Well friends, this weekend I begin taking Topamax (as does Benh here). My doctor recommends it for me since my migraines have now morphed into actual headaches. Prior I only had a headache occasionally, but now I have actual partial classic migraines, tension-type headaches, and regular ones, all which are part of the migraine family. We discussed my concerns over the side effects, especially the cognitive ones, and she said I really just need to tough it out and try the med, for it is one of the best for migraine/aura. (BTW, my doc is a neurologist who deals specifically with migraines at a major university). Also, I have had constant visual aura ever since the MAV began, and that too has gotten a bit worse. My balance was never as severe as some here and I have managed to keep that in check with other meds and my body adjusting, as overseen by my doc #1 who is a neurologist at the same university who deals with balance issues and is THE guy for MAV locally.
Obviously, one of the most important things is to tirate up slowly, so I will begin at 15 mg and then every week, go up another 15 mg until I hit 100mg by week 7. She did say I can slow down if I need to if things get bad.
So, I ask that you send ben and I all the luck/good thoughts and vibes/prayers/supportive messages that you can. I am a bit nervous about it, but I have to try. I know some here have used it to no success, or couldn’t stay on it, but there are others, like Rich, who have been successful. I am hoping for the best. If you have a success story, please do share!
I will try to post on this forum to give updates as I can. Just forgive my spelling or word-choice, as that may start to get a little funky! :mrgreen:
hello,
I haven’t posted here in a while, but I have recently started taking Topamax too. I am 22 and have been struggling with what my neuro thinks is MAV for about three years on and off. Ive tried Verapamil for about four months at 240 mgs with no help. I started nortriptyline at 10mg but my dr thinks topamax may be a better fit. Im only supposed to get up to 50 mgs and am up to 25 so far with no side effects (knock on wood)
by the way my main symptom is dizziness (like i just got off a merry go round) not a rapid spinning sensation luckily but just an overall dizzy sensation. I have no horrible migraine headaches.
As Bonnie indicated, I too am taking the plunge this weekend! After trying Effexor, Nortriptyline, and Verapamil, I have effectively come full circle in the sense that my origianl Nuero, (not a headache specialist) wanted me to try it last November but I wanted to try other things first and the headache DRs agreed at the time. The one positive is that I put a few lbs on with the Verapamil so maybe I have a slight cushion for weight loss, which I am very concerned about. We will see…I hope that Bonnie and I can post a success story in the coming months!
I’ve lost some weight already, but it’s not dramatic - mostly due to Pepsi tasting icky now - I’m happy about it because I really needed to lose the weight (plus hope to lose more). I’ve been wanting to cut back or get off of Pepsi anyway, so this has been a welcome side effect (one I’ve heard may wear off, so I’m not trying Pepsi on purpose because I don’t want to find out if it tastes good to me again!!).
I started on 25 mg in mid-April, and the Pepsi thing happened pretty early on; I’ve lost about 7 pounds in about 10 weeks. I do notice I have less appetite in general, but that’s only between meals; once I smell food or sit down to eat, my appetite is fine. My guess is that the weight loss thing with Topamax may have a lot to do with the empty calories in the soft drinks that just taste bad for many of us who take this medication! Hey, good riddance!
Remember that it’s very important to stay well hydrated on Topamax due to the risk of kidney stones - maintaining adequate fluid intake keeps that risk lower.
Well, I thought I would give a very short update. Stared with 15 mg on Saturday night and have been feeling very dizzy and my brain fogginess is worse. I also have been waking up with significant anxiety. I am dealing with some additional work stress at this time also so maybe that is aggrevating some of my symptoms…I will soldier on in the in the hope that this is the one that will eventually give me relief! Bonnie, I hope that you are doing well on it thus far.
Hi Ben! Thanks for the update. I too began with 15 mg on Saturday night. It intially made me feel dizzy, but I think that is because I took it too close to when I take my other med. Since then, I have felt really “medicated-tired”, slow, a little uncoordinated, a little fuzzy vision, and some digestive issues. So far though, cognitively ok. Unfortunately, I seemed to have messed up my jaw again (I have bad TMJ problems), so have some pains from that which I am dealing with which don’t help. So prayers for that would be welcome from all, for if I screwed that up again, my MAV will in turn get worse!
Let’s keep going on this Ben, and keep posting here as to support one another and let everyone know of our experiences. I do believe the first week or so the body basically freaks out and has to adjust, so we have to give it even more time. Hang in there! ~Bonnie
PS> Are you on anything for anxiety? I am - klonopin - so maybe that would help you too? If you are under stress at work though, that could be triggering it.
Good to hear from you Bonnie. I am taking one ativan in the am for the anxiety, just started that yesterday…not sure it is doing much to be honest but will continue with it for the week. Will send good thoughts your way on the TMJ, you have enough going on already and certainly dont need that added to the mix!
Do you use a splint for your TMJ? I have it really badly too. Am about to see a new dentist to see what improvements we can make.
Sometimes I get the osteopath to work on it which hurts like hell while they do it but provides good (if temporary) relief for a few weeks afterwards.
