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Posted By : Batman55 - 6/16/2011 3:11 AM
My neurologist wants me to take Topamax longterm to reverse my 24/7 "headache."  I have doubts that this will happen, let alone that it will provide any relief.  But I have often heard that chronic migraine conditions are often reversed in people who have taken Topamax long enough, and that they don't even need to take medication anymore.  So, what exactly has Topamax done to their brain, in order to produce a kind of longterm (if not permanent) change?
 
Apparently the simplified version of how Topamax works is it calms "overexcitable" nerve cells in the brain, thereby preventing migraines from starting.  Judging by the fact that it can reverse chronic migraine conditions, I wonder if longterm use of Topamax could "downgrade" the sensitivity of one's brain.   But wouldn't other things--besides susceptibility to headaches--also change?  Could a typically emotional/passionate person become more "indifferent", due to this longterm "blocking" of neuro-excitation?  We know two things that potentially could support this idea:
 
1) Topamax is also used for bipolar disorder, therefore it does produce a kind of mood-flattening, apathetic effect of its own--many people, myself included, have noticed this effect.  Most people think the apathy is a temporary side effect.  To the contrary, I think it might be tied-in with the "calming mechanism" central to the drug's main action
2) Topamax alters electrical activity in the brain, and it can change it longterm if used long enough (my neurologist even said so)
 
Certainly, I have no idea if there's anything to my theory.  I've only been on Topamax for 6 weeks.  Perhaps the best answers could be found from people who took Topamax for a few months or longer, and then quit.  Did you feel "different" for a while afterwards; if so, please explain...

Posted By : Susan R - 6/16/2011 11:44 AM
This is how my sons neurologist explained Topamax use. Think of a migraine as having bruised your brain. Everytime you get another headache or migraine, you have touched the bruise and make it worse. So your brain is bruised by all the headache. The topamax helps give the brain time to heal the bruise. When you are young or have only had mirgraine for a short period of time, the brain is able to heal itself. When you are older or have had migraine for years (I have for 30 years or so) the brain doesnt heal as quickly or as well. So, my 9 year old son was on Topamax for only 6 months and is now being taken off it. The neurologist said if he put me on Topamax it would be a long term thing.

I am not sure if that answers your overall question about feeling different after getting off the med, but maybe will help you look at the use of it differently!
Husband 39 at diagnosis 12/2010.
No symptoms, PSA 18 in 10/2010
one month antibiotic then PSA 12.6 in 11/2010
biopsy end of 11/2010 Gleason 6
Da Vinci prostatectomy 2/2/2011
1-2 pads per day up till around May 2011, then 0!!!
Taking 20 mg levitra daily June 2011.
1st post-op PSA less than .05
3 month post surgery = undetectable


staging: pT2aNo, Gleason6

Posted By : suarezld123 - 6/18/2011 11:20 AM
At first I felt anxious on the Topamax, but after a couple of weeks I felt really good. Probably better than I had in years which I thought was weird. I just figured maybe it was the fact that I didn't have a headache all the time, but maybe there is something to your theory. When I upped the dose, I again feel a little anxious, not as much as the first time. I am hoping after the second week I will just feel normal and good again like I did after the first two weeks. I definitely don't feel flat but I didn't feel bipolar to start with so maybe the effect is different. Whatever it is, I'll take feeling good and normal whatever is causing it.

Posted By : Batman55 - 6/18/2011 10:38 PM
Yes, as mentioned, it's an anticonvulsant--doubles as a mood stabilizer.  That can be perceived as calming or "less irritable", even if you're not bipolar--I would assume.  Probably you won't even notice an effect on mood anymore, after a while.  I definitely noticed unusual periods of "cool and calm", but it also came with a lot of apathy and other unpleasant effects for me.  Just saw the neurologist a day ago and due to the fact I've been on Topamax for a month and a half, up to 75mg, and no noticeable relief of headache, she told me I should wean off of it.

