April 2015
Oxcarbazepine is clearly not working. In the last 3 months I've had 8 days without a headache and an increase in the number of migraines. I need to slowly back off of Oxcarbazepine and then I can try Qudexy. I'm nervous because of the known side effects of the other medications that are similar, but I need relief! I don't know which is worse, the side effects or the headaches. When I am not having daily headaches I think the side effects are unbearable and that I'd rather have headaches since my functioning is being impaired anyway. But when I'm having daily headaches my functioning is being impaired to the point that I think I'd rather have the side effects.
This stuff is supposed to be formulated in such a way that it prevents the side effects. Lots of people who couldn't use Topomax or Trokendi because of the side effects are saying they don't have any side effects on Qudexy. I'm trying to remain hopeful. I know there are still plenty of medications and treatments out there .... I've just got to find the right one or the right combination.
Tuesday, April 28, 2015
More cocktail experiments
August 2014
A new anticonvulsant (like Topomax) is out. This one is time release, unlike Topomax, and people are reporting significantly fewer cognitive side effects with it. It's called Trokendi. Much like Topomax I have to slowly increase the dosage.
Headaches are much improved, but I am the small percentage of people who experience the cognitive side effects.
October 2014
We decide to experiment for a few months with the dosage, up and down and all around. The side effects don't go away.
She tells me that her colleague is going to be part of a study in the next few months and he will be administering a new study medication to his patients. It was used in Australia with great success and some other studies have been done in the US with success. It's perfectly safe. She needs to talk to him more to find out what the qualifications are, but two that she's aware of - no nerve blocks in the past 3 months and no Botox in the past 3 months. No problem, it's been quite a while since I had any of that.
November 2014
I inquire about her colleague and this new experimental medication. You can't be on anything that's working for you. So I'd be disqualified based on that.
December 2014
I go off Trokendi. I can't handle the side effects.
Yet another part of the Topomax cocktail is a potassium channel blocker so we introduce Oxcabazepine to my cocktail. I have great hopes for it since it's used for Trigeminal neuralgia. I figure if the SPG Block worked so well then the issue is, at least in part, my Trigeminal nerve (I've long suspected this, actually). I am to slowly increase the dosage over the next month.
It seems that every time I bump up the dosage I have a few days of relief. So I continue to be hopeful.
January 2015
Still hopeful regarding the Oxcarbazepine. How high can I go? I knew I was at the low end of the scale and that I could increase, but wasn't sure where the ceiling was. She says I can go to 1200 mg a day (600 mg 2 times a day).
A new anticonvulsant (like Topomax) is out. This one is time release, unlike Topomax, and people are reporting significantly fewer cognitive side effects with it. It's called Trokendi. Much like Topomax I have to slowly increase the dosage.
Headaches are much improved, but I am the small percentage of people who experience the cognitive side effects.
October 2014
We decide to experiment for a few months with the dosage, up and down and all around. The side effects don't go away.
She tells me that her colleague is going to be part of a study in the next few months and he will be administering a new study medication to his patients. It was used in Australia with great success and some other studies have been done in the US with success. It's perfectly safe. She needs to talk to him more to find out what the qualifications are, but two that she's aware of - no nerve blocks in the past 3 months and no Botox in the past 3 months. No problem, it's been quite a while since I had any of that.
November 2014
I inquire about her colleague and this new experimental medication. You can't be on anything that's working for you. So I'd be disqualified based on that.
December 2014
I go off Trokendi. I can't handle the side effects.
Yet another part of the Topomax cocktail is a potassium channel blocker so we introduce Oxcabazepine to my cocktail. I have great hopes for it since it's used for Trigeminal neuralgia. I figure if the SPG Block worked so well then the issue is, at least in part, my Trigeminal nerve (I've long suspected this, actually). I am to slowly increase the dosage over the next month.
It seems that every time I bump up the dosage I have a few days of relief. So I continue to be hopeful.
