Topomax

[dolfnlvr]

Okay- I'm going to run through my saga super quick and get to the question.  

About 8 months ago I started feeling nauseaus, dizzy, tired and noticed that one pupil was often bigger than the other even though they were both reactive.  I have very little tolerance for exercise though when this began I was exercising upwards of 45 min/day.  I've been through the ringer of tests (MRI's, Cardiac, 21 vials of blood etc) and all generally normal.  I was told recently that my symptoms are due to migraine and migraine associated vertigo--

After reading what the doctor gave me for info, and some books he recommended, I would agree that the vertigo (not spinning, but off balance and loopy feelings--sometimes hard to concentrate etc) and headaches are likely migraine and the nausea is probably related.  I just wish I knew what trigger put me over the edge and put me in constant migrainville for the past 8 months, because nothing significant changed 8 months ago that I can think of...

Anyway I was put on nortryptiline (and strict diet) at first, but when I upped my dose from one pill to two I began to feel faint (I have a tendency to faint anyway--so--).  I had an appt with a psychiatrist yesterday (one of my previous dr. figured it was all in my "mental" head because tests were normal) and he prescribed topomax and said get off the nortryptiline.  

I took the topomax (smallest dose) last night and today I'm loopier and more tired than ever--no headache, but my headaches weren't really that bad to start with--the dizzyness and tipsy feeling was.  This med has me feeling even WORSE.  But I'm told that it takes awhile to acclimate to the medicine.  Any idea how long??

It is so hard to work under these conditions :-(

Thanks!

[sara12345]

Yes, I had "a light at the end of the tunnel".

I had severe 24/7 migraines for 8 months straight caused by a stroke--extremely difficult to treat, I've been told.  Then I went through a whole series of meds and treatments which I now have mild headaches MOST days, but still have days when I am completely bed ridden with severe migraines, especially if I do a bit too much.  

You're on the right track starting with a daily preventative medication.  One thing I wonder is what have the doctors been doing for you for all this time?  There are other daily medications as well.  The big thing is when you take any pain reliever for 3x a week or more, it leads to unending rebound headaches.  That's what my first neurologist and internal medicine doctor put me on for the first 8 months--a heavy opiate medication which just led to nonstop migraines. I got rid of them both.

Then I got a new neurologist who started me with the daily preventative meds as well as nerve block and trigger point injections during my first visit.  The injections gave me complete temporary relief and I went off the opiates cold turkey which I learned later that the doctors thought I would need rehab.  I also tried accupuncture which did not help.  Neither did a number of the daily preventative medications which all failed me or I had bad reactions to them.  

I really needed the nerve block injections every 4 weeks, but was still struggling a lot.  I also got physical therapy which helped with the tightness in my neck area which intensifies the migraines.  Next came Botox injections which gave me tremendous relief.  And then I found an herbal Petadolex known to reduce migraines by 62% which was noticeably helpful.  Also, I got a prescription skin gel which does not get into my blood stream, so it causes no rebound headaches.  I use it almost daily which settles down most of my developing migraines.

Again, severe 24/7 migraines to mild ones most days.  That's why you need to ask for more treatments as well as keep trying the Topomax or another daily preventative med.

There is a light at the end of the tunnel for you.  Remember I was told that it was extremely difficult to treat me since 1) the migraines were daily and 2) were caused by a stroke.  So just see how much less will probably treat you.

[dolfnlvr]

There is some comfort, and sorrow, in knowing your not alone though, huh?

[LWM1970]

I can tell you I have had the same symptoms, these can be daily for stretches of time. I'm still in the tunnel with you but I'm hoping someone else responds.

[dolfnlvr]

Just a follow-up--

I cut the topomax pill in half for a week.  I at least am more capable of existance that way.  I figure I can up the dose to a full pill after a week.  It is AMAZING what cutting a pill in half will do for your tolerance.  WOW.

