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Posted 5/14/2006 12:49 AM (GMT 0)

Hi everyone - just found this board, so glad I did!

I just started Topamax 3 nights ago (tonight will be the 4th) - only 25 mg to begin with each night for the first month or so.  My neurologist said we'll see how things go with that and if we need to, add another 25 mg dose in the morning.  I've had migraines since I'm 16 (I'm 47).  They used to be erratic and caused by various factors but now that I'm in that perimenopausal stage, they have become nearly entirely hormonal and nearly always come around the 4th day of my period, lasting for several days.  I've been taking Imitrex, which usually works ok, also tried Amerge but it took too long to get into my system.  In the past I've been on practically every drug out there - Fiornel being the one which kept me most pain free for the most years but eventually it stopped working. 

After a while I began to tire of this montly nonsense.  Who wouldn't yeah

Anyway, we first tried me on a beta blocker for 2 weeks out of the month, since it didn't seem necessary to be on a medication for an entire month for something that occurs usually only one portion of the month.  That did nothing at all.

So we decided to give the Topamax a try. I keep reading about side effects and obviously at only 25mg, it would be unlikely to get any yet however for the last 3 nights I have not had a good nights sleep at all.  I suffer occassionally from restless leg syndrome and it seems to be kicking it off.  Also, while most people complain about it making them sleepy it seems to be having the opposite effect on me.  The first night I barely slept.  I also had nightmares once I did fall asleep.  The other 2 nights were not great either.

Also, it seems to be making me get up to go to the bathroom much more than usual at night.  Last night I think I was up 5 times!  5!  That alone doesn't bode well for a restful night. 

Obviously I need to talk to the doctor about this, but this is the week I get my period and I'm eager to see if the Topamax has any effect yet. 

Anyone else have these effects? 

Thanks!  Best wishes to all of you other migraine sufferers out there - it's a tough road which not a lot of people seem to have a lot of sympathy for.

Posted 5/16/2006 2:48 PM (GMT 0)

Hi lady,

Good luck with the Topamax...everyone responds differently. Personally, I am up to 400mg of topamax daily (I am a tough case :-)  Anyway, I would not stop taking it unless my life literally depended on it!

It keeps my head pain down to a "minimum" (I know that is a relative term, but for me...its a few times a month now instead of all day, everyday!)

let us know how it goes

Sara

Posted 5/16/2006 3:38 PM (GMT 0)
Thanks for replying Sara.

So far, I don't know yet how I'm responding.  This is the week in which I'll be able to judge if it's having any effect yet.  I think it would be too soon let alone on such a low dose, but I'm hopeful.  The last few nights I've been sleeping better with it, however, this might be because I've also had to take my allergy medication which knocks me out all the time (Zytec) so maybe it's overriding the slight edginess the Topamax seems to give me.  Either way, during the day this small dose isn't leaving me with any noticible effects which is a good thing.

I'll keep the board posted as it goes along.  It would be nice after all these years to find something which would help minimize the attacks. 

BTW, I can't believe you're up at 400mg!  Wow!  Do you function ok on that?

 

Posted 5/16/2006 3:46 PM (GMT 0)
Just be patient. You won't know how well Topamax works for you for at least a few more weeks. People sometimes get ancy and want immediate results... just be patient :)

I got the whole laundry list of side effects at 200mg. I must be a weakling :) I only had very minor ones before that. Topamax was good for me for a while.
Posted 5/18/2006 10:25 PM (GMT 0)

Lady-

Topamax is the only preventative so far that has made this big a difference in my migraines! I have been extremely grateful for that! I have had to up the dosage a few times because my frequency and severity has increased from time to time for many reasons. I do very well and 400mgs and would cry if I ever had to stop taking Topamax.

I have just changed jobs and am terrified at the thought of being without insurance and just hope that my doctor will work with me as far as samples and maybe one of the prescription assistance programs until insurance kicks in!!!

hang in there and definitely let us know how it works for you,

Sara

Posted 5/29/2006 2:54 PM (GMT 0)

So, exactly 3 weeks into Topamax.  So far, hard to say yet how it's doing but I do have some side effects but none so bad to stop.

