Topamax - Taking the plunge and related info

Hi Bonnie, I regret to say that I pulled the plug on Tuesday…I was having a difficult time with the increased dizziness, brain fogginess and flu-like symptoms. I also lost 4 lbs, which is a big concern for me and was much more anxious than usual. The Dr suggested that I stay off for a week and then possibly start back up more slowly, opening up the 15 mg capsules. I am a bit down about it but the flu like symptoms were gone by today. While I can’t be 100% certain Topamax was the cause, the timing seems to be consistent. I haven’t decided whether I will try it again next week…very frustrating! I hope that you can keep up the great work on it. Ben

Hi Ben,
Sorry to hear you had to pull the plug on Topamax. We were all pulling for you. I think you mentioned you tried Effexor in the past, but would your doc consider zoloft (sertraline)? Did your doc suggest anything else besides going back on the Topamax? I really hope you feel better soon! Keep us posted.
Lisa

Hi Lisa, my Dr just said go off and call him in 7-10 days…and we would decide what to do. I may suggest Zoloft - that is one that I have had an eye on for a while. I also was thinking about Propanonol, but am a bit concerned with the low bp issues, although I did ok on Verapamil in that regard. I did try Effexor but it wasnt for me. I am definitely feeling better since stopping the Topamax. I will keep you posted. The saga continues…! Ben

I’m sorry I didn’t get here sooner to maybe help talk you out of NOT stopping the topamax, but I guess it’s too late. Topamax is a POWERFUL medication and it can often cause some pretty intense symptoms for up to the first few months,…yes, MONTHS, but more often than not, most, if not all of those symptoms go away with use, and then the results kick in. Dr. Hain explained to me that it could take up to 4 months for Topamax to rev into full effect and that is exactly what happened to me. I was hoping it would work sooner, but it took the entire months, and during that time, I suffered the entire way. I was only able to tolerate 62.5mg and at that dosage, I simply couldn’t breathe. It induced asthma. I tried to tough it out for a month but the breathing issue did not go away. Two doctors told me to get off the medication. I refused because I knew that if I didn’t give it the full 4 months, I wouldn’t know if it worked or not. So, instead, I lowered it back to a dosage where I could breathe. 50mg did the trick. But during the entire titration I was sleeping for 14 hours a day and I was STILL exhausted, I was even dizzier than normal, the brain fog was off the map, I was sick to my stomach, I would have diarhea at every titration, it was horrible. But I stuck it out because I knew if I didn’t, I would have an incomplete trial and would eventually come back to it at a later date.

I think my titration also helped a little. I started at only 6.25mg and raised it up 1/4 of a tablet every 7-10 days until I reached 100mg. But I never got there. I got to 62.5mg and thought I was going to die from the breathing so I lowered it to 50mg. 2 month later (for a total of 4 months) I was free of 90% of my problems. I now live a fairly normal life compared to before and I am not very limited at all. I don’t go on cruises or air planes, mostly out of fear, but other than that, I do pretty much anything else I want. I run a haunted attraction and I sometimes do heaby labor for 8 hours a day and it doesn’t nothing to me :wink: Before, my head would be floating after 20 minutes and I would have to sleep the rest of the day. The regular’s here know that my case was VERY intractable and I was about 80-90% disabled from my MAV. I had DOZENS of symptoms that were 24/7. None of them were ocassional. I suffered to no avail. Now, I have only 1 symptom that is 24/7 and it is very minor, and one additional symptom that is ocassional when I get “set off” by a trigger. I’m pretty happy. Not bad for only 50mg of topamax. Think about it. I was practically disabled and it only took 50mg of topamax to straighten me out. Plus, out of all the symptoms topamax DID give me, memory problems, and tingling weren’t among them. I think the slow titration helped that. Anyway, I thought I would interject my story here. Topamax is one of those meds that if you don’t stick to it the entire 4 months, it is pointless to ever begin. It can be VERY tough but at the end of that 4 month period, the results are unbelievable. Sure, things could be different for you but Dr Hain DID say that it could take that full 4 months and that doesn’t just appply to me. Heck, my side-effects didn’t go away for almost that entire 4 months as well. Now, it’s like taking water. Whatever you decide to do, I wish you luck

Rich

Rich, I am very glad to read your post. Success stories always help. When I tried Topamax my tongue went numb and tingling within hours of taking a small, small dose. How were you able to stick it out? I may have to try again.

