Migraine preventives

Who takes a migraine preventive for their MAV? What do you take?

I was recently prescribed zonegran, but haven’t started it yet…
Does anyone else take it?

(In the past, I have tried propanonol, verapamil, elavil, prozac, topomax, neurontin and depakote with varying reactions. I won’t bore anyone with details at the moment, but will gladly answer questions on my experiences.)

Anniebee-

Bore me with the details please! I am not to the stage where they want to do meds just yet (they are still testing me for other things).

But I am VERY sensitive to meds and so I worry about having to go thru med trial and error. My neuro suggested he would start with the anti-convulsants (depakote and tegratol) first because of the type of aura I get.

~MK

i second the motion, tell us everything your willing to share about the drugs you have tried. I am in that boat right now, having tried propanolol, topomax, and currently on zoloft, zofran, and trazadone…

I wrote a long post and had computer trouble and lost it! Drat!
I’ll try to get back tonight and write again…

MK…good to see you over here. I’m alborde from the Dizzy Lounge.

take care all,
anne

Nice to see you too!

Can’t put my pic of the colonel here tho… :frowning:

~MK

— Begin quote from “mentalkeyboard”

Anniebee-

Bore me with the details please! I am not to the stage where they want to do meds just yet (they are still testing me for other things).

But I am VERY sensitive to meds and so I worry about having to go thru med trial and error. My neuro suggested he would start with the anti-convulsants (depakote and tegratol) first because of the type of aura I get.

~MK

— End quote

Hey

Have you had a look at the article on Lamotrigine? Lamotrigine is an anti-convulsant that is used for prolonged auras and looks like it is pretty successful at treating MAV.

I’m thinking of trying it soon… but I want to give Clonidine and Acetazolamide a go first.

I have tried verapamil(very effective but can’t tolerate),propranolol(no effect for me),diltiazem(very effective but can’t tolerate),flunarizine(very effective but can’t tolerate),cinnarizine(very effective but can’t tolerate),nortriptyline(can’t tolerate, unsure of effectiveness),sodium valproate(still trialing).

The calcium channel blockers seem to be really really effective for me, but I can’t tolerate them.

Adam

Just wanted to update… I spoke to my doctor today and she prescribed me Lamotrigine given the results of the study I’ve posted on this site.

Before I start taking it I need to wean off Pizotifen as, strangely enough, after 2 years, I am starting to become less tolerant of its side effects. Today I feel like I’m on a severe caffeine high (shaky, racing thoughts etc).

I will let you know how Lamotrigine goes.

Adam

i just read the article on Lamotrigine. adam, thanks for offering to keep us updated on how it works for you. i’m curious. and i have my fingers crossed for you.

i should preface this by saying that my case is complicated. i have been diagnosed with a weakness on my L side (due to a viral infection), BPPV in both ears, and MAV. i believe that i developed the MAV as a result of the other inner ear trouble, but i can’t be sure. i do know that i never had a migraine headache until after the inner ear damage and that my headaches are always on my L side.

from what i understand, there is a hierarchy of drugs for MAV. the first ones that doctors try are the beta-blockers (e.g., proponanol), then the calcium channel blockers (e.g. verapamil), then the antidepressants (e.g. elavil), and finally the anti convulsants (e.g. topomax). (i have a med journal article that explains this, but i have a hard copy and no on-line link).

i had little luck with beta-blockers. my blood pressure went too low and make me dizzier.

verapamil did nothing for me.

depakote (anti-convulsant) helped with the migraines. i developed actual migraine headaches and was having up to 12 a month. depakote dropped it down to 4 a month. i was on it for 2 years. the only side effect was weight gain.

topomax (anti-convulsant) eliminated vertigo and headaches amazingly well, but had side effects that i couldn’t tolerate. i tried really hard to tolerate them because it was amazing how well it made me feel.

for the past year and a half, i’ve been doing acupuncture and chinese herbal therapy. it has virtually eliminated any head pain. i have an actual migraine about once every 6 weeks (which is much better than 4 a month on depakote).

but i still have the daily dizziness and other symptoms, such as visual disturbances, sensitivity to light and noise, disorientation, and fatigue.

my migraine specialist (who also works closely with my neuro-otologist) is recommending zonegran and i’ll probably give it a try.

sorry it’s so long.
others share their stories…
and feel free to ask questions.

take care,
anne

Thanks Anne and Adam for your info…

I am worried about being put on a drug merry-go-round. My system is so sensitive to anything that I have a hard time even getting myself to try anything because I am worried about getting a bad side effect. It took me a week to talk myself into trying clarinex…lol.

