Hi there
Has anyone apart from Rich had a psotive response from Topamax? I am at 3 and half weeks and have felt no change.
Just seems like nobody ever seems to have any benefit from this drug …
I’m getting quite worried I’m plowing through all the MAV drugs with no response at all…what will happen when there are none left to take? … only Pizotifen worked. Blah.
Luke
I don’t have any personal experience with Topamax, but recall Rich saying that it took 4 months for him to get better. I wish you all the best. what dose are you on?
Luke, I have been on it for 1 month now and nothing but misery. I went from 15 mg and now up to 45 mg. I likely will pull the plug and taper back down this week. I have been much more anxious and dizzy and my blood sugars have been all over the map, hitting lows essentially after every meal (I have reactive hypoglycemia but never this bad). I also have had two migraines this month - other than these two, I have had only one since my MAV crash 14 months ago. I know Rich had success and I really hoped that it may be the one or at least be tolerable and provide some relief but I honestly don’t think it is the right med for me. Bonnie is trying it now too and I think she has made her way up to 90 mg. Good luck and I feel your frustration! Ben
Hi Luke,
My plan was to quit Topamax-- I posted about quitting Topa due to increased heart rate. Long story short I’m still taking it (we figured out my increased heart rate was because I wasn’t eating enough and my body was rebelling. So I am on week 5 1/2 of Topamax at 50 mg. I also am at 50 mg of amitriptyline. I really don’t think it is making any sort of difference though. Here is my problem…
The literature recommends being on Topa. for 3 months to see if it is going to work for you. Dr. Hain only trials it for 4-6 weeks. I’m confused by this. I’m hesitant to give it up and move on to the next drug if it has not had ample time to work yet. We won’t make ay decisions in my case until Sept. 16th at my next appointment but still.
What to do, what to do!
Sarah
It all sounds like a pretty miserable state of affairs and I feel for you all.
I’m not really having much trouble ith SEs apart from tingling hands and feeling a little dopey and tired. I’ve been feeling pretty dizzy this past month, but can’t tell whether that is Topa playing up or my travelling regime.
So far Rich is the only person I know that this drug has helped. Hain also wanted me to stick it out for a month. I think I will stick it out for 2 months and if I see no improvement after that will throw it in. For me, I think, based on Pizotifen I know if it will benefit me by 2 months or not. I mean you have to see SOME slight improvement…I’m not asking for a cure here.
Next stop is Effexor for me again, which I doubt will do nothing. Then I have run out of drug options really, and will have to wait to see if it magically disappears…great.
what meds have you tried thus far?
I am so sorry to hear that people aren’t doing well on Topamax. It must be so difficult to know when to quit it. I sure do wonder whether Rich felt any positive results before 4 months. Was it a gradual change or boom - he was great at 4 mos. maybe he will check the boards soon.
I am at 100 mg of Topamax now. The SE are not bad except occasional word finding episodes. I try to “hide” those and frantically dearch for other words to explain my thoughts. I am also on 75 Effexor & Propanolol. I still have 2 migraines a day, although yesterday for the first time in a long time I only had had 6 hour migraine. I am not walking. But somehow I feel like I am getting better. I am not ataxic and occasionally I can transfer from the wheelchair into the car by myself. Also, there have been several times when I couls sit at the table for dinner without becoming sick-that is a HUGE deal. So it’s obviously small gains, but I do feel like I am making progress. I have been at 100 mg of Topo for about 6 weeks.
Is that a kinda success story??? I see Dr Hain Sept 11. He wants me to see another Headache Doc because he has gone through his whole protocol with me. Dr Hain assured me he is not giving up on me and he would be my main doc. I found one of the HA docs he recommneded pretty close to me, but he is not in my insurance network. It is VERY expensive to be sick- even with insurance. 
Claudia
— Begin quote from “caglenn”
He wants me to see another Headache Doc because he has gone through his whole protocol with me. Dr Hain assured me he is not giving up on me and he would be my main doc. I found one of the HA docs he recommneded pretty close to me, but he is not in my insurance network. It is VERY expensive to be sick- even with insurance.
Claudia
— End quote
Do you mind if I ask who Dr. Hain wants you to see?
