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Does anyone take Topamax? Migraine help.

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SeaStar

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I started having migraines at age 6 and they lasted all throughout my teenage years, at least 2-3 a week and sometimes more. It wasn''t until my hormones changed in my early twenties that the headaches leveled off and I only had a couple a year....until now. They''re baa-aaack and with a vengeance. It started a month or so ago with a ton of silent migraines, I''d just lose my vision with lightning flashes in my peripheral vision and occasionally get a dull headache. Two rounds of 800 mg of Motrin would be enough to make them go away completely. Now I''m back to having them a couple times a week, they come on suddenly and I just won''t be able to see what''s in front of me, like whatever is there just darkens out as if it''s not there, then the lightning flashes come and spread to both eyes followed by a splitting headache and nausea. I was helping a patient labor at work and I just suddenly lost my vision and BAM, horrible headache. If it happens while driving I''m screwed because it lasts a long time. I don''t remember having them quite like this when I was younger but they seem to be getting worse every time I get one. I went to a neurologist and he tried every single migraine escape medicine, a couple neuroleptics, and the only thing that worked was 200mg of Topamax a day. I was young back then and smart enough never to read the package inserts but now I''m really worried about starting it again with all the side effects. Many people have said they feel like they''re in a zombie state and don''t feel any kind of emotion. If you''ve taken it what was your experience? I want to know the good the bad and the ugly.
 

luvthemstrawberries

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Hi SeaStar. I supposedly have migraines. I don't take Topomax, and have only recently tried my first true migraine med - Treximent - and it made me feel worse than I did with the headache. I have yet to find the right solution. This is a thread of mine from the past couple weeks about migraines though, and maybe it'll be of some help to you - I do know people were discussing Topomax in it. https://www.pricescope.com/community/threads/migraine-help.116740/
 

SeaStar

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Thank you. BTW your symptoms sound more like cluster headaches than migraines to me.
 

kittybean

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I took Topamax for over a year, and it seemed to somewhat help my migraines. I did notice some of the "fogginess" people have complained about, but it wasn''t serious enough to make me stop taking the medication. After about a year, it stopped helping for some reason. I''m not sure what changed, but it didn''t make sense to keep taking it, and my neurologist decided I should try something else. I''ve been on an antidepressant (SSRI) lately, and it seems to be helping, mostly by making the headaches I get more treatable.

Hope you feel better soon!
 

Linda W

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Hi SS, I take Topamax for migraines. I take 200mg a day. I have taken them for a year and I have not had a migraine since.

At first I had the side effects that people talk about, but after a few weeks they disappeared. They are a blessing for me.
 

loriken214

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Hi Seastar!

I''ve been taking Topamax for several years now and it helps me a great deal. They''ve come out with a generic version and I''m on it now. I take 50mg twice a day. It helps with my migraines and my OCD cravings.

Lori
 

luvthemstrawberries

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Date: 6/10/2009 9:51:02 PM
Author: SeaStar
Thank you. BTW your symptoms sound more like cluster headaches than migraines to me.
Thanks for the input - you could be totally right. You sound like you've had a lot of experience with migraines. I didn't think the Treximet helped the actual headache much anyway. The doctor said it sounded like migraines because they were episodal. But I guess the "episodes" could just be constant headaches?
 

SeaStar

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Imitrex did absolutely squadoosh for my migraines. Could be, but you really could be experiencing several variations of the headache throughout the day, manifesting in different ways. The extreme facial pain makes me wonder if you might be experiencing cluster headaches, which unfortunately, migraine medications don''t touch.
 

House Cat

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I take Topamax for migraines. I don''t have any lack of emotion.

What I have experienced with Topamax is the usual side effects, which is forgetfulness, certain foods taste strange now, my hands will tingle sometimes like they''re asleep, and a low grade dehydration. I stated on another thread that I was able to reduce these side effects by taking only 100 mg of the med. The idea with any long term med is to take the smallest amount possible while getting the greatest effect. The hand tingling is caused by low potassium, so I was told to eat a banana. The forgetfulness was reduced but not eliminated by the lowered dose, but it does fade once you take the med for a month or two.

The thing is, none of these side effects were worse than the migraines themselves. You have to weigh the good and the bad. Having your vision impaired while driving sounds dangerous. I think I would take the Topamax.

I think any of these types of meds have an adjustment period. Once you get through it, you feel fine. My son had to take meds for seizures and had this same adjustment period. It''s tough to get through the first few months sometimes, but the side effects do fade.
 

atroop711

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I was on them for about 4 months. It helped with my migraines and I felt like myself BUT I developed horrible IBS. I had to stop because I couldn''t keep anything in my stomach.
 

mausketeer

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Hi SeaStar - wow, your headaches sound BAD. I''ve had migraines since puberty but if I could "catch them" with meds before they get past the tipping point, they wouldn''t get full blown like yours do. I''ve been on Topamax for about five months (it was to the point where I was getting headaches EVERY single day - was waking up with them in the morning. I''m a teeth grinder too - I have TMJ) At first I had problems with the same side effects as someone else mentioned, but yeah, drink enough water and it was okay (although I had a kind of "spacey" moment when I was driving that was kind of scary but that was on the second day on the meds and I had had a cup of coffee. Just be careful until you know how it affects you if you DO go on it and don''t drink caffeine within a few hours of taking it! Very important!).