The odd soda effect is definitely there.  Not a problem tho since I pretty much never drink it anyway.  I have noticed that a lot of foods also tasted kind of "flattened" out.  So, while I'm eating, I can't say that my appetite is as strong as before, because nothing really is appealing.  This is a plus tho, since I'm a bit overweight (I'd lost 55 pounds over the past couple of years and still need to lose another 30 at least).  It's helping curb me from overeating at the moment, so again, not a bad effect.

I have noticed some small amount of pins and needles feeling in my feet at times, but not constant or even daily (I don't think it happened at all yesterday in fact, or today yet so maybe that is going away?).  The one thing which is concerning me is I've been feeling heart "flutters", kind of like my heart is occassionally skipping a beat and racing up momentarily.  Again, this has happened maybe once or twice a day, not a constant occurance but something I think I should mention to my neurologist. 

My mood is fine, no differences there.  I think I'm sleeping better than I was.  The first few nights I actually was having difficulty falling asleep, but that has passed.  I've been having some difficulty waking up in the morning because I have to get up at like 6:15 am (I commute into NYC from NJ). This has been the most difficult part.  I've taken to showering the night before.  This buys me a lot of extra time to sleep a bit more, which seems to help.  At least the sleepiness doesn't carry over into the daytime at all.  Once I'm actually out of the bed, then I'm fine.  But I have overslept a bit a few times.  Thankfully, nobody in my office is ever on time (except me) - even my 2 bosses never get in before 10am, so the couple of times I was a bit late nobody was the wiser yeah

Interestingly, yesterday, I woke up and felt very "pre-migraine".  All day I felt like I was on the verge of getting one however, it never flared up at all inspite of the odd way I felt.  By mid-afternoon, the feeling broke completely.  So, maybe the Topamax is doing something already.

Just thought I'd post an update - maybe more for myself than anyone else.  I'm trying to keep tabs on what this medication keeps doing.

Thanks for reading, if you did!

Posted 5/31/2006 2:12 AM (GMT 0)

I have been on Topamax for about 8 weeks now. Have had alot of side effects, including but not limited to; tingling in all extremities and face, lack of concentration, inability to think clearly, loss of knowledge (spelling and other knowledge), loss of patience (quick to anger), randomness of thoughts, nausea, dizziness, fuzziness in vision, lack of concentration, lack of interest (in previous hobbies), and others. I am persevering through, as I have read that it can take up to 3-6 months to really notice full effects. I am taking topamax to help with migraines, just started 50 mg am & 50 mg pm.

In some of my research, I have found that you can suffer an electrolyte imbalance which can explain many of the symptoms that many people have on topamax. My sister is also on topamax and has had many of the same symptoms, has started drinking electrolyte solutions (like the popular ones on tv). She has noticed extremely improved symptoms, increased energy, less muscle aches, nausea, etc (she was only on 25 mg). My doctor has put me on potassium tablets (1 week now) and I have already noticed a decrease in the mental capacity department problems as well as the nerve tingling. I have read several places about topamax side effects, and it seems that these side effects are treated as individual side effects and are not looked at as a possiblity of other problems (such as low electrolytes). If you experience nausea, dizziness, muscle fatigue/cramping, nerve tingling, lack of concentration, etc, try drinking electrolyte solutions for a couple of days to a week and see if your symptoms improve and if so, talk to your doctor. I am not suggesting that this will fix everyone's problems, but it has significantly made a difference in my sister's and my own life.

Posted 6/3/2006 4:22 AM (GMT 0)
I have been on Topamax for a year now and I am now up to 200mg daily plus I take Fioricet for the actual accourance of migraine. I have suffered with migraines since I was 12 (the begining of my mencies), and the only time in my life that I wasn't plagued by them was during pregnancy. So last year while my OBGYN was on vacation his PA took over and saw me (It was a SHE instead of a HE) compassion at last. She ordered a hormone panel and found normal HLS, Prolactin, but my Estrogyn came back 19 and Cortisol was high. I'm 28 but I've been having hot flashes, night sweats and irratic menstrual cycles since 23. She referred me to a Indocrinologist and during an MRI of Pituitary and Brain they find a growth and of curse those good ole white spots that an earlier MRI revealed. So I ask can this be the reason for the headaches? Doc says doubt it, slight chance. they have done EEGs, ECGs, Ect...and

they feel that the MRIs aren't conclusive. Now they want to send me to some Quack to talk about my stressors. I've left my fulltime job and stopped going to school, just to see for myself if "stress" is the actual cause. After a year I intend on going back to my doc with my findings. I have been on every migrain treatment possible When I was a child I had Spinal Meningitis and other ailments, I remember something about severe pain in my legs and braces from my hips to my ancles. Every night I had to chew an asprin before bed (I was told about blood clots at age 6), now I'm allergic to asprin. Basically this is still a corner of the medical field that they know very little about. If I could, I would just get pregnant again since that is when I feel my best, but now I don't even ovulate. So my heart and prayers are with all of you. Some how, some way, there will come an answer. Hopefully it will be soon!