Sarah
He gave me a list of names off the top of his head: Dr. Merle Diamond from Diamond Headache Clinic, The Michigan Headache Clinic, Dr Larry Robbins and a few others. I could look at my notes if you like. He types our comversations since I am deaf and I keep a copy. I never met Dr Diamond. That was his first choice and he wrote a personal note to her while I was waiting, but I did not get a good feeling about the clinic. I felt like money was more important than healing. That may not have been the case if I had stepped into the clinic but that was the first, second & third impressions I got from their staff. I guess I have been spoiled by the caring attitude of Dr Hain. I am in the process of making an appt with Dr Robbins. Dr Robbins was also recommended by my sister’s friend.
Claudia
Claudia,
I wish you a lot of luck. Please let us know what happens. I had heard that there is a migraine clinic in Michigan - seems like the process lasts a few days to be evaluated, but I may be wrong. What did Dr. Hain believe they could offer that he could not?
Dr Hain felt that a HA clinic could just offer a different perspective. He and I actually discussed this twice. At first he said the HA clinics tend to do lots of tests, try lots of drugs but the patients end up back at his office in the same condition in 6 months. Then when I saw him again a month later and I was still having so many headaches (I was having a bad day the 2nd time we discussed this), he felt like I could use some new ideas.
It’s the same reason he sent me to Mayo last year when I was having tremors. But before I went he tweaked my meds and by the time I got to Mayo the tremors were already decreasing in intensity & frequency, Everyone at Mayo said they agreeed with Dr Hain. Perhaps it will be the same with the Migraine Doc. :? I am starting to feel just a bit better now. I feel good that Dr Hain & I have very respectful discussions. He never talks down to me and always explains his thought process.
Claudia
I’m glad to hear that you and Dr. Hain have a good relationship. I wish you all the best if you go to a headache clinic. I’m sure it cannot hurt. btw - did Mayo know about MAV?
Well I wish I had an absolute answer for you on this one, but all I can tell you is how I have been feeling on it. In other words, I am still trying to figure out if it is truly helping. You see, the problem is that I don’t know if my headaches actually stopped prior to taking the Topamax or if the med is keeping them from happening. My migraines had only just morphed into actual headaches prior to taking the Topamax - my “migraines” according to my neurologist, have been going on for a year, but have been in many different forms, and the only constant have been the visuals. For a month prior to seeing this neurologist (I have another neurologist who works with me for the balance), I suddenly started getting true migraines and what I called tension headaches in the back of my skull. She considered those migraines too. By the time I saw her and started Topamax, these headaches had basically ceased, so I don’t know if that was a fluke or if they just stopped and have not started again since I have been on Topamax. I CAN tell you that I haven’t had any while being on Topamax.
I am currently on 100 mg of Topamax, titrating up 15mg every week, except for one week where I stayed at 60 mg. I am now on my 10th week total on Topamax. I tolerated/tolerate the side effects very well (after the first two weeks that is!) I currently just have some tingling, some cognitive word-finding issues, and possibly a minor issue with my eye, but that I am not sure about. It did not affect my digestion but I already take benefiber on a daily basis. The one thing that bothers me is I have NOT seen any improvement with my vision (including the typical sparkles or aura seen prior to a migraine), which should have been the gauge to see if this med is working for me. So I don’t know what to do at this point. Eventually my doc and I will have to determine if I should stay on this med or not. For now, I do. I also know that it does take months for it to truly find out if it will work for you, so I don’t know why Hain or whomever said it only takes weeks.
Oh and btw, the first week or so, you will feel like &%$# on this med as your body adjusts to it, including possibly dizzy, so don’t worry. After that you should not. I did not feel dizzy on this med at all. I am, however, taking other medications for that.
Best, Bonnie
Bonnie,
What other meds are you taking for the dizziness? Isn’t the dizziness all apart of the migraine that Topamax would be treating?
Lisa
Topamax on its own is not enough for balance problems; it helps more with migraine issues. I am taking Klonopin and Tofranil for the balance issues.
— Begin quote from “MAVLisa”
btw - did Mayo know about MAV?
