Topiramate users, whats your dose?

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deltaforce
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Date Joined Jun 2010
Total Posts : 2250
   Posted 10/12/2010 11:46 AM (GMT -6)   
Hello folks,

So I started topiramate yesterday. My neurologist has prescribed me in a following fashion.

First week, 25mg at night
Second week, 25 mg, twice a day
Third week, 25mg + 50mg
Fourth week, 50mg, twice a day

Since she sent prescription to the pharmacy, I didn't get a chance to ask her why she prescribed like this. Hence wondering, what dose is helping the users? Previously, I have used 200mg metaprolol without any help. Neproxen 250mg is ultimate solution but it exacerbates gastrointestinal bleeding.

Thanks in advance.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 10/12/2010 12:04 PM (GMT -6)   
Hi Deltaforce,

The secret with meds like Topiramate is to very slowly increase or decrease the dose. The slow increase helps with side effects. Each of us will respond to a different dose as we are individuals and experience these things differently.

I only ever got up to 75mg per day before the side effects were too much for me, and I took it much slower than the regime that I was given (which was the same as yours).

Now others have needed and tolerated a much higher dose, it varies from person to person. Hope this helps.

take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

kpirwin
New Member


Date Joined Nov 2010
Total Posts : 3
   Posted 11/30/2010 3:35 PM (GMT -6)   
That's pretty much what my dosing what. I really hated being on the high doses of topamax- the highest I got I think was 150... although it helped I was pretty stupid on it. So I weaned off it. Now I am having hard times and am back to 100 mg.

deltaforce
Veteran Member


Date Joined Jun 2010
Total Posts : 2250
   Posted 11/30/2010 10:53 PM (GMT -6)   
kpirwin,

How long you were on 150mg and what made your neurologist to reduce your dose? Could you please elaborate on your hard time, unless its too personal.

I am quite find with 100mg per day, headache is now once a week. My stress at work is also reduce quite a lot, now that I decided to quit but I am facing 'losing a thought' issues. I am ready to go with it as long as once in 3 days headache doesn't show up again.

Thanks for your comment.

fashoom
New Member


Date Joined Dec 2010
Total Posts : 9
   Posted 12/12/2010 9:57 PM (GMT -6)   
I'm on 75mg/day. At 100mg I suffer exhaustion and have to sleep 12 hrs/day. I do have some word finding issues and memory loss but i'm not sure I can blame the Topomax.

caligirl2001
Regular Member


Date Joined Jan 2010
Total Posts : 197
   Posted 12/13/2010 1:51 AM (GMT -6)   
Hi deltaforce, that is exactly how my neurologist had me take topamax when I started. Going up on the dosage in 25mg increments helps minimize the impact of the potential side effects, as opposed to having them blind side you. It took 75mg for me begin to feel noticeable pain relief. I am on 125mg. I started in May and wound up with the dose I am at now in July. I take 50mg in the morning and 75mg at night. No major side effects for me, unless you count being unable to drink carbonated beverages and losing 15 lbs a tragedy. Compared to the pain relief that this medication has provided me with, any minor side effects have been well worth it. I went from having no life because of my migraines to being able to function again because of this medication. At this point, I do not want to contemplate what my life would be like without Topamax.

Everyone reacts differently to medication, and everyone has a different tolerance level. The only way you will find out if this helps you will be to take it and to give it a fair shake. It can take several months for your body to fully adjust to the medication and to see if it will really help you. You may notice some side effects, especially during the first few days after changing your dose. But it is possible that being patient and waiting it out, most will go away. The only lingering issue I have is with carbonated beverages. I can't sense carbonation at all. I don't feel tired from it, I don't feel a lot of pins and needles and when I do the feeling usually lasts only a few minutes, and I don't have any more problems with memory now than I did before I took it.