January 2015
Still hopeful regarding the Oxcarbazepine. How high can I go? I knew I was at the low end of the scale and that I could increase, but wasn't sure where the ceiling was. She says I can go to 1200 mg a day (600 mg 2 times a day).
Saturday, April 25, 2015
Sphenopalatine Ganglion Block
June 12, 2014
A new treatment is out. Dr. Williams is going to be learning how to perform it and she wants to learn on me and a few of her other patients when the specialist comes to town. It's an SPG Block (Sphenopalatine Ganglion). A small rubber hose is inserted in my nose while I hang partially upside down and lidocaine is sprayed into my nasal cavity. I need to be upside down so the lidocaine can soak my SPG for several minutes and not simply run down the back of my throat.
I have a migraine that evening. I am not optimistic.
But then I am virtually headache and migraine free for the next two and a half weeks!
So there I am, upside down, letting my SPG soak up the lidocaine. The little strips on my cheeks are temperature strips. It's how the doc knows she got the lidocaine in the right spot. The SPG regulates, among other things, the temperature of the skin of your face.
July 11, 2014
I return for another SPG Block. Again, I have a migraine that evening. But this time the block only lasts about 2 weeks. It's supposed to be a sort of cumulative effect. Each block is supposed to last longer and longer. We decide to stop, they obviously aren't working as they should.
A new treatment is out. Dr. Williams is going to be learning how to perform it and she wants to learn on me and a few of her other patients when the specialist comes to town. It's an SPG Block (Sphenopalatine Ganglion). A small rubber hose is inserted in my nose while I hang partially upside down and lidocaine is sprayed into my nasal cavity. I need to be upside down so the lidocaine can soak my SPG for several minutes and not simply run down the back of my throat.
I have a migraine that evening. I am not optimistic.
But then I am virtually headache and migraine free for the next two and a half weeks!
So there I am, upside down, letting my SPG soak up the lidocaine. The little strips on my cheeks are temperature strips. It's how the doc knows she got the lidocaine in the right spot. The SPG regulates, among other things, the temperature of the skin of your face.
July 11, 2014
I return for another SPG Block. Again, I have a migraine that evening. But this time the block only lasts about 2 weeks. It's supposed to be a sort of cumulative effect. Each block is supposed to last longer and longer. We decide to stop, they obviously aren't working as they should.
Friday, April 24, 2015
Bring on the cocktail
January 2013
First medicine Dr. Williams prescribes is Felodipine (generic for Plendil). It's a calcium channel blocker just like Verapamil. I had luck with a calcium channel blocker in the past, maybe I'll have luck again.
Nope, no luck. I thought maybe I saw a very slight decrease in headaches so we stuck with it. And no side effects, fortunately.
So the thinking is this.... Topomax is like 6 drugs combined into one. So if it worked, but the side effects were awful, then maybe we can recreate it. Get the relief without the side effects by introducing one medicine at a time until we find out which combo does it for me.
February 2013-May 2013
Second medicine (added to the Felodipine) is Acetaloamid. I am told this is a medicine for altitude sickness. Well! We've found what part of Topomax causes the tingling in my face and fingers. But there is no decrease in my migraines/headaches at all.
March 2013
I've had an Occipital Nerve Block before, but it was in the greater occipital nerve and Dr. Williams believes the problem isn't my greater occipital nerve, but may be my lesser occipital nerve. Based on where the pain is located I believe she may be right so I get another nerve block, but this time in my lesser occipital nerve - nothing.
April 2013
I love Dr. Williams for so many reasons and one is that she never runs out of options or ideas. Another is that she is CONSTANTLY reading about new procedures, new causes, attending meetings and conferences, having pow-wows with other headache specialists. Something she just learned about days before my appointment is that some migraines are caused by the release of histamine. It can be seen by a hyper-sensitivity. Tags in clothing drive people crazy, they have been diagnosed with IBS because their stomach is a mess, etc. I fit the bill so we decided to try a Histamine-2 Blocker. This is added to Felodipine and Acetazolamid for 1 week to see if anything happens.
