I completely understand how you are feeling. Topamax was the first medication my neurologist gave me to control the migraine pain. But they gave me the same symptom as you. Also After they doubled my dose my hands started feeling numb and my legs started having a lot of cramps and pins & needle pain every morning.
Does it mess with your mood?
Its a sucky medicine in my experience but hopefully it gets better for you and helps you.
Hope you feel better. Here you can find so many great friends who really understand what you’re going thru and guide you to a better tomorrow.,
How long did you stay on the medicine for? Were the side effects worth the relief of pain? I was on a pretty low dose, so it didn't really mess with my mood... haven't noticed much right now, but I only recently upped my dosage. My neurologist doubled my prescription, which is why I am having such horrible reactions :/
I'm presently taking 300 mg each night, I do struggle with poor balance (kind of like a drunk guy when I walk) but I'm not sure if its from topomax or not.
I was on it for a month before they doubled it. Not too long after my personality just changed, I had really bad mood swings, my balance got out of control. For me the relief was not worth all the other symptoms.
After that I got on atenolol. Its ablood pressure medicine but its used to treat migraines as well. I was up to.100mg a day but out makes you really tired. They work good for a lot of people but I stopped taking them because i fainted at work and when I got to the hospital they told me the pill had lowered my heart rate really bad and I was really close to cardiac arrest.
I hope I’m not scaring you. There’s no such thing as the perfect chiari treatment. Everybody reacts different to medications. Hopefully your body gets used to the pill and the side effects stop because it really does prevent migraines.
I know that the best thing for me is to get the surgery, I just don't want to rush into that either. If I can get some relief from medicine, that would be preferable. You're not scaring me, I'm glad I know all of the facts!
I’ve been taking Topomax for a yr now. The first couple wks was a little off balance, then settled. I’ve had no issue until recently. Just decreased to 50 mg 2x’s per day, as it has caused 30 lbs weight loss in the course of that yr. I needed to bring it down when I noticed balance issues & a slight pressure on my chest. After adjustments, things are going better. I hope this helps!
My main symptom is dizziness, and I tried topamax 2x for 3 1/2 weeks each time. I took it at night, and it increased my dizziness a lot!! I hate this med. I have been dx with a vestibular migraine and have been on a chat line for that, and most people do not do well with this medication, and quite a few docs do not like it at all. When i got off of it both times, I got migraine headache and extra dizziness for 5 days, it was awful! Felt better off of it.
I was on it for about 2 months, 100 mg. NOT good. Dopey, dry mouth, no appetite (NICE! lol), and ...witchy. Seriously, if I wasn't ticked off, I didn't give a rats' patooty, totally apathetic. Sucked. On to the next.
I think everybody is different with topamax, and the dose makes a big difference too. Earlier in this thread, back in early May, I reported that I was on 100 mg and it had no effect on me. Fast forward 3 months and I am on 150 mg and I think I just figured out today that the increased dose is why I am absolutely miserable. Have my headaches decreased? Yes, finally, but with the other side effects I'm now having, I'd rather have them back, and as a Chiarian I never, EVER thought I would say that!
I have completely lost my ability to eat. Everything tastes horrible. I've lost nearly 20 pounds in 3 months time, have 24/7 nausea, can't sleep, hands and feet tingle constantly (they did this slightly before the topamax, but it's much worse now), and I developed severe depression, which I've never had in my life. So I asked my doctor to put me on an anti-depressant, and I'm not tolerating that either - my heart is now pounding, can't breathe, my skin is burning, my head is tingling. I can barely stand upright anymore from lack of food and sleep. Topamax has messed me up. I fired my neurologist last month, so I have no one to consult on this issue; I think I'm going to taper myself down on this medication until I can see my PCP (2 weeks from now). Crazy I know, but I feel like I'm going crazy!
Stinks to have to choose between headaches and side effects. I do think this medication can work, I have honestly felt a significant improvement in my headaches. As long as the side effects are kept to a minimum I would recommend it, but if they can't be managed, no way...
My daughter started on 50 mg of Topamax and it stopped her bad headaches. Side effects were tingling and slight metabolic acidosis treated with Cytra. After a month they decreased her to 25 mg and her headaches came back but much milder. She’s back up to 50 mg too soon to tell how it will affect her. Evidentally this is a potent medication and even 25 mg more makes a big difference in effectiveness and side effects. Everyone reacts differently and for some people Topamax is a lifesaver and for other people it is intolerable. It’s worth a try to see how it affects you.
I am so sorry it made you that much worse! We all know how awful Chiari symptoms are... the last thing anyone needs is unnecessary complications when you're trying to relieve the most apparent side effect. I know what you mean with the nausea and decrease in appetite. My doctor told me I might lose a couple of pounds on this medicine, and now I know why; I used to pride myself in eating 3 meals a day with healthy snacks in between, and now there are only a few select foods that don't make me want to spew. Most of all, I've noticed that this medication intensifies the side effects I already had before I started taking it. The scariest aspect of Topamax for me was the hallucinations, "dopiness" and anxiety when I first increased my dosage the other night... but it's calmed down a bit.