But I am one of those people with weird side effects. I get hyper on benedryl…I can’t sleep on nyquil. 10mg of predinsone gave me an irregular heartbeat and psychosis. I’m just not a lucky person with meds. But I realise that if I do have MAV (which the doctors seem pretty certain I have) meds may be my only option.

I asked my Dr. why he is starting with anti-convulsants and he said it is because my BP is 120 over 56. Don’t worry… I have always had low BP. But he said the other things might be more dangerous to me than it is worth.

Keep us posted on your trial and error.

~MK

PS~ What was it about the meds you couldn’t tolerate.?

MK,
i think that staying away from the beta-blockers is very wise. i also have borderline low blood pressure and was a mess on beta-blockers. i tried them twice (3 years apart) and a super low dose the second time and it was bad both times. of course, the second time, i knew why i was feeling so bad, went to CVS and checked my blood pressure, and went off after 3 days of trying it.

if you try topomax (i can’t remember what anti-convulsants you were considering), i’m sure your doctor will put you on a plan to step up slowly. this is incredibly important. let your doctor know that you are sensitive to medication. you may start with 25mg and take a couple of months to work up to a therapeutic dose.

it’s funny, but i also get hyper on benadryl.

you asked what i (and adam) couldn’t tolerate on the drugs. i was avoiding details because i don’t want to scare anyone away from a drug that may potentially help them. just because i had a bad reaction doesn’t mean that others will. know what i mean?

My worst side effects were with topomax. i was incredibly irritable and mad at everyone (normally i’m the annoyingly cheerful optimist) and i couldn’t sleep at all. i had to take sleeping pills which eventually quit working. and the lack of sleep just fueled the irritability…

On neurontin (another anti-convulsant), i couldn’t think straight at all. i was confused about things like whether reverse in my car meant forwards or backwards. i was confused about whether to push or pull my office door. i couldn’t have alphabatized a list to save my life. i was a mess.

other drugs i’ve tried just seem to not have any effect at all: verapamil, elavil, prozac, for example.

i should also mention that i am on the BC pill continuously, meaning i skip the placebos and start the next pack. i just have a period 4 times a year. this is supposed to cut back on hormone-related migraine issues. it doesn’t seem to do a lot for me, but i don’t mind being on it either.

take care,
anne

anne-

Funny about you being on BC…When I was younger I could only tolerate depo because it has no estrogen and I am estrogen intolerant and that was the only time in my life I experienced classic migraines. Right now my husband and I weren’t trying not to kave another child (we weren’t trying to have one either) so we haven’t been doing anything specific to avoid pregnancy for the last 3 years. I am diabetic so it is difficult for me to conceive so we figure if it happens it happens…

I wonder if I tried a progesterone pill continuously if that would even out my estrogen levels. I have been tested and my levels aren’t “high”…but they could be too high for me. I wish there was a pill they could give you to remove some estrogen…lol.

I’m glad you let me know what you didn’t tolerate about the meds…I will try whatever is suggested… I just want to know what I might be in for…lol.

