Help please:) First time on meds: Lamictal or Topamax?

I am hoping for some advice from all of your wise personal experiences:)

I am pretty new to all this…I started showing symptoms of MAV this summer, and have been “on a boat” dizzy for 6 weeks (5 weeks continuously with fluctuations better/worse). In addition, I have new “pull to the right” disequilibrium that started last week as well that makes it really hard to walk when it hits (10-15 times a day). I think the biggest issue for me is the brain fog that accompanies it, and also the speech issues (I stutter or talk slow if I talk while upright, it goes away when I lie down).

I have done the elimination diet for 3 weeks, just started Magnesium 400 mg a couple days ago, and am about to start B-2 and Co-Q 10.

I have improved dramatically from the first two weeks of dizzy bed-bound-stupor, and had hoped that diet and lifestyle changes would get me through a lot of this. I was hoping to wait a few months to start meds, but with new symptoms starting last week (tingling/numbness right arms and leg) and new right sided pull that makes me fall, I think it’s time to start meds. I’d like to be able to drive, take care of my kids and start exercising (and enjoying life).

My new neuro actually knows about MAV, wooohoo! She is not 100% convinced between MAV and epilepsy like symptoms, and wants to start me on either Topamax or Lamictal. Her preference is Lamictal because I am already having tingling feelings and brain fog, and Topamax side effects can cause those, too. We discussed Lamictal risk of serious rash side effects, and will go slow. She said it can take 4 months to be effective (I did read a case report that showed good success with migraine and aura after a month though so fingers crossed)

I searched “lamictal” and read every post on here about it last night, including the drug sheet, the black box warnings, and the “migrainously yours blog” , etc. I saw a lot of discussions about *thinking *about trying it, but not many who were on it long term.

My Questions:

  1. Is there any advice about personal experience/success with Lamictal? It seems very promising and fewer side effects (if I don’t get the potentially fatal rash or asceptic encephalitis!) I know everyone is individual.

  2. Is it too soon to start meds? Should I give the diet and supplements another month? It just seems like meds are an inevitable part of this if I want to be functional again, and I should get the process started?

  3. I have an appointment at a university in 10 days…do I keep that appointment (made a month ago before I found this new neurologist who finally knows whats going on), or just stick with my new neuro? Coincidentally my new neurologist trained at that University with the Dr. I am going to see.

  4. Should I try to get into Mayo clinic (I almost feel like it’s not necessary now that I have Dr. who understands MAV)? I am currently on a wait list and my new GP says he can get me in sooner if I need to.

Thank you for any help/advice you can give. I am so happy to have a Dr. who doesn’t just think I’m crazy, and think I am ready for this next step, but am a little scared, too.

— Begin quote from ____

  1. Is there any advice about personal experience/success with Lamictal? It seems very promising and fewer side effects (if I don’t get the potentially fatal rash or asceptic encephalitis!) I know everyone is individual.

  2. Is it too soon to start meds? Should I give the diet and supplements another month? It just seems like meds are an inevitable part of this if I want to be functional again, and I should get the process started?

  3. I have an appointment at a university in 10 days…do I keep that appointment (made a month ago before I found this new neurologist who finally knows whats going on), or just stick with my new neuro? Coincidentally my new neurologist trained at that University with the Dr. I am going to see.

  4. Should I try to get into Mayo clinic (I almost feel like it’s not necessary now that I have Dr. who understands MAV)? I am currently on a wait list and my new GP says he can get me in sooner if I need to.

— End quote

Hi - I’ll take a stab at your questions, though I’m no expert… :wink:

  1. I tried Lamictal and lasted 5 days. I had horrible insomnia no matter what time of day I took it. (Seems just about everything gives me insomnia, though, so it could just be me.) Anyhow, I gave it up because I couldn’t function on no sleep. I think that was the only SE I had, but it was a few med trials ago, so I may not remember them all…

  2. I don’t think it’s too soon to try a med. I’d keep up with the diet, etc., too, though, so you can find any triggers you may have. (I can’t imagine just changing your diet would get you from bed-bound dizzies to perfectly normal…)

  3. I think I’d keep the appointment since you’ll be seeing the doc who trained your doc. Maybe he/she could clear up the last bit of “which is it?” that your current doc seems to be having. At least that way you could get a second opinion on the MAV vs. epilepsy issue, if nothing else.