TY
Sally

This entire discussion is very interesting to me. I had to give up the high dosage of effexor (150 mg). I was really sick the entire time (almost 3 weeks) that i was at that dose. After a flurry of emails & phone calls with Drs Hain & Cherchi on Friday, it was decided that I would cut back on Effexor.I also tried the Intranasal form of DHE. The Effexor dose was too high for me to do the IV DHE.

I am titrating down to 37.5 mg of Effexor and will then be starting Topamax (probably Tuesday). I will do my best to stick it out but it sounds tough to stay with it and work at the same time.

On to plan B & Topamax!

Claudia

Rich, thank you for the well thought out email. That sounds like you had a tough time but were rewarded in the end. I am still on the fence about restarting slower…I am concerned with the impact it had and may have on my work performance. Thanks again Rich - it absolutely helps to hear the positive stories especially with respect to Topamax! Ben

Thanks for the added posts, everyone. Sorry to hear that you had to stop, Ben, but I think Rich’s post may provide some insight to Topamax’s long journey when it comes to its trial. Of course, everyone is different, but it would seem that it does require many weeks/months of trying it to see if it will work.

I am now up to 45 mg. I still have the same “minor” side effects as I noted in earlier posts here, with a little more tingling and numbness in my feet. I plan to keep going along and hopefully reach my goal of 100 mg after going up 15 mg each week, although I may stay at 60 mg for two weeks as I will be on vacation/having company and want to be more clear-headed that week. I go week by week and see how I feel and then figure out the next step. Interesting that you have lost your appetite Ben, as that usually doesn’t happen until you get up to higher doses unless you drink sodas (because sodas taste metallic on Topamax). Maybe it because of your nausea. Anyway, am just going with the flow with all this and hoping the side effects don’t get too bad and it doesn’t end up being for nothing (i.e. that the med actually ends up working for me.) The doc said I would likely know if it is going to work for me by noticing that my daily visuals get better/go away (as my other symptoms are less obvious/measurable.)

Best, Bonnie

"Dr. Hain explained to me that it could take up to 4 months for Topamax to rev into full effect and that is exactly what happened to me.

Topamax is one of those meds that if you don’t stick to it the entire 4 months, it is pointless to ever begin. It can be VERY tough but at the end of that 4 month period, the results are unbelievable. Sure, things could be different for you but Dr Hain DID say that it could take that full 4 months and that doesn’t just appply to me. Heck, my side-effects didn’t go away for almost that entire 4 months as well. Now, it’s like taking water. Whatever you decide to do, I wish you luck."

Hey Rich, just to clarify - are you saying that once you got up to 100 mg (or whatever your top/goal dose was), it took 4 MONTHS for you to feel the results or positive effects of Topamax?? My doctor has not told me this at all. She basically said that 100 mg is usually the goal dose for migraine issues and you have to titrate up slowly to it. Then you have to be on it for a while, which I took to mean a few weeks, before seeing any results. She did note that it is possible to see some results earlier at a lower dose (around 75 mg) in the areas of aura/visuals. So maybe Hain was including the time that you were titrating up in dosage? I’m less concerned about the side effects than I am about seeing results. Thanks, Bonnie

PS. And yes, I know everyone is different when it comes to meds, but I don’t recall reading any stories about anyone taking this long to feel the effects of this med working for them.

I have occasional severe vertigo. The first time (about 6 years ago) they thought it was a viral infection of the nerves, the second time (2 years ago) they thought it was Meniere’s disease. I had an ENG and hearing tests that were normal, so they had no diagnosis. Three weeks ago I had another vertigo attack. This one was preceded and followed by an intense headache, so they are thinking it might be MAV.