Good luck, and I hope topamax helps you as much as it has helped me!
Fibromyalgia, High BP, Migraines, anxiety, Non Celiac Gluten Intolerant
Current medications: Topamax, Maxalt, Lotrel, Wellbutrin

S0lfire
New Member


Date Joined Dec 2010
Total Posts : 2
   Posted 12/20/2010 11:05 PM (GMT -6)   
Hey Deltaforce,

I am currently taking 200mg of Topiramate (100mg in the morning and 100 mg at night) I was originally taking 25 mg at night then that was bumped up to 50mg then 100 mg every month or so. I have a fairly complex cluster like migraine with aura. The 200 mg of Topiramate has been able to virtually eliminate all of my aura symptoms but none of my pain symptoms. I have not noticed any side effects with Topiramate but then again... so many of Topiramate's side effect match my migraine symptom list I could have them early on with the lower doses and not notice. Either way, I am glad I am on it.

Best Wishes.

KimberlyMA87
New Member


Date Joined Dec 2010
Total Posts : 4
   Posted 12/27/2010 10:02 AM (GMT -6)   
i take 50mg in morning and 50 mgs at night. 100mg total. i have gone from 22+ migraines to about 9 a month but thats when i take my other migraine medicine. and when the other medicine doesnt work i wind up in the hospital.

deltaforce
Veteran Member


Date Joined Jun 2010
Total Posts : 2250
   Posted 12/29/2010 11:31 AM (GMT -6)   
Thanks folks for all the replies.

My migraine is pretty much under control with 50mg + 50mg topamax but still shows up once a week, so I have only 6 days week. The day I have migraine, I am essentially useless and only 2 Ibuprofen 400mg work. I am looking alternative to NSAID but haven't found one.

Planning for a CT scan very soon, lets see if I see anything in there, otherwise may ask the neurologist to up Topamax dose. I am losing appetite though, not too sure if its topamax. I am feeling a bit of memory loss as well but I have been going through very stressful situation (hence have quit the job). I will be changing lifestyle soon. I will see if there is any change in coming months.
Diagnosed March 2007 with left sided UC at the age of 30.
Currently on,
Colazal 9 daily,
Imuran, 100mg + 50mg
Vit. B12, 1mg
Multivitamin, 1 tablet daily
Fish oil 1200mg daily
Vit D 2000 IU daily.

Topamax 50mg + 50mg daily for migraine with aura. Migraine appears once a week, Ibuprofen 400mg is the only solution. Looking for alternatives.

caligirl2001
Regular Member


Date Joined Jan 2010
Total Posts : 197
   Posted 12/30/2010 2:11 AM (GMT -6)   
Hi deltaforce,
I am glad to hear the topamax has helped. Yes, it is likely the culprit in your decreased appetite, but that should level off. Talk to your doctor about your dose. It may be for you like it was for me and you just need a little more to get you under control. The extra nudge up to 125mg helped considerably. Looking back at my migraine diary, I was down to 10 migraines a month, 4 severe on 100mg. Since bumping me to 125mg, I usually get only 1 a month that requires maxalt. Your stressful situation could also be affecting your weekly migraine as well. I know stress has a big impact for me. I get no relief from OTC medication at all.
Fibromyalgia, High BP, Migraines, anxiety, Non Celiac Gluten Intolerant
Current medications: Topamax, Maxalt, Lotrel, Wellbutrin

kikkomom
New Member


Date Joined Dec 2010
Total Posts : 6
   Posted 12/30/2010 3:22 PM (GMT -6)   
Brand new to forum in fact first post ever doc just started on topiramate first week 1 25mg at night second week 25mg at night and 25 mg in morn this week 50mg at night and 25 in morning wants me to up the dosage now because i am still haveing daily migraines but personally i am not so sure what i am allways feeling on migtrains that is why i just joined to get others opinions.

I get tingling in right side of body usally ankles fingers and knee face and nose
and last couple days i have felt really cold but head has been killing me so bad too. so i dont know if med (since i just started taking 50 mg at night or due to head hurting more.

foodnag
Regular Member


Date Joined Jan 2011
Total Posts : 37
   Posted 1/4/2011 4:31 PM (GMT -6)   
Hi all! Thank you for all of your considerate replies, I am new to this forum myself although have been dealing with migraine headaches for 19 years (yikes! I actually just calculated that and surprised myself!)