Posted By : suarezld123 - 6/19/2011 4:11 PM
Perhaps I was already apathetic and that is why I didn't notice it, lol. It seems to have cut down my migraines, but I would like to keep the dose as low as possible. The neurologist said the goal is to use the smallest effective dose and then eventually wean ff. am sorry that it hasn't helped you. I was really scared to try it because of the unpleasant side effects, but for the most part I think I have been lucky.

Posted By : Dog house - 6/19/2011 10:17 PM
I was on Topamax and I had gotten up to 100 mg and I was very happy with the headache releif. Then my family started telling me of times where I had been confused or stumbled over my words - more than usual. My Dr had warned me that this was a potential side effect and that I would need to go off of this med immediately if that happened. I was in denial and I told my family no, it's not that big of a deal just deal with it, it's just me. After a few days I realized they was right, but I still didn't want to go off of the med because it was working for my pain. My Dr had me taper off of the drug and then I started on others, I have not found another that works as well. Months later I have a new Nuerologist and she suggested I give Topamax a second try, but stay at a low dose. I'm only on 25 mg and I'm having times where I question is this the Topamax or is this just because I'm in pain so much of the time. However I am thinking of having my Dr take me off of this and try something else.

Posted By : Batman55 - 6/19/2011 10:48 PM
Dog house,
 
Are you saying you're getting noticeable confusion and stumbling over words from just 25mg of Topamax, on your second go'round with the drug?

Posted By : Dog house - 6/20/2011 7:47 PM
I'm not positive it's the Topamax that's causing it, I need to discuss things with my Dr. I'm on a lot of other meds and I also have a telangiectasias on the pontine and so one of those could be the cause. The stumbling on my words is very noticable and much like before, it's not just verbal it's the thinking thats hard. Confussion is not so much the issue now, but I'm not remembering things and I'm having a hard time doing my lesson plans for my special education kids that I teach. Before I when I was at 100 mg once I was at the grocry store with my daughter and at the checkout I couldn't remember my pin # for my debit card, lukily my daughter was with me because I didn't understand why there wasn't enough space for me to put in my phone #. I'm asking myself if its not confussion that I'm having a hard time with then what is it, well I'm having a hard time staying on task, and concentrating, and forgetfullness.

Posted By : Sherri0120 - 8/27/2011 6:56 PM
I think Topamax is one of those funny drugs that you either love it or hate it. I have a friend at work who absolutely loves it. It keeps her migraines under control.

As for me it made me nuttier than a fruitcake. My doctor said it is often referred to as dope-a-max. I could not spell any word with a double letter in it. When I asked my daughter how to spell doll she said "mom, please tell me you are not this dumb" I was.

I would also get an intense feeling that I had a blood pressure cuff on my leg super tight and it would last for 10 minutes then go away. It was strange. I couldn't function on it.

But like I said, others love it and it does wonders for them.

Posted By : 53 and tired of pain - 3/27/2015 10:40 AM
I have been on Topomax for approx. 5 years, started at 50mg for migraines. When I first started taking it I felt great and then it hit me wait a minute my neck and shoulders do not seem to be hurting any more. I laughed off the initial shock of loosing my words when in a conversation, I think those around me must have thought I was crazy. I now have severe arthritis and fibromyalgia (lucky me).

I am now taking 100mg of Topomax not sure how long I have been on that dose but probably a couple of years. I now have a new daily migraine that has been attacking the right side of my head and the only thing that seems to offer any real relief is ice packs.

I stopped taking Topomax 3 days ago simply because I know I am going to pay a huge price one day for all of this crap I digest on a daily basis and still feel like I was hit by a Mack truck. Okay back to the 3 day detox I am now feeling things I have not felt in a long time one of them being when the nubs on my legs rub on the sheets and how that feeling would drive me crazy. I am also feeling more Fibromyalgia pain although strangely enough the right side of my head is mild today however I am in bed due to other pain. Is there an answer, I am sick of being sick!!

Posted By : mblo - 4/1/2015 1:49 PM
I am finally done with this drug. I have had to wean myself off of it. I started it in December and headaches got worse. Doctor increased me up to 200mg twice a day. I could not stay focused at work. Couldn't remember a simple phone number I have had for years. Couldn't form correct sentences or find the right words. I felt like a bubbling idiot. Found out this is a side effect of the medication and immediately starting reducing dosage to come off it since it wasn't working anyway. Still getting migraines and headaches almost daily. Within a week of decreasing my dosage I felt back to normal in brain function. Now that I am off of it my headaches have actually lessened tremendously as well.

