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Dragnlance
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Neuro appt today
« on: Feb 22nd, 2006, 10:45pm » |
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Hi all,
I finally made it to a new Neuro in town today. She has only been in the area for just under a year. The word around town is that she specialized in headaches. (i have heard things like this before)
Anyway I am happy to report, that she does in fact understand headaches, and has an uncommon knowledge of cluster headaches. We had a very long and what I consider to be a fruitful conversation. After having so many doctors that know nothing, it was a delight to talk to someone who actually does know what she is talking about. I was also supprised, after she asked me how I felt about pain killers, (I laughed at her and told her that pain killers dont work) she told me that she gets people all the time who are only attempting to get the drugs. I find this concept alien.
Anyway, Great Falls Montana actually has a doc who understands CH!!!!!!!!!!!!!!!!!!!!!!!!!
WOOOHOOO!
Lance
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BikerBob
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Re: Neuro appt today
« Reply #1 on: Feb 22nd, 2006, 11:30pm » |
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on Feb 22nd, 2006, 10:45pm, Dragnlance wrote:Hi all,
I finally made it to a new Neuro in town today..
Anyway, Great Falls Montana actually has a doc who understands CH!!!!!!!!!!!!!!!!!!!!!!!!!
WOOOHOOO!
Lance |
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Why did she recommend Lamictal ? Do you have bipolar disorder or convulsions?
BB
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Dragnlance
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Re: Neuro appt today
« Reply #2 on: Feb 22nd, 2006, 11:44pm » |
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According to her, antisiezure meds like this are supposed to work by preventing the CH from coming back. I have not taken any because I want to know if any here has tried it.
Not bipolar or have siezures
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Charlotte
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Re: Neuro appt today
« Reply #3 on: Feb 28th, 2006, 4:00pm » |
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How did the appt go?
Have you heard back from anyone else who tried the Lamictal?
I have two half-sisters who are bi-polar and there seem to be some similarities.
They have both used Lithium and that is one medicine that is also suggested for ch but I haven't tried it. It scares me.
They also have a problem getting doctors to understand that a cyclical condition change and medications need to be readjusted.
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marlinsfan
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Re: Neuro appt today
« Reply #4 on: Feb 28th, 2006, 4:05pm » |
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on Feb 22nd, 2006, 11:44pm, Dragnlance wrote:According to her, antisiezure meds like this are supposed to work by preventing the CH from coming back. I have not taken any because I want to know if any here has tried it.
Not bipolar or have siezures |
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Topomax is a seizure med, and it is given widely for headaches (clusters and migraines) as preventatives.
It didn't work for me, but I've seen it work for others.
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Lizzie2
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Re: Neuro appt today
« Reply #5 on: Feb 28th, 2006, 10:26pm » |
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Glad you liked the doc and had a good appt, Lance!! 
I've taken lamictal - saw your other thread but haven't had much time to post lately and reading this one just reminded me.
I was started on lamictal as a preventive for basilar migraine. It helped with those a LOT. I didn't really get them very often to begin with, but after starting the lamictal, I didn't get any for like 3 months. I was up to 100mg twice a day when I came off it.
I don't think my neuro ever expected it to help with the CH, and in fact it was almost a shot in the dark because we were just trying another thing on the list while waiting for lyrica to come out (which I've since tried and stopped). Wish I could give a better report on lamictal and CH, but it didn't seem to affect it one way or the other for me.
I came off the lamictal somewhat recently as I was simplifying (sp?) my med list down some. It was the only antiseizure med I've ever taken that didn't give me any side effects at all. I've taken many drugs in this category, and I truly believe that some of them have left a permanent mark on me - depakote and topamax, in particular.
Make sure you watch out for any type of rash while taking lamictal. It can cause a very serious rash as part of Steven Johnsons Syndrome, and while this is very rare, it can be life threatening. However, just to add to the confusion, lamictal can also cause a completely benign rash as a "normal" side effect to the med. It would be far more common to get the latter described, but since it's impossible to tell the two apart in the early stages, you always need to seek medical treatment for a rash on lamictal.
Oh and also - can't remember if you are chronic or not, but lamictal could take quite awhile to take full effect. Seems as though some of the antiseizure meds take even 3 months to start working - which can make them rather pointless for most CH'ers - but a chronic has more "time" to play with...heh Usually a good idea to give a preventive like this a good 3 months (unless you start experiencing other side effects or really just want to try something different) for a fair trial. With your doc's order, of course!!
Hope she gave you a good schedule on how to increase the lamictal slowly. That's one of the key things with lamictal - if you ramp up the dose too fast, you may put yourself at greater risk for getting SJS and other side effects.
It's probably the only antiseizure med that I'd willingly take again somewhere down the road, if I have to.
Best of luck!!
Carrie
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| « Last Edit: Feb 28th, 2006, 10:27pm by Lizzie2 » |
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Dragnlance
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Re: Neuro appt today
« Reply #6 on: Mar 1st, 2006, 10:55am » |
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Hi Carrie,
Thank you for your insight on Lamictol. I decided to try it, and am on the 5 week rampup pack. Starts very small doses and works up. So far no rashes after 5 days. I admit to being very leery of antisiezure meds after Topomax, but know several people taking Lamictol for siezure issues, with no side effects.
I am chronic, and I think that is why the Doc decided to try this. What the heck, if it doesnt work, just one more on the list... a very long list.
I hope you are doing better Carrie!!
Lance
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Lizzie2
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Re: Neuro appt today
« Reply #7 on: Mar 2nd, 2006, 6:51pm » |
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I get leery after topamax, too...
But keep in mind - (if you still have a mind left, after topamax!) - topamax is the only antiseizure med to work on the temporal lobe. It seems to be the only one that causes such god-awful cognitive side effects.
I try to keep that thought in my mind when considering a new antiseizure. As long as it's different enough from topamax, then I don't have the same fear. LOL
I swear one day they're going to discover that topamax is really really bad and yank it the hell of the drug markets. At least that's my hope. I hate that this drug is pushed and pushed - and yes it's done some good things for people, but I've seen people damn near destroyed by this med!
I know it almost bombed me out of my 3rd year at Penn State, and for several months, I carried around the feeling that I was crashing and burning as a pianist. It wasn't me - I was a very good pianist - it was the topamax messing with my brain and making me feel like a total failure because my memory and concentration were shot. Angering, when I think about it.
I still take concerta (an ADD med like ritalin) daily because I have trouble with memory and concentration - a problem I never had prior to taking topamax.
I don't have anything bad left over from the lamictal - at least not that I know of! They don't even seem like they're in the same category to me - and that's simply because they act so differently on the brain. We lump the antiseizures into one category, but when you break them down, they're really quite different from one another - and that's definitely a relief for those who rely on them for various medical conditions! If one doesn't work or has terrible side effects - just keep digging...there's one out there for practically everyone. LOL
Best of luck!!
Carrie
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