I take topiramate 50mg twice daily also...I got really bad cognitive side effects that didn't go away at doses higher than that (word-finding trouble, concentration problems). I will warn you though most MD don't tell you about the potential for kidney stones!! I have been taking it for 5 year and I had my first experience with a kidney stone this summer. NOT fun at all! But I will say that the topiramate has otherwise "saved" my life in that I can function day-to-day without as many breakthrough headaches. So I now I drink like 5 liters of water a day and take Urocit-K :-) actually I may start a thread asking other about that..

Good luck!
Eat food. Not too much. Mostly Plants. -Michael Pollan

restora
New Member


Date Joined Jan 2011
Total Posts : 3
   Posted 1/12/2011 6:49 PM (GMT -6)   
i'm taking 60mg a day , though trying to get hold of the 15mg is quite difficult , most pharmacists dont stock.
I hit a wall with alexia recently , GP reckons its aura not meds, but I'm not so sure. Has anyone else has experience of alexia?
Good luck all !

Carly Corday
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/24/2012 4:36 PM (GMT -6)   
I got to the fourth week on T., endured four days on 50 mg. am, 50 mg. pm, the WEIRD taste and smell, the increasing muscle weakness, especially upper body, although strangely I could go much longer than usual on my low-impact leg exerciser equipment and even situps. The icky taste and smell diminished, but I could have slept around the clock, and it tired me out to take a shower, wore out my arm to brush my teeth! I dropped back to to 25 am, 25 pm. I'm ready to combine it with a shot of Imitrex (I've never tried it) up my nose the next time I'm hit with a monster that makes me throw up for 12 hours and cry to God "Why, why, why!!" But I'm not ready for what 100 mg a day of Topiramate does to me. Please don't suggest REAL TOPAMAX. I'm uninsured. I'm already getting the Topiramate from around the globe via Canada, it's the only way. Until recently, even that was priced out of my range. (I'm 62. I think this drug knocks old people down on their hineys, maybe? My migraines had lessened in my thirties, gone completely away in my fifties, but returned as bad as ever after I quit smoking and my last child grew up. I keep thinking this is a joke, or I'm dreaming, that it's temporary and the headaches will just go away again.)
 
Happy 2012, fellow sufferers. Hope it's all better by now for the ones who posted above.

Carly Corday
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/24/2012 4:49 PM (GMT -6)   
PS: I like the "tingling" when I lie down to sleep. I did not like it at all in the beginning. Also, have had 2 migraines since starting the medication. Both have been manageable with Tramadol and Excedrin and Phenargan, no vomiting, shorter in duration, even though I was hit at the beginning of this topamax try-out with two gigantic aggravations on the family front and one on the financial front, the kind of stuff that usually sends me straight to Planet Migraine to re-learn just how bad a head can hurt and for how long. But there's still time. I have very delayed reactions to these things.
 
AND, the 50 mg dose twice a day made my head hurt all the time! Not migrainal, just a swollen head pain all through my forehead and eyeballs, and a constant vague nausea, not to mention the incredible dry mouth, dry eyes, dry skin, dry nasal passages--this "cure" is the second cousin of the disease! It was awful. There I was, taking 2 Tramadols and 2 Excedrins am and pm, the very junk I don't want in my system anymore, thinking about how at least I wouldn't be getting a migraine when I finally met my littlest grandchild in November...and weirdly, having no energy about seeing her anymore, thanks to this deadening medincine. No, my tolerance for the side effects is NIL at my age. But 25 mg twice a day is working fine. It was also making me STUPID at that higher dosage, and I was finding myself not caring if it did. I tried to give it more time but when showering and brushing my teeth nearly wiped me out, I had to give it up. After all, my heart is a muscle. What if it made my heart decide to be tired and just quit, like my arms and back?

