Specifics of Topamax (topiramate) Side Effects?

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elektrikhd
Regular Member


Date Joined Jul 2014
Total Posts : 42
   Posted 7/25/2014 11:10 PM (GMT -6)   
I've been on Topamax for 3 months, 25 mg 2x/day to prevent my migraines. They had become weekly or more, sometimes wouldn't respond to sumatriptan, even a butabitol-caffeine-codeine-acetaminophen capsule sometimes did very little. My GP tried me on propranolol, but even at a high dose, it didn't help prevent them much, and it seemed to be making me gain weight (overweight to start with) and was making me lethargic and mentally sluggish. I went to a neurologist, he switched me to Topamax, and that has reduced the frequency and some of the intensity, although I've still had a few that did not respond well to the other meds (prednisone wound up helping).

I had tingling in my feet that came and went over a couple of weeks when I first started, and seemed to go away. Occasionally hands or face. Later, I had other tingling problems, but I think that can be attributed to an advanced infection of Lyme disease. With antibiotic treatment, those things cleared up...for a while.

I followed up with my neuro a few days ago, and since I've still had some bad migraines, we decided to try increasing my Topamax to 50mg 2x/day. I'm getting tingling in my feet, hands, and face, intermittently, stronger than before. But, I've also been experiencing a relapse of Lyme symptoms. Can anybody shed some specifics that might help me make a better guess as to which is the cause?

Also, I've had some speech issues: forgetting words, mixing up the beginnings of two words in a sentence, sometimes slurring a couple of words together, a couple of other things where words are said wrong, and the more troubling but less frequent experience of having difficulty in phrasing/sequencing things, having trouble getting my thoughts out. I had these problems at the peak of my Lyme symptoms before, about a month after I'd started the Topamax, and they were some of the first symptoms to clear up after I started antibiotics. I've read that Topamax can cause speech issues, but I've found nothing about what those issues are. Does anybody know exactly what? Again, I'm trying to figure out what's more of the culprit here.

And yes, I'm following up with a doctor about the Lyme symptoms on Monday, and I will be in touch with my neuro if stuff persists, too. :)

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7326
   Posted 7/26/2014 7:43 AM (GMT -6)   
Welcome to the forum.

As a preventive med topamax is a great med. I take 60mg 2x a day along with 2 other meds. Sometimes you need a cocktail to prevent the pain.

The symptoms are typical of topamax, however Lyme also.

Mindfulness as a coping skill or FOCUSING as a skill will help control these symptoms. Mindful.org is a good place to start.

If you are not happy with your Neuro, I would suggest finding one at a major hospital that specializes in migrianes.

Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

elektrikhd
Regular Member


Date Joined Jul 2014
Total Posts : 42
   Posted 7/26/2014 5:39 PM (GMT -6)   
Thanks :) I've come across a lot of people complaining about topamax, but even with the incomplete migraine prevention, I've been happy with the difference it made, and it seemed like the the side effects went away quickly.

Although it's only been a few days since the dose increase, my head feels different in a better but hard to describe way, almost like I've had a headache too subtle to register for months, but now that it's gone, I can tell there's a difference.

I'm pretty happy with my neuro so far...he seems to pick up on details pretty well: he's the one who caught on to the Lyme symptoms and ordered the blood test, for example.

I wasn't sure if there was any specific difference between how the similar topamax side effects and the Lyme symptoms manifest. Maybe there isn't, and in that case, oh well. I still think the Lyme needs to be addressed, and a little tingling is better than migraine pain.

Thanks again.
Depression (2000), Crohn's Disease(2012), Migraines (2012), Lyme Disease (3?/2014-current), Glaucoma (7/2014, left eye only)
...and I was born in 1984 :P

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7326
   Posted 7/27/2014 9:41 AM (GMT -6)   
Yes, the lyme does need to be addressed not doubt! It will only manifest later.

