 2012
Ultracet
Trying out another abortive since I can't take triptans and Fioricet didn't seem to be working.
Took my first dose of ultracet on Monday. Took another one yesterday. So far, I'm not impressed :(
Need something today, but I see no point in taking ultracet and I am trying to figure out what has been making me feel nauseous, dizzy, and "yucky" the past 3 days
Took my first dose of ultracet on Monday. Took another one yesterday. So far, I'm not impressed :(
Need something today, but I see no point in taking ultracet and I am trying to figure out what has been making me feel nauseous, dizzy, and "yucky" the past 3 days
DHE Injection
The middle of June brought on a new cycle - a two week migraine. Since nothing was touching it we decided to try a new medication, but this one was a little tricky. An injection of dihydroergotamine or D.H.E. Often used to treat migraines and chronic headaches. Google it, the side effects sound scary. If taken within 24 hours of a triptan it can cause coronary artery vasospasm. (Good thing I avoid triptans like the plague). It can also cause a severe rise in blood pressure and a racing heart rate. So my first injection had to be closely monitored and administered over time. And because of the potential for vomiting, I had to be given benadryl before the shot which would make me sleepy.
It was unpleasant to say the least. The benadryl didn't stop the vomiting and the injection gave me a very similar sensation to triptans - a headache of a different kind. The best way to describe it is to say that I felt like my brain had been poisoned.
I ended up sleeping most of that day and just feeling "yucky" all day, for lack of a better word.
But did it work? That's the most important question of all .... I guess it did. I didn't have a migraine that evening or the next. (Although I did on day 3)
I'd do it again if the migraines were bad enough and the cycle was long enough. But I'm still looking for another alternative.
It was unpleasant to say the least. The benadryl didn't stop the vomiting and the injection gave me a very similar sensation to triptans - a headache of a different kind. The best way to describe it is to say that I felt like my brain had been poisoned.
I ended up sleeping most of that day and just feeling "yucky" all day, for lack of a better word.
But did it work? That's the most important question of all .... I guess it did. I didn't have a migraine that evening or the next. (Although I did on day 3)
I'd do it again if the migraines were bad enough and the cycle was long enough. But I'm still looking for another alternative.
Wednesday, June 20, 2012
Update - 6/20/2012
I haven't been on here in quite a while and that's because I really have nothing new to report. Still having headaches on a nearly daily basis (with a smattering of good days every once in a great while). And still have my "cycles" where I have a severe migraine for several days in a row.
No one really seems to know what to do.
Trying out one more option with Dr Reichert and then my next option may be a new doctor with a new perspective :(
No one really seems to know what to do.
Trying out one more option with Dr Reichert and then my next option may be a new doctor with a new perspective :(
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.
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
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.
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.
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