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Topamax - Taking the plunge and related info


#29

"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.


#30

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:
http://emedicine.medscape.com/article/884136-overview

— 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.


#31

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.)


#32

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.


#33

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.


#34

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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#35

“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


#36

— 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


#37

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.


#38

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


#39

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.


#40

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…


#41

Well, still on the Topamax. Docs weren’t particularly helpful in regards to figuring out if I have kidney stones (long story, but doc #1 said he was unfamiliar with Topamax, so I should see doc #2 who was the one who prescribed it. Contacted her with description of symptoms and she said didn’t think so, but I should see my PCP or go to a walk-in clinic, for SOMETHING sounds fishy. Went to the walk-in clinic as it was after 5 pm on a Friday, gave them symptoms, did a urine test and they saw no blood (which only means I didn’t pass one) and no bacteria, so they don’t think so either, but who knows?? They actually suggested possible ovarian cysts since I had some pain/tenderness in the lower ab area!!) So, still on the Topamax at 60 mg. Staying an extra week on it since have family in town/on vacation. Same side effects/nothing I can’t seem to handle. Now if I could only get rid of my major back pain and weird bloating, I would feel better!

So the Topamax continues…more later.


#42

I have kidney stones so I know that the only way to dx is through x-ray and/or ultrasound. I see a urologist (who specializes in stones) for my kidney stones. I never passed a stone and have no pain, but docs found out through an x-ray and ultrasound a few years ago. It is likely that your complaints, though, are unrelated to stones.


#43

Still on 60, going up to 75 mg this Saturday. My back/ab issues seem to be unrelated so continuing the Topamax, as I have been tolerating it ok (minor side effects, knock on wood). Still won’t know if it actually will work for me until I hit 100 mg and be on that dose for a while according to my doc.


#44

That is great news Bonnie. I will be starting back up this weekend. I may go a bit slower but I hope to get to a decent dose within a couple of weeks. Ben


#45

Thanks, Ben. Now if I can just solve the lower back and ab pains, I’d be feeling better!

Now remember, the first week or so on Topamax is the worst - you may feel like $%&#. GIve yourself some time. And go slowly if you need to. Good luck! ~Bonnie


#46

Hi Bonnie,
Sorry your back/ab issues have still been unresolved, but at least you feel reassured it is not the Topamax that is causing this. I am glad to hear you are tolerating the med. Good luck with you next dose increase. I look forward to hearing your progress.

Ben, I was wondering what made you decide to trial the Topamax again. I know you were not sure what your next move would be. Good luck to you as well, and start low and go slow as the others have suggested!

Lisa


#47

Ben - I wish you luck as well. I was also wondering what made you decide to continue with it. I hope it is the right med for you. Rich had such luck - it gives me so much hope for this med.


#48

Lisa x 2, thank you for the well wishes. I decided to give it another go because I started having second thoughts about whether I gave it a fair shot. Rich’s experience really started me thinking and I didn’t want to wonder. It is a tough call but I am committed to giving it another try. We will see what happens…thank you both again and I will keep you posted. Ben