So glad the med it working for you.
Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

elektrikhd
Regular Member


Date Joined Jul 2014
Total Posts : 42
   Posted 7/28/2014 9:01 PM (GMT -6)   
I was seen about the Lyme today, so I'm starting a new course of antibiotics. The tingling has decreased in the last day, and my hunch is that it was due to the increased topamax dose, and I've adjusted to it now. I'm feeling hopeful about the migraines.
Depression (2000), Crohn's Disease(2012), Migraines (2012), Lyme Disease (3?/2014-current), Glaucoma (7/2014, left eye only)
...and I was born in 1984 :P

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7326
   Posted 7/29/2014 9:47 AM (GMT -6)   
Very Good, stay on the med, it should give you relief.

Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

jules80
New Member


Date Joined Oct 2014
Total Posts : 2
   Posted 10/17/2014 3:30 AM (GMT 0)   
i used to get lots of tingling in my hands fingers feet ,and if it was cold for what ever reason my nose. That was at 100 mg.. topirimate worked well for a time on me. Not anymore though..

There are a few other fun side effects you may encounter as you get to 100+ mg ; carbonated drinks taste flat , the tingles, little floaty dots in your vision. I tripped right out at night when i was tired especially. Lots of tracers kinda like on mushrooms or acid.. pretty intense. My cognitive function was dampened which really sucked..(i"m quite smart just a little ditzy at times haahaa!!) I would really grope and fumble around with words. Drop off mid sentence and forget what i was saying. like i said in another thread I sounded like a drunken child. slurring was happening on occasion. all the side effects you said associated with lymes i guess.Weight loss (whoooo hooo) BUT it was all worth it once i adjusted , to be greatly migraine reduced. Still had them just not as often or as intense.

Another But.. after 10 months the frequency & intensity of my migraines were starting, I was getting moody and depressed, not myself, So i am in the last stages of weening off the meds. My dr wanted me to increase my meds but I'm really not down for that . 7 more days :) ...you've no doubt been experiencing some of these side effects by now .. i really hope it works for you. this was my experience in a nutshell. Topiramate works for some not for others and i hope you get some relief !!

Post Edited (jules80) : 10/17/2014 1:29:04 AM (GMT-6)


deltaforce
Veteran Member


Date Joined Jun 2010
Total Posts : 2250
   Posted 10/19/2014 3:37 PM (GMT -6)   
I didn't read all replies, but I ended up with kidney stone. Topamax wasn't working for me as it is, but with kidney stone in just 6 months, I stopped it cold turkey and went with Verapamil. It is working good but didn't get rid of migraines completely.
Dx 03/2007, left sided UC. Currently in flare
Sulfasalazine 1.5gm 4X a day, Vit. B12, 1mg, Multivitamin, 1 tablet, Fish oil 2400mg , Butyrate 2-3 caps, Vit D 5000 IU, Benebiotics 2caps, Canasa, rectal steroids

Verapamil 320mg for migraine,
Nabumetone 750mg as an abortive, so far so good with GI side effects.

I'm A Keeper
New Member


Date Joined Dec 2014
Total Posts : 2
   Posted 12/14/2014 9:31 PM (GMT -6)   
I had several terrible side affects from Topamax . First, My thought process and speech were greatly affected and I often had to stop talking in the middle of a sentence because the words I needed to use were gone, I couldn't remember them. Some times I just even forgot what I was talking about or dropped thoughts in the middle of any conversation at home or work. Some of it I still don't recall. Even though this was happening, I stayed on it longer because my severe migraine headaches decreased in the amount I had. Then I got kidney stones from the Topamax. Horrible PAIN My memory issues and kidney stones are side affects of the drug. I tried many drugs and drug combinations for two years prior to the Topamax, some with no headache help and some gave me heart pallpatations and more. I am finally on Cymbalta 60mg (first 30mg, then 50, now 60 mg.) You must take with some food or risk getting a hurting stomach, You also have to take it first thing in the morning s that you are able to sleep at night. It helps with losing weight too. My migraines are at about 4-5 per month instead of a migraine daily to a migraine 17-20 days a month.
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