Topamax for migraine prevention?

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Mary-Anne
Veteran Member


Date Joined Nov 2004
Total Posts : 508
   Posted 2/21/2006 12:34 PM (GMT -7)   
Hi there - usually post on the lupus forum and fibro (well, anxiety and depression lately too, I'm just all over I guess), but I've been having problems with headaches, I suppose there's been a lot of stress in my life, but certainly the headaches have crossed that line from stress to migraine. My rheumy didn't like me being depakote for migraine prevention, which didn't bode well with me either, made me feel horrd, and I've tried all kinds of other meds out there (bp, tricyclics, anti-deps...) now we are onto Topamax. I just started taking it on Saturday, 25mg a day so far, and then next week 25 in the morning and then in the evening. I feel no side effect, it doesn't make me sleepy, but when I take my night time meds (I take 1mg klonopin for RLS and 75mg seroquel for insomnia) I am out for the count until the morning...Sleep is imperative for the healing of my body with the fibro.
Has anyone ever taken the topamax? How have your experiences been? I would really like to know because this drug seems to cover a variety of things (even lupus and fibro) but I didn't realize it needed to be taken every day, so I guess when I see the doc, I need him to renew the Zomig prescription for when the migraines flare?
I'd really like anyone who can to share their experience with me!
Blessings,]
<I>

<FONT color=#800080>




<FONT color=#800080>sjogrens - 2005




<FONT color=#800080>meds - Plaquenil, Zelnorm, Klonopin, Seroquel, Zomig, Ultram, Zyrtec, Flexeril
, Topamax


Mary-Anne
Veteran Member


Date Joined Nov 2004
Total Posts : 508
   Posted 2/21/2006 12:38 PM (GMT -7)   
what happened to my signature?
Blessings, Mary-Anne
]

<I>

<FONT color=#800080>




<FONT color=#800080>sjogrens - 2005




<FONT color=#800080>meds - Plaquenil, Zelnorm, Klonopin, Seroquel, Zomig, Ultram, Zyrtec, Flexeril
, Topamax


tymaboy
Regular Member


Date Joined Aug 2005
Total Posts : 59
   Posted 2/21/2006 3:09 PM (GMT -7)   
I've been on Tomamax since Aug (I believe) Some of the side effects ca be ruff, but it was worth it for me cuz I rarely get a migrain any more. Once in awhile I wile get a small headache but it will only last a few hours if I take something for it. Just within the last 2 months my memory has seemed to leveled off with it (memory loss is a side effect) Everytime I would up my dose my mouth would get very sore, so I would up my doses slowly instead of every week like the Dr. wanted.

Mary-Anne
Veteran Member


Date Joined Nov 2004
Total Posts : 508
   Posted 2/21/2006 5:03 PM (GMT -7)   
I just picked up the full prescription today (they had to transfer pharmacies so I had one a day since Friday) and it said take one a day for a week and then two twice daily...they can't be taken together at the same time? I didn't read where my mouth would get sore, what do you mean, dry mouth or a sore in your mouth?
Blessings, Mary-Anne
]

<I>

<FONT color=#800080>




<FONT color=#800080>sjogrens - 2005




<FONT color=#800080>meds - Plaquenil, Zelnorm, Klonopin, Seroquel, Zomig, Ultram, Zyrtec, Flexeril
, Topamax


tymaboy
Regular Member


Date Joined Aug 2005
Total Posts : 59
   Posted 2/21/2006 5:13 PM (GMT -7)   
My Dr told me to take mine all at the same time (before I go to bed) My gums got sore & so did my tongue. It only happened whened I would up my dose & it would last for 3-5 days thats why I would wait a little longer then a week to up my dose cuz I wanted afew days longer to where my mouth was not sore. Its not listed on the sheet but it would never fail every time I upped it & even quite a few people here on the boards have mentioned about their mouth getting sore too, but then some people don't have a problem with it.

Natali
Regular Member


Date Joined Jul 2005
Total Posts : 34
   Posted 2/22/2006 7:19 AM (GMT -7)   

I hesitated to post since I hate to be negative, but I could not tolerate Topamax. I had terrible memory loss and evil mood swings, and irregular heartbeat. I was ok on 25 but when I went to 50 the side effects started. I hung in for 6 weeks to no avail (except it did help my headaches!!).

I have read alot of people here are helped on Topamax, so I would say, keep trying. If the side effects are too much then you can stop it. I had no problem stopping, the side effects stopped immediately.

I work at a stressful, detailed job (cpa during tax season)  so maybe the memory loss was worse for me, i dont know your situation but maybe it will pass if you stick with it. Best of luck to you.

Now I am stuck with the headaches. I am going to try Neuronton after tax season. I also had terrible nausea with Depaokote. I seem to be very sensitive to many meds.