— End quote
Mayo never mentioned the diagnosis MAV. I had already been diagnosed with MAV by that time by Dr Hain, but that was 1) either not a big issue for the docs at Mayo or 2) they didn’t know anything about it. I didn’t know the doctors well enough to have long discussions with them. That’s not how Mayo works. You are whisked in & out of many different appointments. I also went through an entire battery of vestibular tests. I was really very sick the entire time I was there. I had a terrible fall (they called a code) which shook up my head even more It was not a good experience.
Claudia
thanks for the response. People are always telling me to go to MAYO, just because it is MAYO. However, I’m always explaining that I know what I have, and they may not even know about MAV. Claudia - I wish you all the best. Please keep us posted on how you’re doing.
I was going back in the archives and found this from Rich back in December…
Sarah
“The topamax worked gradually. I’ll lay it out for you. For example, at first, it would show up as me having a one day break from my 24/7 misery and then going back to the MAV crises again. I never had breaks so I thought this was definitely a good sign. I would just generally feel a little more “resiliant” on that one day. The next day though, I would be back to square one, and it would be a while before getting that day back. Next, it would manifest as an increased ability to do a little bit of work. Doesn’t matter what kind…changing a tire, changing a light bulb, and I wouldn’t suffer for it the next day. That was another big step. Before, anything I did one day would show up the next day in the form of being brutally beat up, and having even worse head symptoms. Once the topamax started kicking in, I was still suffering, but I seemed not to suffer for the things I pushed myself to do the day before. I would simply “reset” the next day. This was another indicator that something was happening for me, and I had to stick this out! The next step was that a few symptoms actually just stopped. The head vibrations were the first to go. Well, actually, not really. interestingly, the “rocking” sensations stopped early on in the topamax treatment which is one of the reasons I continued it. Nothing else budged but the rocking stopped maybe 2 weeks into treatment. But after the 4 month period, the head buzzing was the first to go. Then the brain fogginess. The de-realization. Before I knew it, I was feeling normal most days, with set-backs every 3rd to 4th day. As the weeks went on, I had more and more good days until I had my first “perfect” week with no major MAV incidents. The following week I had a set-back, but I didn’t think much of it. then it was 2 weeks of being normal. Then 3 weeks. At this point, having a set-back felt almost “abnormal” because I was used to being well. I would start to question if I was well or still sick. But after looking back on my progress, and seeing that every set-back ALWAYS resolved, I realized this was normal. Now I only have maybe 3-4 days of MAV per month, and they consist of light sensitivity for the most part. If i have a bad set-back, I might have some slight tunnel vision, or feel slightly funny in the head, but that is the extent of it and I am fine in a few days. And during the MAV flare-up, I am not stopped from doing anything I need to get done. It’s maybe a 30% flare-up because of the topamax. So, much like it works with headache, it has reduced my MAV by 90% and has made the flare-ups far less as well. I don’t think I have heard of too many people waking up instantly well, but the signs are there as you can see, and you just KNOW you are on your way! Sometimes I don’t have a lot of time to come here, but I try not to disappear, because when i was in pain, there was nobody here saying “I got well, and the medications work”. I found those people, but it was difficult. My good friend Joe on the forum here introduced me to one person who choses not to come to the forum. She got better on prozac and Toapmax. She got it bad as well which is why she needed two meds. But she’s fine now. Another woman named Stephanie used to post here. She got well on just Effexor but she hasn’t been back since. You really can’t blame them because they are out living life, but i wanted to make sure I at least made an effort to come back, and let people know that this IS manageable.”
I’ve had good results with topamax.
I first started taking it for symptoms of weekly migraines with aura and ongoing dizziness, nausea, brain fog, fatigue, neck pain and spasms in my neck face and shoulder between the migraine attacks.
At first I didn’t notice any results but that seemed to because of the prozac that I was also taking at the time. As soon as I discontinued the prozac the topamax starting working (like within a week or two). I didn’t notice the ‘word finding’ problem that other people mention. I’m not sure if this was a side effect of the topamax or just my own separate neuroses, but I did find that I had some bizarre out-of-character outbursts of rage/anxiety/panic/anger. Overall I thought it actually had a general mood stabilizing effect (other than these random episodes).
I stopped taking the topamax for about a year and just started taking it again. Have noticed some improvements within less than two weeks, but still dealing with some side effects. Hard to distinguish the symptoms from the side effects so doesn’t bother me too much.