I’ve been prescribed Topamax and took my first does last night. He has me on a comparably fast titration, 25mg to start and 100mg by 4 weeks. I have not noticed any side effects yet, but I have not recovered from the vertigo attack yet. I was worried by the possible side effects and drug interactions of Topamax, so I’ve been reading about MAV on these boards and other sites. After reading this thread, I do not think I am going to take any more of it.

My Dr said Topamax was a first-line medication. My insurance company and some web sites disagree. From:

— Begin quote from ____

First-line prophylactic medications include calcium channel blockers (verapamil), tricyclic antidepressants (nortriptyline), and beta-blockers (propranolol). Second-line treatment includes topiramate, valproic acid, venlafaxine, and methysergide. Acetazolamide has also been reported as an effective treatment by several authors.

— End quote

I think I am going to ask about trying verapamil first.

danno - FYI

The article that you cite is co-authored by one of the docs I saw as I was starting on my journey through this thing - fortunately, I saw him early on in the process, so I didn’t have to wonder for too long what the heck was going on with me. But as a neurotologist, he told me that he does not treat what he called migraine associated dizziness (I liked that term better than m.a.v. since I’ve never had a spinning sensation, which the word “vertigo” always conjures up for me). So he said I should see a neurologist, and I asked him for names of docs that he liked - the one I went to prescribed Topamax.

So don’t the neurologists that he likes read his articles? Maybe they do read them … but maybe he doesn’t necessarily agree with his co-authors regarding which meds are first-line, and he has told them so. I wondered about that.

But then, I wasn’t really excited about verapamil either, since I have a home blood pressure machine and during some of my dizzy spells I’d actually gotten some pretty low readings: taking a medication like verapamil that lowers blood pressure might not be the best idea for someone like me! (Not to mention, I liked when the neurologist said Topamax has a possible weight loss side effect - I NEED that side effect, and it has been great so far! Weight coming off slowly, but still coming off, and that’s been wonderful.)

Keep in mind some things here - it depends on what you are treating. Are you treating MAV specifically, or migraines, or balance issues, or a combination? Yes, some meds may NOT be listed as “First line” but they ARE used and ARE helpful. Don’t just go by what is supposed to be THE first med to use. It isn’t as cut and dried as that so to speak. Also, don’t get scared off by side effects or others’ experiences. Everyone is different. You may see patterns of what people experience, but, everyone’s body chemistry is different. Work with your doctor, express your concerns, and decide what is best for you. Danno, the only thing that is a red flag regarding you is your diagnosis (I am not convinced that you have MAV from your description) and the how fast they want you to go up in dose on the Topamax. If you want to stay on it, I would suggest going slower. However, another med may be better for you. Oh and btw, they usually use a combination of meds if you have MAV, such as an antidepressant for the vertigo and another med for the migraine issues, thus why you are seeing those come up on the list. Good luck.

I agree with bcrelief about going up slower on the Topamax. My neurologist gave me a choice of going up 25 mg every week or every 2 weeks, and a doctor friend of mine who has prescribed Topamax (not for m.a.v. - it has other uses) urged me to wait 2 weeks between dosage increases. That’s what I did.

But bcrelief - are you sure there is “usually” a combination drug approach with mav? I’m only on Topamax myself. My understanding is that it treats migraine disease, which is the cause of my dizziness, so I didn’t think that a dual drug approach would be tried unless one drug didn’t do the job.

As someone else said, Topamax is a powerful medication. It is great if other meds don’t work or for extreme cases. I have a relatively mild case, and I haven’t tried any medications yet. I’d rather not start with a really powerful medication if something else will work.

After reading some of the success stories here, I think I might try “Heal Your Headache” before I resort to medications.

My Dr said I should not take Excedrin because of over medication headache. He failed to mention that caffeine could be a trigger for migraines. He did not discuss diet at all. He did not discuss triggers at all. He did not discuss other medications. Perhaps I need a different doctor.

Thanks for all the info. I’ll continue to follow the stories here, and add mine when I know something.