  4. I’d skip the Mayo. I think if you search around on this site, you’ll find a fair number of folks have gone there and haven’t found much help.

Hope that helps! Best of luck on your new med, whichever you choose! :wink:

Personally I would not avoid Topamax due to worries that you are already experiencing brain fog. Migraines certiainly cause brain fog, as does Topamax. But I have found that for the most part Topamax prevents far more brain fog for me than it causes. By preventing my migraines, it reduces most of the brain fog issues I was having. Yeah, I might be getting small amounts of it from the side effects of the medicine, but they are miniscule compared to what I was experiencing due to the migraines. Not everyone can tolerate Topamax, but if you DO tolerate it, I don’t think you will find the brain fog to be bad on it compared to what you are currently experiencing.

1 - No experience with Lamictal.

2 - With the severity of your symptoms plus some new ones, I’d start meds now if I were you. But don’t give up on the diet and lifestyle changes.

3 - If you have good insurance, a second opinion is never a bad idea.

4 - I like how Erika put it, and I agree with her: skip the Mayo, as you’ve found someone who actually knows what MAV is, and can also go see someone who trained her!

Like Jamie, I’m on Topamax and haven’t had too much of the “Dopamax” effect, though I won’t say there’s none at all: I notice some word-finding issues with words I seldom use.

I’m happy to hear that you’ve had such good results from the diet and lifestyle changes. Not only does that help you to feel better physically, but it gives you back some sense of control. Take care, and good luck!

Thank you so much Erika, Jamie and MaryAlice :smiley:

I guess I’ll just go for it…the allure of minimal side effects sounds promising, so I think I’ll try lamictal first, and if I get the rash or it doesn’t help in the next few months I will try topamax next. It seems like a great option. From what I’ve read on here, it may be several meds over many months until I get the right one/combo.

Thank you all for sharing your successes and experiences…it is reassuring to hear that meds are a good next step for me at this point. I’ll definitely keep up the diet and lifestyle (since it’s so much fun and all:). I’m glad Topamax is such a good fit for you Jamie. I have read a lot of good things on here about it, but the brain fog/speech issues were concerning me b/c those are the most debilitating for me already. Good to know it is less than off meds and gets better with time.

You guys are right…going to USF is a good move and should fit in nicely with what my Dr. is already doing. I had read some Mayo posts, and was thinking that it might complicate things. So glad to finally find a local Dr. who knows about it! It is really nice to have others reassure me.

Oh boy…now I’ll pick up my lamictal tonight. It may take me a couple days to get up the nerve to actually start them;)

The Heal your Headache Doctor says try the diet first.

If you can at all, I would try the diet first. For 2 months, and then another 2 months before adding in foods one at a time to discover triggers. And do the supplements.

Just my 2 cents :slight_smile:

K

Thank you, Kathleen:)

That is what I wanted to do, but got worried that with new symptoms starting this week I am losing ground. I still can’t drive, have to have babysitters here for the kids b/c I can’t care for them alone, and if I walk around for more than 3 minutes the head fog, stuttering and ataxia really kick up. I am much better than my crash last month, but still seems so far from what I need to function. I may pick up the lamictal, and wait a week or so. Of course today is a lot better than a couple days ago when I had my worse day in 2 weeks!

I feel like it takes 3-4 months to work, so better get started? I guess I have given up that this is just going to go away with diet and lifestyle alone.

You have given me good pause though…I’ll see how the week goes. Thank you!

Wow Luna,

Sounds horrible I’m so sorry.

You can at least try Valium during this time. It’s an as-needed drug, not a preventative every day drug. It helps me that is for sure.

Poor thing, best to you!!