But one GOOD thing about it (that isn''t supposed to influence whether or not you go on it but hey, I gained weight from my LAST medication so.... if I can get something positive out of a side effect for ONCE, I''ll take it!) the Topamax makes me lose weight! I am consistently losing about a pound a week without really trying. Not sure why. It seems to have a slight appetite suppressant quality to it. I''m down about 20 pounds from when I first started on it and as I said, I was about 40 pounds overweight from another medication I was on so...... yay for Topamax! Oh yeah, and my headaches are about 50% better too. I still get them in the mornings, but they''re not as bad and not as often. I like it. I will stay on it as long as it continues to work this well. Hope it lasts (fingers crossed!)
 

Rock_of_Love

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I use Relpax for migraines, but I only get them once or twice a year. I''m a pharma rep and I used to sell migraine meds, too.

I''ve heard really good things about topamax as prevention, then you usually have your triptan for breakthroughs.

FYI on side effects of Topamax...I have heard the fogginess / forgetful is pretty common, BUT a nice side effect is you lose 10% of your body weight on average. It is used "off label" for weight loss. I have a friend who takes it for this, started about 4 months ago and she has already lost a ton of weight.
 

SeaStar

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I don''t remember losing any weight on it as a teenager but then again I probably didn''t pay much attention. How many mg are you on per day for those that are losing weight? That would be a nice bonus!
 

Linda W

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SS, I started with 100mg a day and I lost 15 pounds
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, It was an added bonus.
 

mimzy

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i take a small dose of topamax daily as a secondary treatment for paroxysmal hemicrania....so not migraines but a different form of headache. i just traded nortriptyline in for it, and i am relatively happy. i still have pain on a daily basis, but it''s more manageable and doesn''t it interfere as much as it used to.

i''m happy to report that i don''t have any bad side effects, but my dose is pretty wimpy!(30mg a day). also, it''s not a very sophisticated forum, but www.askapatient.com is usually a good source of info when it comes to the good/bad/ugly of drugs! i hope that you have good luck with it :)
 

anyname

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Jul 18, 2008
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I take 100 mg of topomax a day i don''t have the fogginess or any of the loss of emotions. But i still have migraines sometimes but no where as frequent as i used to get them. My neurologist that''s fine. However, I used to take toporol, which is a beta-blocker and that did kill all sorts of emotions in me. While i was on it i was nearly in car accident, and afterwards i noticed that my heart rate never changed and i didn''t feel anything, and i figured that probably wasn''t a good thing, not to have any kind of flight or fight feelings.
 

risingsun

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I take 75 mg bid for migraines. I''m trying to increase to 100 mg bid, but the tingling in my hands and feet really bothers me. I have ~3-5 headaches per week. Without the Topamax, it would be daily. I also have fibromyalgia, which makes one prone to migraines, although my migraines predate the fibro. It can be a difficult med to take, but it does supply some relief, in terms of prevention. For the actual headache, I use Zomig inhalers, which relieve the pain in 20-40 minutes!
 

fuzzypill

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Oct 26, 2004
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I''ve been on Topamax for almost 3 years now. It has done miracles for my migraines! I used to get them every week and they would last 2-3 days. Now I''m only getting them about once a month (when I get my period). I also take Maxalt for any onset of migraine and that really helps especially if I take it at the very beginning.

I have to say though that the Topamax affected my mental abilities/concentration/memory. I also found that I had an extremely hard time trying to communicate eloquently (especially when I had to do a presentation!). I only got tingling in the hands/feet for the 1st month but that went away. The highest dose I got up to was 100mg daily. But I decided to cut back on it a couple of months ago and slowly weaned myself back down to 25mg daily. Now I feel much better as far as my mental abilities and I can "find the words" again. Migraines so far have not rebounded (knock on wood). Big bonus: I lost about 10 pounds on Topamax (especially helped during my wedding!!).

On another note: Have you had an MRI/CT scan? Don''t mean to scare you, but I have a friend who had migraines that sound like yours (she would lose her vision too while driving too.). It turned out that she had a brain tumor. They had to cut out the tumor and she did radiation and chemotherapy but the tumor keeps coming back.

Good luck with your migraines! Hope you find what works for you.
 

tommalle

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Jan 4, 2009
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All I have to say is that when my doctor prescribed it to me he said that many people call it dope-a-max. It made me lose my mind. I couldn''t remember a darn thing.
 

risingsun

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Date: 6/13/2009 12:46:05 AM
Author: tommalle
All I have to say is that when my doctor prescribed it to me he said that many people call it dope-a-max. It made me lose my mind. I couldn''t remember a darn thing.
Mine, too
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