As for the brain--I really hate this.  I was a smart, fit, active mom of two when this hit me last summer.  I am still a smart mom of two but the fit is out the window, as I don't seem to be able to tolerate any real exercise.  And my brain feels like a slushy sometimes.  Maybe it would be better described as a frozen margarita, because I swear I feel drunk 1/2 the time.  Sometimes I actually feel like the room is moving--like an earthquake, but mostly I just feel off balance and spacey like I've had two glasses of wine and am well on my way to finishing a third.  I have to concentrate extra hard to do the things that were just second nature to me before all this, and I have had very few "normal" days since February.  

Any of you with these MAV symptoms have a "light at the end of the tunnel" story for me?  I could really use one.  You know how when you get the flu or a bad cold you can look forward to feeling normal again--and before you know it, you just do?  Well, it's starting to have been so long now that I'm starting to feel like maybe normal isn't coming back this time.....

And there just aren't any answers....

[LWM1970]

Hi, I started with basically the same symptoms and have tried topomax. Wow I couldn't stand it for even a weekend. I felt 20 times worse and at that point that was pretty bad. Like you I've under gone multiple tests and yes even the "it might be mental". Because I developed "seizure like" auras I was in the hospital for 5 days of testing. I guess my point is no one has ever tried to help me find out why all this started. My logical sides says if you find the start of the problems then the solution should be easier to find but the doctors don't seem to agree. I hope you find a solution and the cause, then let us know.

[sara12345]

I frequent several of these medical discussion websites religiously.  Yes, you need the MRI to rule out anything more serious, but the vast majority of the time, almost always it seems, there is no answer to why someone has migraines.  But they are not "mental" and still need to be treated.  The topomax is a good start because that medication can help prevent the migraines.  There are many more treatments if it doesn't work, so don't give up.  

So sorry that you have joined so many us that suffer from this malady.

[selmaS]

  I take mine at night too...just b4 bed....not sure that will change nething, but we r all different in how  our bodies handle meds, but most people I talk to have had this same issue with TOPAMAX.....and it is generally a 2 week adjustment period.

Keep pushing for answers.

[dolfnlvr]

Yeah, I have my MRIs, and everything else too.  They thought I might have a tumor there for awhile, so pretty scary all-in-all.

It really is a very long and very drawn out story with a lot of twists and turns (hence the abridged version above) :-).  I am eternally grateful not to have a brain tumor, or any other brain malformation that indicates anything super scary, but this is a physical thing for sure.  Going to the psychiatrist was my doctor's partner's idea (she was out sick that day) and I don't really like him or respect him very much anyway.  But, when you feel like crap and have no answers you'll do ANYTHING.

I've had vestibular testing, which is what led to the follow-up MRI which is what finally led to the Migraine daignosis.  Now, WHY the migraines is currently under investigation, but it is a real physical thing.  

I went to the pscychiatrist anyway because my father suffers from panic disorder, and I know that I have had panic attacks related to all this.  I want to make sure I cover all my bases as we deal with this, and if a psychiatrist can help, well I see no shame in that.  The fact that this guy turns out to have been a practicing physician FIRST and a psychiatrist SECOND was kind of nice to know too.  He agreed that this sounds physical and not emotionally mediated, though he also agreed that anxiety is playing a part (he also asked my why I would think it wouldn't under the circumstances, so nice guy really).  

I'm still going here and there to find out what the heck is going on, glad that it isn't a brain tumor or bleeding or MS or anything like that, but still working toward treatment and hopefully back to normal at some point.  But this new medication is really kicking me in the rear--two weeks you say?  I don't know if I can hold out quite that long...I do take it at night though so maybe it will be quicker than 2 weeks...

Thanks!

[selmaS]

  Hi...I am also on TOPAMAX and it took 2 weeks to adjust to this med...I got extremely tired, could not keep my eyes open and thought this is not going to work, but after the 2 weeks it all leveled off and  it is working.

Did u get copies of ur MRI and the report that way u can get another opinion....there must be a reason u feel like u do....and there r some conditions that r overlooked  or considered an incidental finding so it is not reported back to the patient...and it could be the culprit.

Always ask for copies of the MRI's when u register for them and ne other testing u have done, it makes it easier to get  a 2nd opinion.