K

I know different doctors disagree on this. My doc was not high on dietary restrictions and didn’t really recommend them to me. He wanted to go straight to medications. I know other doctors are high on them. I think I read that only 1 in 4 migrainers trigger off of diet, but for those that do, dietary changes are probably quite effective.

Thank you Kathleen and Jamie…I keep hoping I will get better on diet, lifestyle and supplements. I’ll have a good day, and think I’m better, but then it’s followed by worse days. I am still staring at the bottle of lamictal. My husband really wants me to start it. I will tomorrow (or then next day:)

Hi:)

I just wanted to update that I did start the Lamictal October 1st, and so far so good. I have noticed some drowsiness, but only a couple hours a day the first few days (I took 25 mg in the morning), and now week two I am on 25 mg twice a day and have noticed morning drowsiness for an hour or so that passes. Otherwise no side effects yet. I doubt it is working yet, but I did have a pretty mild symptoms the past week.

I went to USF for an appointment the other day, and the neurologist basically just said “keep doing what your neurologist is doing”. She seemed more annoyed/acting like I was going behind the other neurologist’s back or something (even though I explained that I was recommended by the first neuro to go to USF). I was hoping for something like “I have seen 5 cases of this this year and they were on lamictal and did great” or some sort of personal experience.

I was at least glad she agreed it was “probably” MAV, but couldn’t say 100% (no other differentials, though). However, she offered no other information, no support, nothing. Kind of a waste of time to go, but at least I know have 2 doctors that know what it is.

FIngers crossed lamictal gets me better!

I am so happy you started the med and hope it brings you relief soon! This started after the birth of my 3rd child for me, I will gladly medicate if it means being a better mom again :slight_smile:

Update…
I’m still on the lamictal, but have had to really slowly go up on my dose, and twice I had to cut back on my dose due to possible adverse effects (both times, in hindsight, weren’t med related).

I have definitely shown improvements over the past 2 months: more good hours in the day and the episodes weren’t lasting as long. I still had worsening of symptoms around hormone fluctuations days. I had reached 100 mg 3 1/2 weeks ago, and was supposed to stay on that dose for 1-2 months and see how I was doing.

2 weeks ago I had to cut my dose in 1/2 due to a suspicious rash (which I now think was just contact dermatitis from a body wash). Two days after going down in dose from 100mg a day to 50 mg a day, I got MUCH better. I had SIX glorious days of almost no symptoms. I still would get mild head tingles spread across my head, but nothing else. I thought I had finally broken the cycle! It was amazing how good and clear and balanced and euphoric I felt. I could handle crowds and noise and walking, talking, turning my head…anything was ok!

After 6 days it came back pissed off. It was within the usual PMS time that I always have my worse symptoms, so I hoped it would just be a few days of bad, and then back to a good stretch, but 8 days straight have been awful…the worst that I have been in a month, with no breaks, no clear headed moments, just fluctuations between mild and bad.

I at first wondered if the meds had been causing side effects and reducing the dose helped. The 1/2 life is only 25 hours for lamictal, so the higher dose was technically out of my body within a few days, right about the time I got better. Now I wonder if the higher dose was helping, and it just took a week to wear off. Or maybe the meds have nothing to do with it and MAV has a mind of it’s own.

Uggh…and I have been doing the Buchholz diet and thought I was doing it all right the past 3 1/2 months and just realized my flour and breads have malted barley or maltodextrin and feel so frustrated with all this.

So. I am starting to slowly up my lamictal again today by 25 mg a week (gotta run it by my neurologist). I am back to rechecking labels again and trying not to get too frustrated.

This was my first borderline depressed week. I have been pretty upbeat, but after experiencing that wonderful 6 days of good, only to fall back into it all even worse, I was starting to get really down.

Thanks for listening, and thank you bbrees…I hadn’t seen your post before! I have been MIA on these boards the past couple months while I tried to just focus on anything but MAV, but stupid thing won’t go away.