~MK

anniebee: i have a similarly complicated case, but I believe mine is entirely related to migraine. I have left sided weakness (directional preponderance), and unexplained gaze evoked nystagmus to the left in darkness (or under Frenzel goggles). the hierarchy of drugs you describe is very accurate and sounds like a pretty safe way to progress through a trial of migraine treatment. beta blockers did me no good either, and god do they make you feel fatigued! everyone looked at me and said “wow, you look awful…”. verapamil worked really really well for me… i could hardly believe how great i felt. but i would get palpitations and chest pain, and eventually after a few weeks use nausea,vomiting,diarrhea and muscle twitches (myokemia i believe). my neurotologist said i may have a yet undiscovered calcium channelopathy (a wild guess) but it would explain some of my intolerance of calcium channel blockers. thanks for mentioning topamax… i need to remember thats something on my list that i need to try after lamotrigine. the weight loss could be a real worry for me though as i am male, 6ft and 145lb. can you write more about your visual disturbances? i ask, because i have severe visual disturbances… my vision is covered in floaters, shadows around objects, bright spots and i feel like the visual field of both eyes overlap each other. it sounds like anticonvulsants work well for you, so perhaps lamotrigine is another one for you to try? i’ll let you know how i go with it.

mentalkeyboard: the drug merry-go-round isn’t fun, but i figure if i find something tolerable and effective it will be worth it. i am extremely sensitive too, same problems with benadryl etc. the important thing seems to be that side effects from these meds are almost always reversible very quickly, and you generally only need low doses of meds for migraine than you would use for their primary purpose.

Adam

you asked about my visual disturbances…

  1. i see sparks or shooting star like bright images dash in front of my eyes.
  2. patterns seem to jump about and move in disturbing ways. conference center carpets are the worst.
  3. i have a lot of trouble with depth perception.
  4. i get tunnel vision (where everything is dark on the periphery) when fatigued.

you mentioned topomax and weight loss. i think it happens mainly because it changes the way you taste. anything with sugar tasted horrible to me. my sweet sister-in-law baked me a cake for my birthday and i could only eat one bite of it. i felt so bad because i usually love homemade sweets! i think you could avoid weight loss if you made a point of eating high protein shakes and made a point of eating at meal times even though you aren’t hungry or your taste buds are “off”.

but i hope you don’t have to try topomax. i’ve got my fingers crossed that this drug you are currently trying will be a success story for you!!

thanks for that anniebee.

weaning off pizotifen isn’t going to be fun… ! i’ve come to rely on it… it seems as soon as i go off it i get a ridiculous rebound headache that can last 2-3 weeks. i also get lots of attacks of room spinning vertigo. but i guess i will have to put up with it until i find something to replace it. hoping lamotrigine is it. i have a feeling it is going to be effective, since most meds do work pretty well for me, but tolerability is going to be the obstacle.

Adam

I’ve been on Epilim for a about two months…and it seems to be helping heaps.

I tried all the others…beta blockers, calcium channel blockers etc. but they had side effects.

The Epilim has almost zero side effects for me, and it’s working. The dizziness is 70-80% improved.

Hi Adam

Tib here from the Dizzy lounge forums. I was just wondering what your reason was for going off Pizotifen? I’m on two a night now as suggested (also checked with my Dr) and it seems I’m back on track after my relapse. I’m sure I’ll get other relapses when I’m run down or have to get up early or whatever. I’ve only been on it now around 2 months. I presume the migraines and dizziness get less frequent with time?

Cheers

Tib.

Hi Tib

I still take Pizotifen, but only 0.5mg/day. Unfortunately at higher doses than this I suffer from nausea,
vomiting and diarrhea. There are a number of other meds I have this same issue with.

Adam

I am going to try Topamax, but I’ve been hit with a bad head cold and will start it when this cold is gone. I look forward to seeing which med. will help and getting a life back again. Thanks for reporting on these different meds.

Charisse

Sounds like a good idea. Best time to start meds is when you’re feeling well and nothing else is going to cloud
your experience of what the meds are doing.

One thing that I find really important, and can’t stress enough, is that if you have a few bad days shortly
after taking them - don’t stop!! Most people tend to stop taking meds as soon as the next time they have a bad run after taking them.
Those that stick with it and keep dosing themselves properly (ie. don’t go up and down depending on whether you feel bad or not),
often feel a lot better after they recover from the bad period they had!

Adam

Well I went back on what I said and started the Topamax yesterday. I took a small dose and yes already I feel like stopping. It always happens this way for me. But I thought since I am sick anyway why not stick it out. I can’t go out with this cold so I’ll stay with it. I just need to figure out which would be the best time for me to take it.

Charisse