Post Edited (Carly Corday) : 9/24/2012 5:09:38 PM (GMT-6)


holycrap14yrcont.headache
New Member


Date Joined Sep 2012
Total Posts : 3
   Posted 9/26/2012 12:55 PM (GMT -6)   
Hi there, I have suffered from a constant debilitating headache for 14 years and have been taking topamax (topamirate) for 6 years. I was taking 1200 mg a day - 100 mg x 2, 6 times a day but was having alot of issues and went off the pills for a year. Now I am back on it at 25 mg, 4 times a day, fortunately for me I don't seem to get many side effects that I notice anyway. But it could be hard to tell, when the headache is worse I lose all feeling on the right side of my body, so I wouldn't feel tingling and I'm tired all the time from that sleeping disorder that makes you tired all the time and I had a stroke in December so I have no energy and am having trouble getting my energy back and after 14 years of headaches and medication and surgeries my brain is not what it used to be, so anyway hope this helped. I think topomax is great that is all.

macawgirl
New Member


Date Joined Nov 2012
Total Posts : 2
   Posted 11/5/2012 11:28 PM (GMT -6)   
Hi I am new to Topiramate. I started with 12.5 half of the 25, I couldnt take the full 25. The side affects were horrendous. For the first 2 days I could handle the 12.5, than i couldnt really handle the migraines anymore, so i went gung ho and was determined to make this stuff work (migraine suffer for over 20 years, almost daily migraines). so than day 3 and 4 and 5 and 6 and 7 I did a half before bed and a half at about 6 in the morning and did good. My main side affects were strange dreams and constant thirst which led to constant peeing. I noticed soda started tasting funny. But the migraines were going away. So the second week I started doing the full 25mg at one time, but noticed I was still getting migraines so I started taking them one time at night before I get to bed and than one time in the morning the next day. Side affects were pretty much still the thirst, and constant peeing, I have had some light tingling, but not a whole lot, I have had some light lack of muscle cordination, like accidently dropping something. But not a whole lot. What I did get though was a tongue ulcer, now i am not sure if it is from the meds or not. I know that i did burn my tongue last week on coffee, but usually it goes away much faster. I looked at it the mirror and it seems like it is open underneath. I drink alot of water,so I am confused on this one. Right now I am up to 50mgs a day sometimes. 25 before bed, and 25 in the daytime, now if I do get a migraine going I will take another one, if I don't I just stay with the 25. It is working miracles with migraines. I am losing weight too. I don't have a scale so no clue how much, but before I got on the meds I was a size 16, I just bought a size 14 slim and a size 12 super stretch at american eagle, and some of last years clothes in xl's are fitting very well. My regular 14 american eagle jeans are falling down. So I am thinking maybe 10lbs? I made a cheese sandwhich with light mayonnaise, and either the bread or mayonaisse smelled like cat pee,, and i know my kitten didnt jump on my counter and pee on the the sandwhich, so my smell is affected too. Thank God tea isn't losing its taste. I love my soda and my tea. And ya soda is out. So did anyone experience the Tongue sore isssue? My tongue hurts. I did have a sore throat too. I am not sure what to do about this one. It hurts but I think its more tolerable than the migraines. I just talk with a lisp now lol~!

macawgirl
New Member


Date Joined Nov 2012
Total Posts : 2
   Posted 11/5/2012 11:39 PM (GMT -6)   
Carly Corday said...
\Please don't suggest REAL TOPAMAX. I'm uninsured. I'm already getting the Topiramate from around the globe via Canada, it's the only way.   Carly I am unisnured. I have seen doctors and been prescribed everything,, So I went overseas to get my Topaz brand aka Topiramate because everyone said to try it, so I did. This is the ONLY thing that is working and doesnt make me feel like I am in Long Island Ice Tea land where you had one too many, and one step away from puking and passing out. OTC well, Psuedephederine stuff worked briefly. I have had daily migraines since I have been 12. I am 41. Even some Complex ones.This was the best $60 I have ever spent! I have been migraine for 8 beautiful days! 8 days where my head doesn't feel like someone is squeezing my head together trying to get my brain to pop out. It was the best $60 I have ever spent!  (and am even losing weight pretty fast!)
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