Luna,
Reading your last post almostmade me cry! As I am going through the exact same thing, only my drug is topamax. I mean the exact same story. I had about six great days…was going up on the med slowly. My symptoms were nearly vanishing…I was at 80%. Then four days ago, after I got my period, Bam…it all came back. I didnt know if it was the med side effect? or MAV? Its so confusing. Im so sorry, as I know what u r going through. This sucks. :frowning:
Lisa

Oh Lisa, I’m so sorry you had such a bad patch, too.

I ended up with 12 days straight of awful with no break, and now I have had an up and down week with several pretty good days or 1/2 days. It’s nice to get at least a few hours a day with it mild or mostly gone. I’m almost back to 50 mg twice a day on lamictal again, and hoping the rash doesn’t come back. We’ll see what happens when my hormones get crazy again next week!

Thanks for your response…so comforting, but sad that you are going through the same thing.

Me again:)

I’ll keep updating my lamictal story, b/c it doesn’t seem like many on here have tried it.

I have been back up to 50 mg lamictal twice a day for 3 1/2 weeks. So far so good. No rash. No side effects that I’m aware of. I am better overall than I was a month ago: still daily symptoms, but they in general don’t last as long and aren’t as severe most of the time. I still have days that are worse than expected, but those aren’t as often (and definitely can be tied to my hormones).

If I don’t continue to improve after a few weeks, I’m supposed to go up on dose again, but am holding steady for now.

I have also been able to tolerate exercise for the first time since this started last summer.

Is the lamictal helping? I think so. 7 weeks ago I had to cut the dose in 1/2. Six days later I had 12 days straight of unrelenting symptoms…the worst that I’d had in a couple months. Titrating back up seemed to get me back on track.

Of course I am a skeptic and a scientist so also wonder if any of it is helping at all. Is this just the migraine thing doing what it wants? Is the diet working? The supplements? All of the above? Just a tincture of time? Was the worsening of symptoms after cutting the dose in 1/2 just withdrawl symptoms from going down on lamictal? I don’t think so, but who knows.

I have read all I can find about lamictal, and the studies do show it helps with migraine aura (not migraine headaches):
jnnp.bmj.com/content/76/12/1730.full

I was a little frustrated with the 2012 “Evidence-based-guideline” report for migraine prevention, b/c it listed lamictal as ineffective for migraine prevention. The reason cited was because it was ineffective at 50mg/day in a recent study. 50 mg/day is not considered therapeutic dose! Haha…I’m a bit protective of my lamictal.

So…I’ll update again in a month or so, but I am sticking with the lamictal (and the buchholz diet, and the Mg, Riboflavin, Co Q 10, and feverfew).

Luna

Hi there! I’ve been on Lamictal for a little over 2 weeks now. Still at 25 mg in the morning only. Curious how you’re doing and if the Lamictal helped? Thanks for any update!! :slight_smile:

Hi Margaret:)

I am still on 100 mg Lamictal twice a day. I am good.

I still have daily symptoms, but they fluctuate with my hormone cycle in severity. I’ve gotten good at managing triggers (for me: certain noises, especially those behind me, florescent or bright sudden lights, and certain foods).

I am a bit more symptomatic the past few weeks b/c I have been overdoing it and wearing myself down.

I found I could be outside with hardly any symptoms. My husband and I built up a 2 acre property behind our children’s elementary school into an environmental study area for the kids. I teach (volunteer) classes there daily and maintain the area’s chicken coop, compost program, butterfly garden, vegetable garden, and several outdoor classroom areas. A couple years ago I would never imagine doing any of it…and teaching to a bunch of loud kindergarteners would never have been possible:) I can no longer work as a veterinarian (indoor lights/noises/stress) but this is fulfilling.

I do think lamictal is a big part of it. I have no side effects from it. I steadily improved over the first 6 months on it. It was slow (mostly b/c I was a bit terrified of “the rash”, lol), but steady. I consider it a big part of managing this VM stuff.

I still have trouble in many places (grocery stores and church are the worst), but if it is a place I can manage the triggers with sunglasses, a hat, or finding a corner booth without noise behind me, I do really well.

Good luck with lamictal. I definitely think it’s worth trying for VM.

Jen