Best of luck on the Topamax.
Victoria
— End quote
Hi Victoria,
Yes, I use a specially made splint. I have been in TMJ therapy for a year and wore it 24/7 for a few months and then was able to just wear it when I sleep. I was doing fine with only occasional soreness from time to time until this weekend when I fell. I think when I did, the jolt of the fall, and the likely clenching of my teeth, caused my left jaw joint to move again, thus causing pain. I am seeing my jaw doc tomorrow. I already feel like &%$# on the Topamax as it is, so I hope I didn’t do a lot of damage again. (I think I screwed up my leg in the fall too - unless the topamax is causing that!) ARGH.
Seems we are having various side effects here, buddy. I wonder however, if the fact that you are taking the other med for anxiety is what is actually causing your nausea/stomach pains?
I felt really lousy by the end of the day yesterday. Extremely tired/medicated, some nausea, still some light visual weirdness, and so on. I am having pains from the TMJ and my leg too (I fell over the weekend and I think the jolt caused my jaw to slip again and I did something to the area behind my knee in the bending part), so that doesn’t help. I had taken my OTC sleep med Sunday into Monday which I wondered was causing me to feel even more out of it on Monday, so I did not take it last night. Had a heck of a time sleeping, but I should be able to tell by the end of the day if it indeed was the cause. My appetite has yet to change.
Oh and btw, I felt so cruddy yesterday that I spoke to a pharmacist who confirmed that it will just take 1-2 weeks for our bodies to simply get used to the new drug. The shock to the system until the body gets used to it is the worst. For me, since I am also taking an anti-depressant, I am likely to have even more wooziness/tired feelings for a while.
It is possible that the Ativan is causing some issues. I am not taking it today in any event - I only take one in the am when I am feeling particularly anxious. I too feel very dizzy/out of it, much more so than usual, since yesterday. I hope that we both get used to it quickly or at least have a better time of it.
Quick update…worst day yet for me. Very heavy-headed, more dizzy, weak, tired, fatigued, brain fogged, still have anxiety, now have headache too. On the positive, my stomach seems to have settled down a little but my appetite is not really there but I have been eating regularly even though not hungry. Hoping for a better tomorrow…
How are you feeling today? Did you bump up to 30 mg this weekend? I did.
Last week at the beginning was pretty bad. I felt lousy in many ways, but I did notice by end of the week things settling down. Now, at 30 mg, I am noticing the following: a woozy/off balance feeling, some trouble thinking, some visual clarity issues, coordination off, that “in a medicated bubble” feeling and a little tired. Placing an order for something over the phone was a bit more difficult than it should have been (especially them asking you many questions, including "would you also like this special offer… LOL! After the fact, I am wondering if I told the phone operator the correct shipping info!) :lol:
I figure every time we titrate up, we will feel more side effects or more enhanced ones for a few days (or so says the doc and pharmacist). Will let you know if it settles down in a few days. I DO know I don’t feel as bad as when I first began the med. My appetite hasn’t changed (and in fact, was quite hungry over the weekend) and no headache. However, using Aleve on and off for my jaw and leg/back pain due to my fall. (Doc actually gave me prescription strength of it if my headache returns, but I am not using it - just OTC dose occasionally for the above mentioned.)
Hi Bonnie, I have not gone up yet. I had a rough weekend. Feeling very dizzy, brain foggy, off balance, loss of appetite, headachey, fatigued/tired. I plan to increase it tomorrow night…right now I really want to stop but I know I will regret it if I don’t push a little harder. It sounds like you are struggling too. Keep up the good work and I will keep you up to date too. Ben
Just another update to let everyone know what’s happening on the Topamax in terms of side effects, etc. BTW, Ben, how are you doing?
Currently on 30 mg. Same minor side effects: a little woozy, coodination a little off, a bit tired, visually off somewhat, “medicated bubble” feeling. New side effect is some tingling and numbness in my feet and toes which goes away. Haven’t seen any difference in appetite and don’t expect to until I reach the highest dose (I don’t drink sodas, so I won’t lose weight from that either.) Have noticed that when I up the dose, for the first few days, I feel the side effects more. Doc and pharmacist said this is typical. I usually feel best by the end of the week right before I up the dose again.
Coincidentially, yesterday I had a migraine attack of a strange nature. Again it would seem that I am having partial migraines. Was in a store and noticed that I suddenly could not read something - had a dot in the visual area which is the first sign of a migraine coming on for me. I was already on Naproxen for my back pain, so I wasn’t sure what to do (I have prescription Naproxen from my doc to take when I get a migraine), so I just decided to ignore it and finish my shopping (didn’t take any more OTC med.) It was tough but I managed. The visual went away, I did not get a headache, but I DID get the physical sensations of post-migraine: nausea and that beat-up feeling. That was really strange, as I have never just only experienced those. So I don’t know what is going on with me - if the meds are working, if my migraines are just morphing again, or some combo of both.
Anyway, I move up to 45 mg of Topamax this weekend.