Posted By : catlover25 - 5/10/2015 2:26 PM
I wish someone could explain if Topomax would explain some symptoms that I have sometimes. I have been on 75 mg at least 5 yrs. I recently increased to 100 mg but I think I am going to decrease it back down to 75 or 50.

In the past year I have been hospitalized twice for coordination problems and difficulty walking. The first time was more severe with twitching in my face and some numbing sensation in my face. Also numbing sensation in my feet and part way up my legs both times. They ruled out MS. My head MRI and cat scans are always normal. Both occurred after I had worked harder at my job and lifted some things that put more strain on my back. It usually starts with a severe migraine headache.

Last March my first stay in the hospital the neurologist said it was because of the Topomax but I got this information second hand from the internist and didn't get an explanation from the neurologist. Without insurance I wasn't able to afford an office visit. I have had 2 psychiatrists tell me they don't believe it is the Topomax but I noticed when I recently increased it up 25 more mg I was having a numbing feeling in my legs without any hard work involved.

Anyone have any knowledge on how the Topomax plus the combination of me overworking could produce this kind of effect on me. I only work part time but have to be so careful on how fast I work and how to make it easier when I am working.

Posted By : deathbymigraine - 6/26/2015 7:55 PM
I'm thankful to find some useful information on here regarding chronic daily headaches & topamax.. Whenever I post something I get little to no answers from anyone.

ANYWAY. 22 y/o. CONSTANT 24/7 debilitating headache for exactly 26 months. Tried EVERYTHING from sinus surgery to acupuncture to pills to LEECHES (yes, the blood suckers)… Since last January I have been told by all 5 neurologists that I should try Topamax. Suffering from severe depression, anxiety, along with some other complicated health issues/a sensitive system, i said NO every time I heard the word. Finally, I've reached the end of what I can tolerate. I started 12.5mg Topamax last night, and had a horrible time trying to sleep. I already suffer form insomnia so I can tell this isn't helping.. I may switch it to morning. Or at least to afternoon. So far no other effects because the dose is so low.

Thanks for the above posts. You guys give me some hope that maybe this will help slow down my system. At this point, over 2 years in to a constant headache that has never gone below a level 4/5, it feels like my brain really has programmed this as "normal". So i PRAY and hope that this will reverse it.

Posted By : Sammylov1031 - 6/27/2015 3:47 AM
I just wanted to let everyone who takes Topamax know that it does have awful side effects yes. I have an AMAZING neurologist who goes to Italy quite often to learn new and updated techniques in medicine. I refused to take Topamax for a very long time because of the "horror stories" I read, not being able to remember your own name, car keys, not being able to say the words your brain wants to say. Awful awful things. He suggested that I take L tyrosine you can buy it at Sprouts, whole foods, Any Vitamin store. He told me to take it twice a day and EVERY single symptom would vanish from topamax, seriously like magic. ITS CRAZY. I am on 250mg daily and I have not one single symptom and never ever have and I am a person who is extremely sensitive to medications. I ALWAYS have bad reactions to them. I swear this is amazing. I have my mom take two a day for her memory, since she's a little older and she said she's noticed a difference in her every day life. My Neurologist takes it himself just to better his own memory lol. I just wanted to share this with everyone who is suffering but not having migraines, because its a win/loose drug. It helps with cutting down the number of attacks yet many suffer with awful symptoms. I hope this helps some of y'all! Best wishes and hopes for a migraine free future!!