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“But bcrelief - are you sure there is “usually” a combination drug approach with mav? I’m only on Topamax myself. My understanding is that it treats migraine disease, which is the cause of my dizziness, so I didn’t think that a dual drug approach would be tried unless one drug didn’t do the job.”

HI MaryAlice - Regarding your question, yes, it is not uncommon to see two medications used for MAV. (Perhaps the word “usually” was a bit too strong, although I do know a number of people do need more than one med.) This is not to say, however, that you must be on two or more medications. Docs may start you on one and see if it works. If it does, fine. If not, they add another. I do know that a number of people find a need for a medication that helps their vertigo/balance (an antidepressant) and one for migraine. I am one of these people. Topamax can work for some, but I was told by my doctor (a neurologist at a top university who works specifically in area of migraines) that it is more for migraine issues, not balance. My other doctor (another neurologist at the same university who is THE MAV guy) has me on a different med for the balance issues which I started before the Topamax. This makes sense in the scheme of things. It’s hard to explain, because migraine may not be THE cause of your dizziness per say. Never the less, I would not worry about it. Try the Topamax and if it works in all ways for you, count your blessings!

Best, Bonnie

— Begin quote from “danno”

As someone else said, Topamax is a powerful medication. It is great if other meds don’t work or for extreme cases. I have a relatively mild case, and I haven’t tried any medications yet. I’d rather not start with a really powerful medication if something else will work.

After reading some of the success stories here, I think I might try “Heal Your Headache” before I resort to medications.

My Dr said I should not take Excedrin because of over medication headache. He failed to mention that caffeine could be a trigger for migraines. He did not discuss diet at all. He did not discuss triggers at all. He did not discuss other medications. Perhaps I need a different doctor.

Thanks for all the info. I’ll continue to follow the stories here, and add mine when I know something.

— End quote

Hi Danno,

I totally agree with you. If you don’t have a serious case, why start on such a strong medication? I definitely recommend reading the “Heal Your Headache” book, adjusting your diet, lifestyle (including sleep, exercise), and staying away from over the counter headache medications. The latter can cause rebound headaches. Your doctor sounds like he either is unaware of migraine triggers and issues or doesn’t particularly care to discuss them with you. Not a good sign. Continue to do your research and consider seeing another doctor for more suggestions. If you decide to start a new medication, go slowly.

Best, Bonnie

Latest update:

Am currently on 60 mg. No new major side effects (knock on wood) - just the same ones I have listed above. Every time I up the dose, for the first few days, I feel more out of it and woozy and the side effects more, but they then tend to dissapate. I am supposed to go up to 75 mg this weekend, but I think I am going to stay at 60 for an extra week because I am on vacation next week with family in town and want to feel ok, as I will be going out a lot more, etc.

So far, I haven’t seen any improvement on Topamax, but then again, I haven’t reached the goal dose of 100 mg. My visuals are really what are bothering me the most right now (and I think are getting worse) and I have only had one migraine attack, although the migraine headaches seemed to stop prior to me taking the Topamax so I don’t know if the med actually stopped them or are keeping them from happening. Supposedly once I hit 100 mg and am on it for a bit, the way to tell if the med it working is that the visuals will get better, so I am crossing my fingers. One day at at time.

Will continue to keep you posted.

PS> My other med, Tofranil, actually makes me feel lousy in other ways as I cannot go outside for very long or be in sunlight because it overheats me/causes me to burn and gives me headaches from that. So basically I am missing out on the summer which sucks.

Bonnie, it is great to hear that you are still going. I am still on the sidelines…not sure what my next move is - maybe try Topamax again, maybe Zoloft, or maybe try Klonopin. I wish you the best. Ben

Hey Ben,

Well, I may have spoken too soon. I’m not sure, but I might be developing kidney stones from the Topamax. See my thread about developing kidney stones from meds for my story. I’m bummed and not sure what to do.

Currently on 60 mg, still figuring out if it is causing kidney stones. Following up with docs today so hope to have a clearer picture soon as what to do next. More forthcoming…