I am worried about taking Topamax, migraine variant

[mkh9]

Hi, Well I got my migraine variant when I was 23 and it took them 8 years to diagnose me because I would not get a migraine headache or aura but would get throwing up and abdominal pain when I went to bed. I finally found a doctor that said I had a migriane variant and he did an EEG which was abnormal for a migraine/seizure pattern. They can't differentiate it because it was just high signal. I was put on Clonozepam and I am now 50  and haven't had the vomiting /abdominal pain since. In my 30's I got migriane headaches and aura, sometimes aura only or both or just migraine. So I was put on Imitrex. This has helped a lot with the pain.  This year I have started to get a lot of visuals, double vision, vertigo that comes on suddenly and I fall, part of my vision was black out for about 30 seconds and flying yellow lights in addition to the migraine headaches. So, now they have put me on Cyproheptadine, and that didn't cut out the vertigo, then amitriptilyne and so far I gained a couple of pounds and have some trouble with short term memory but the number of migraine headaches is the same but I don't know about the vertigo yet. So, they are going to try also Topamax but I am worried about the side effects. I don't want to ruin my health by getting kidney stones, or osteoporosis and the other side effects but I dont' want to get in a car accident or fall down either. Can someone tell me their experiences with Topamax. I particularly want to know side effect you have experienced and also if you had vertigo too.
thanks
mkh9

[mkh9]

Magnesium hasn't worked for me but I was only taking about 500mg. Are you taking more than that? My main problem is the vertigo and that makes me fall and if I were in the car I would get in an accident. That is why I'm trying the Topamax. It does make you tired and spacey but I haven't yet gone past 25mg. So we'll see. My Neurologist did say I could try magnesium with riboflavin so that might be a higher dose since she knew I had taken 500mg. Thanks for your imput. Imitrex and Ibupropin work fine for my migraine headaches but they used to be a lot worse.
take care,

mkh9

[Macca01]

hello all, am new here but thought i would let you know that I am 36 and have suffered from migraines for 16 years now. I have had great success with Maxalt wafers (Rizatriptan) which was prescribed to me just under 2 years ago, But I feel my body got used to in January this year and suddenly stopped working. Regular visits to the Chiro and massage therapist was working till I had to start working away from home and couldn't get there as often. i was prescribed Topamax in january with a dose of 100mg a day and stayed on them for a month but had to take myself off them as I felt they weren't working for me yet, and as I had a couple of near misses on the road from the side affects of dissiness and would rather migraines than knowing I killed someone from being spaced out. My breakthrough though is being recommended to take magnesium tablets as they are a muscle relaxant. I have been taking them since the end of January. Within the first week I stopped getting my migraines and havent had one since. I am not counting my chickens but prey this is my cure and will take 2 of these hot little pills a day while it works for me. Good luck to you all and would love to hear of anyone who might have a similar story with the Magnesium.

[mkh9]

Wow I'm so sorry for everything you have gone through. I had not heard of chiara syndrome before and it sounds very serious. I hope you are better now. Thanks for all the info. I guess I will start taking the first pill on Monday. I go up to 100mg total which I taper up over 4 weeks. I'lll remember to drink the 8 cups of water in addition to b sure. It sounds like they are getting a handle on your condition.
mkh9

[selmaS]

I did have vertigo, but that is not y I took TOPAMAX, it was to change the I think the word the Dr used was morphology  of the HA.....they wanted to change it...and they did....I actually started to get HA's in diff areas were I never had them b4...and my Dr said good that is what we want....??
No weight loss for me...and I was hoping I would....I was in the ER this summer with a new pain in my lower back and thought kidney stones...Nope not a one....I was told to drink plenty of water and my Dr tests my blood labs and looks for issues with my kidneys every 6 months ...plus I am on a low dose. Not sure if it was my surgery or the TOPAMAX but I sweat now and never did b4....not a lot...so, I did get use to making sure I did not sit in the sun long etc....so that is not an issue for me.
I make sure my 8 cups of water are just that water and my tea is xtra....I like to play it safe : )

I hope they test u soon....keep us posted : )

[selmaS]

Hi...3.5 yrs ago I had brain surgery for Chiari malformation...this is a condition where the skull is malformed and causes the cerebral tonsils  to herniate out and onto the brain stem and spinal cord, the tonsils can cause the spinal fluid to be obstructed causing many symptoms like HA(headaches) and drop attacks, similar to passing out, but not quite the same....balance issues, numbness in all limbs and even ur face and scalp....cognitive issues, vision issues....the list goes on...and then there are related conditions...

The side effects I had were I could barely hold my eyes open the first 2 weeks on the med...and I am only on 12.5 not a full 25....so they get cut in half....they were to help change the type HA's I got..which it did....I still get HA's with weather related issues...those with Chiari are walking barometers.... That was really the worst of it , I was just really out of it those first 2 weeks and since starting them they had me so out of it I did not see a benefit...as I said until I ran out...and when I finally got past the initial 2 weeks that feeling of being out of it went away...it was weird bcuz it was a chiari symptom that surgery helped get rid of and was back...but it soon went away...

[mkh9]

Hi Tessa430,
No problem I knew it was for me at least I didn't notice it until you said so, LOL. Thanks for all the info. My memory is bad now being on Amitriptilyne so I get what you mean. I guess I will try it and see how it goes.
thanks,
mkh9

[Tessa430]

I am sorry, it is not SelmaS. I am extremely new on here and I am sorry. This would be directed to mkh9.

[Tessa430]

I took it for a few reasons I guess. I suffer from migraines but was also diagnosed with a glioma. My neurologist ( who I think is an idiot), wanted me on it as a precautionary because I am at risk for seizures also. I started off at a lower dose but when my migraines were still lasting weeks he increased the dose to the maximum of 400 mg daily.
I don't know if you would consider this a memory impairment or something different but I had difficulty figuring out the words that I wanted to say. Holding a conversation was nearly impossible!!! I stumbled over my words to even construct a sentence and then would forget what the conversation was even about. I attributed it to my memory.
I don't think I had anyother side effects. But then again my memory was so bad I don't think it would have been possible for me to even realize it if there were. But if there were they were not bad enough for me to notice. The time I was on that medication was extremely difficult for me and those around me also.

[mkh9]

Thanks Tessa430,
The side effects do worry me. I am going to take 100 mg a day. Did you take Topamax for migraine, seizure or vertigo? What other side effects did you have?
thx,
mkh9

[Tessa430]

I was on topamax and amitriptilyne And I am back on the am amitriptilyne. I was on 200 mg 2x daily of topamax. Let me tell you. First if all that is an extremely high dose. But I could not remember a single thing. I would ask a question and no joke in less than 5 minutes be asking basically the same question with absolutely no recollection what so ever!!!  As a full time college student this created some what of a problem when attempting to study. So, be mindful of the side effects if you decide to take the topamax and the higher the dose the more severe the side effects. What happened to me may not happen to you. Good luck!

[mkh9]

Hi selmaS,
I'm sorry what is HA short for? Did you take the Topamax for vertigo? What is Chiari malformation?  Thanks for the info on short term side effects. Which side effects did you have? What dose were you on? So did you take Topamax for 3.5 years or how long? I read that pins and needles are common and that you don't sweat with this drug and can get over heated. I guess it sounds like if you don't get acidosis you don't get the kidney stones or Osteoporosis. Did you have a lot of weight loss too?
No one is monitoring my blood work but I see the PA in a month then the neurologist in 3 months. I think I should get my electrolytes done in about a month don't you? One last question so far, if I drink a two cups of tea does that count towards the 8 glasses of water per day?
Thanks a bunch,
mkh9