Mary-Anne
Veteran Member


Date Joined Nov 2004
Total Posts : 508
   Posted 2/22/2006 7:33 AM (GMT -7)   
Please don't worry about being negative, I want to know the good the bad and the ugly. I was doing some research and there is just so much that can be written and then you need to include the human experience.
This morning I woke up with intense heartburn and I thought that was odd, but some antacid took care of that, so it's gone. The headache is still there, trying to handle it with tylenol right now, but it's not working very well, but it's tolerable. I see the doc next Friday.
I am blessed to be a stay at home mom, so I have cleared my schedule for the next few weeks to make sure that whatever I have to do can be done during times when I can have help (my mom lives nearby, just moved here in Jan); but my kids do drive me nuts! They are 15, 12 (going on 21, female) and 9...and there is always something. I am nervous about the memory loss as I already have fog due to lupus and fibro, so I think I am going to keep this side effect to myself and not put it out there, lest I be taken advantage of! My kids aren't horrible, they just have their seasons like we all do I guess.
I, too, am sensitive to meds, if Topamax doesn't work,the next one will be neurontin, I just wen this way first because the side effects were the ones I liked better. the depakote was horrible, I was holding onto the walls.
It will be nice to not have headaches, they just put a cloud on the whole day, I hope this works for me! i am not fond of the neurontin side effects and I truly don't know where I go from there. My doc is adament against any narcotics, we argue because I tell him he makes me feel like a junkie asking for a fix when that is not the case, but I think we are slowly coming to an understanding, I pray it is so anyway, will know next week!
thank you!
Blessings, Mary-Anne
]

<I>

<FONT color=#800080>




<FONT color=#800080>sjogrens - 2005




<FONT color=#800080>meds - Plaquenil, Zelnorm, Klonopin, Seroquel, Zomig, Ultram, Zyrtec, Flexeril
, Topamax


philski
Regular Member


Date Joined Dec 2005
Total Posts : 34
   Posted 2/22/2006 2:47 PM (GMT -7)   
Be patient with the topamax and never increase the dosage by more than 25 mg/week. Best advice I can give you. Some people get really weird side effects, rushing the dosage too quick is a surefire way to get them.

Only side effects I experianced were a little bit of weight loss initially and a constant headache when we adjust the dosage. But that goes away once the dosage settles. The pain is very distinct, I know when the migraine is due to adjusting dosage versus a normal migraine.

Topamax either will work for you or it won't but you have to give it some time to settle in your body, don't get too impatient. It may take several months to get the dosage right. Patience :)

Mary-Anne
Veteran Member


Date Joined Nov 2004
Total Posts : 508
   Posted 2/24/2006 6:30 AM (GMT -7)   
Well, happy news, this is the first morning in I don't know how many that I did NOT wake up with a headache...and I do have some congestion (my oldest son has mono and my hubby has strep but he's away on business right now) but no headache - could it be that the topamax is working already or am I jumping the gun and today is just a good day? well, I'll take whatever I can get!
tomorrow I start on 50mg, and I see the doc a week from today.
I am amazed that with my son having mono and my hubby dx with strep on Tues and me having lupus that it's Friday and I don't have strep! Amazing! I know this isn't for the migraine forum, but I can't contain myself, I am amazed!
Blessings, Mary-Anne
]

<I>

<FONT color=#800080>




<FONT color=#800080>sjogrens - 2005




<FONT color=#800080>meds - Plaquenil, Zelnorm, Klonopin, Seroquel, Zomig, Ultram, Zyrtec, Flexeril, Topamax
,


CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 2/25/2006 12:49 AM (GMT -7)   
devil   devil devil devil devil devil devil
Mary-Anne,
It's too early for the Topamax to be kicking in enough to be preventing Migraine attacks yet.  I, personally, am tapering off Topamax as we speak.  My neurologyst had me taking all the way up to 400mg a day.  It did absolutely nothing for me except give me all the really adverse side effects, which are just too numerous to list. skull   I think I've taken every other preventative there is, so I guess I'll just have to trust that I'll always have my abortive, Stadol NS, with me at all times.
 
Let me know if you have any questions.  I've had Migraine attacks for thirty some years.
 
Leigh Ann cool

"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett


Mary-Anne
Veteran Member


Date Joined Nov 2004
Total Posts : 508
   Posted 2/25/2006 7:45 AM (GMT -7)   
Well, today is the day I start with 50mg, sounds measly with your 400mg, but I can't imagine having migraines for 30 years, NOR can I imagine a doctor that would give me a med like stadol to carry around with me! To get Tylenol 3 in my doctor's office is like trying to - you know, there is no comparison, it's just so amazing, you have no idea, I walk out of there in a sweat and I'm not even happy, T3 is not success to me for pain relief.
I hope you have help and find some kind of success, the migraines for me have been bad, but not in the sense that I've read about with other people, especially here on this forum, so I guess I am lucky. If this med covers the migraines and we can downgrade on pain relief for the lupus (not as much) and the fibro (definitely) that would be great. This med covers that too, and it would just be a good thing all the way around, if it works, the jury is still out.
Blessings, Mary-Anne
"Even though I'm walking through the valley of the shadow, I will hold tight to the Hand of Him whose love will comfort me, and when all hope is gone and I've been wounded in the battle, He is all the strength that I will ever need, He will carry me."


dx: lupus 2004, sjogrens 2005
RLS, anxiety, IBS, migraines

Meds: Plaquenil, Zelnorm, Seroquel, Klonopin, Ultram, Flexeril, Zomig, Topamax

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