Posted By : harley6652 - 8/7/2015 10:43 AM
Sammylov,

Amazing that L tyrosine cancels out symptoms of Topomax. I have some experience with that supplement would like to add. I have been having issues with silent migraines for a long time and it took me a long time to realize what I had. I conditioned my mind to accept sinus headaches, mysterious virus, fatigue, dizziness as they weren't permanent. Only when the symptoms became chronic and disabling did I connect all the dots of common triggers and my reactions since I was a kid. The headaches were never severe. It helped to have the right neurologist and clinic lead to that diagnosis. My other symptoms were concerning but not long lasting and I should have pursued more aggressively with my doctor instead of just bringing up an incident here and there. He always chalked it up to fatigue, stress or dehydration. I always looked healthy. Worked out regularly. He had no reason to explore further testing and I didn't want to look like a complainer. I have since learned about all my triggers and have played back in my head all the well known times and events when I had a migraine episode.

This brings me back to remembering a time when I was in my 20's when I had tried a supplement L tyrosine based on a fitness magazine recommendation and the results were so bad I thought I had been poisoned. I had a dizzy spell with nauseous with headaches that lasted for over a week. I could barely function. It was horrible. And as my episodes have gotten worse over the years I often wonder if taking that supplement had done something to my system. I recently did a internet search and a link did pop up and said for some people L tyrosine supplements or foods high in can trigger migraines. I now know that it triggered one of the worst migraines I had up to that point. I just wanted to add my experience with the supplement.

Posted By : Chotti - 8/7/2015 12:35 PM
I take topomax for migraines. It is very helpful. If I catch it early in the beginning migrain phase.

Thanks for sharing your experience on the L tyrosine. So sorry to hear about your reaction to this supplement. It may also have had an interaction with other meds you may take. Also knowing your triggers for migraines is helpful. I am very sensitive to many supplements and medications.

Topomax mechanism of action is unknown, studies suggest Topamax might alter the production or action of neurotransmitters in the brain, suppressing the abnormal activity of the nerves in the brain that cause seizures or preventing the abnormal activity from spreading to other nerves. Other research has suggested that it might suppress the nerves directly, thereby making them less likely to fire that prevent severe migraines.
"As long as there is breath there is hope, LIFE is a GIFT. "

Posted By : Paintyourwings - 11/26/2015 6:08 PM
I was on Topamax for about 6 months, but have now been off of it for a year. While taking Topamax, I had just about every side effect imaginable. I lost most of my words, I twitched like crazy in my face and right arm, I got the pins and needles. Make a srntence? Nope, can't even do that. Palinopsia? Check. Alice in Wonderland? Check. I can't even eat certain foods, because it serioualy taste like ***. Annnnnd all of these side effects I had are solely caused by the Topamax. And guess what? I still have them.

My neurologist told me that these side effects were primarily 1 in a million (besides the pins and needles), but I got them. Still do. It has sincerely ruined my life. I dropped 7 places in my high school rank because of it. I was a straight A student. Not anymore. Great, isn't it?

Topamax can mess you up really badly. For christ sake, sometimes I can't even spell my name (it's only 5 letters) or.remember which hands my right or left. So. Yeah. There's my little short story. So, if any of you alsace these, you're not alone.

Posted By : fenafair - 4/13/2016 10:23 PM
I have been on Topamax for 13 years I suffer from chronic migraine headaches along with bipolar disorder. I also get botox injections for my headaches. In the beginning I started out at 25 mg of topamax a day now I take 650 a day. It has fried my brain, I have no concentration, memory, I'm disabled I shake but it defiantly helps my headaches. So,what's the lesser of the two evils.

Posted By : beemerw45 - 11/24/2016 8:58 AM
i have been on Topomax since 2002..car accident..severe tbi..Neurologist said the migraines were due from the damage to the Limbic..first pain, then seizure...went up to 400mg..Now some docs nickname it "dopamax" because yes it causes you to have almost like memory loss, forgetfulness, it can mimic brain injury..at first I even got physically sick because of stress..then it calmed..it also causes weight loss and believe or not some people volunteer to take it for weight loss at high doses like 400...nut with my second car accident the migraine pain went away and the seizures are less but do not detect on EEGS..they are found to be PSYCHOLOGIOCAL seizures//the neurologist used to relate them to migraine now i can wean..so on 100 now i have a new cognitive feeling again..as I have always felt my brain comeback...the medicine is great for Migraines..as MIGRAINAL is..but cogniyively..you do have to check yourself based on the dose...

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