Nope.
May 2013
I stop taking the Acetazolamid and instead start taking a Gabapentin (Neurotin). In case neuralgia is the cause of my migraines. No change at all.
June 2013
I do experience some level of nervous energy. We add Mirapex to the cocktail. If we can stop the restless leg syndrome and I can get enough sleep each night, then maybe I'll have fewer migraines.
After one month we stop the Mirapex as it's obviously not helping at all.
June 2013
Another component to the Topomax was a tricyclic antidepressant so we add Amitriptyline to the Felodipine and Gabapentin.
June 2014
I have been on my medicine cocktail for over a year. I have gone from a headache 30-31 days out of the month to about 25 days a month. But that's all the relief I've gotten.
First medicine Dr. Williams prescribes is Felodipine (generic for Plendil). It's a calcium channel blocker just like Verapamil. I had luck with a calcium channel blocker in the past, maybe I'll have luck again.
Nope, no luck. I thought maybe I saw a very slight decrease in headaches so we stuck with it. And no side effects, fortunately.
So the thinking is this.... Topomax is like 6 drugs combined into one. So if it worked, but the side effects were awful, then maybe we can recreate it. Get the relief without the side effects by introducing one medicine at a time until we find out which combo does it for me.
February 2013-May 2013
Second medicine (added to the Felodipine) is Acetaloamid. I am told this is a medicine for altitude sickness. Well! We've found what part of Topomax causes the tingling in my face and fingers. But there is no decrease in my migraines/headaches at all.
March 2013
I've had an Occipital Nerve Block before, but it was in the greater occipital nerve and Dr. Williams believes the problem isn't my greater occipital nerve, but may be my lesser occipital nerve. Based on where the pain is located I believe she may be right so I get another nerve block, but this time in my lesser occipital nerve - nothing.
April 2013
I love Dr. Williams for so many reasons and one is that she never runs out of options or ideas. Another is that she is CONSTANTLY reading about new procedures, new causes, attending meetings and conferences, having pow-wows with other headache specialists. Something she just learned about days before my appointment is that some migraines are caused by the release of histamine. It can be seen by a hyper-sensitivity. Tags in clothing drive people crazy, they have been diagnosed with IBS because their stomach is a mess, etc. I fit the bill so we decided to try a Histamine-2 Blocker. This is added to Felodipine and Acetazolamid for 1 week to see if anything happens.
Nope.
May 2013
I stop taking the Acetazolamid and instead start taking a Gabapentin (Neurotin). In case neuralgia is the cause of my migraines. No change at all.
June 2013
I do experience some level of nervous energy. We add Mirapex to the cocktail. If we can stop the restless leg syndrome and I can get enough sleep each night, then maybe I'll have fewer migraines.
After one month we stop the Mirapex as it's obviously not helping at all.
June 2013
Another component to the Topomax was a tricyclic antidepressant so we add Amitriptyline to the Felodipine and Gabapentin.
June 2014
I have been on my medicine cocktail for over a year. I have gone from a headache 30-31 days out of the month to about 25 days a month. But that's all the relief I've gotten.
Tuesday, April 21, 2015
Thanks to this blog
I have had the hardest time remembering what medications I've been on, when I started taking them, when I stopped taking them, what dosage I took, what the side effects were, etc ...
Thanks to this little blog I was able to help Dr. Williams out. In fact, she said she wished all her patients were like me. She tells me that many of her patients are even too busy to keep a headache journal. What? Your doctor does NOT have ESP. If you can't tell him/her when you have headaches and how bad they are and how long they last then HTF is your doctor supposed to help you?
Thanks to this little blog I was able to help Dr. Williams out. In fact, she said she wished all her patients were like me. She tells me that many of her patients are even too busy to keep a headache journal. What? Your doctor does NOT have ESP. If you can't tell him/her when you have headaches and how bad they are and how long they last then HTF is your doctor supposed to help you?
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