Posted 6/7/2006 6:23 PM (GMT 0)
ladyfoxe59:

the premigraine stuff: yea, when I first started on Topamax I had that for about a week while I was working my way up to full dosage. It was almost a comforable pain though :) felt nice compared to the full-blown migraine.

We adjusted doses later (went from 100 to 150mg) and had the same thing happen again for 2 days.

FWIW
Posted 6/14/2006 8:10 PM (GMT 0)
I have been on Topamax for about 3 years, with minimal side effects. I am on 300mg at bedtime. For the past 6 weeks I have been having severe leg pain, and am now starting to have aching in my arms as well. I had tingling in extremities in the beginning of taking Topamax, but these symptoms are new. My gp thinks it may be side effects of Topamax, but is not sure. I have been on it for 3 years, without a dosage change. Has anyone else had severe leg and arm pain as side effects, that went away after stopping Topamax?
Posted 6/15/2006 3:46 AM (GMT 0)
   I have had Leg pains, pain in my elbow and roming pain in my shoulder, for about 6 months now. Doc doesn't seem too sympathetic and says it's probably weight or stress related. I wonder; What if I just cold turkey stop taking Topamax all together? totally cleanse my system of all meds for at least 40 days?

Posted 10/15/2006 3:25 AM (GMT 0)
Ladefoxe, I have been on Topamax for a week now and I too have experienced the opposite effect. I get anxious and suffer insomnia. I was on it a year and a half ago too and experienced the same symptoms. Since I was getting close to getting married at that time I thought that maybe it wasn't the topamax. Now I know that it is. I'm really curious if you are still taking it, what dosage and how you are managing the restlessness/insomnia.
K.
Posted 10/15/2006 6:39 AM (GMT 0)
Thank you all for your support and incouraging words. I am now on 200mg in am & 200mg @pm lots of leg pain in legs, hips, knee, and ankle. I thought maybe just flare up of old injuries but now my knee cracks and grinds when bending. Getting to sleep at night seems to be an olympic event, And not being amble to sweat properly drives me nuts confused . I wonder if these side effects are the reason for my elevated BP?. what about the supposive weight loss? I never lost any weight. Now my Doc wants me to have a Gastric Bypass sad I'm so scared but reluctantly I said yes to educate myself about the options available. I do have a Pituitary adenoma, Small & insignificant my specialist seems to say. I wonder if the Tumor, Migraines, Extremity pains & weight issues are related?
Posted 10/15/2006 7:29 AM (GMT 0)
Hi girls,
You have a lot to deal with. So, I'm curious, you went on the Topamax in May and now you are up to 200mg. per day and you are tolerating it okay (besides the frequent urination thing)?
K.
Posted 10/15/2006 1:28 PM (GMT 0)
I've been topamax for 2 years...When I first started taking it..I noticed I could not take it at night...It would cause me, not to want to sleep and then when I did...OMG, I had the worse vivid nightmares GOD gave a goose...WEll, you know what I mean, It was horrible.!!!  So I take all my dosage in AM...Works for me...Another thing...When starting out..When your tirating up your dosage....Don't go up to fast....You will have to many side effects and you will get discouraged...UP them like 25 every month or 2..Let your body slowly get use to each dose..It really makes a difference...I'm on 200mg in the am only...And it took me about 7 months or so to get to that strentgh..Matbe a little longer than that...But I was on it before and tirated to fast and the side effects was just to much and I stopped it...Slowly but surely !!  HUgs, Cindy

Posted 10/16/2006 7:00 AM (GMT 0)
I started Topamax last March after having a migrain for 7 days straight, two shots of Morphine and no relief. so my doc & Pain Mngmt doc prescribed it. Every six months or so my body becomes imune to it so they increase the dosage. I drink so much water about 8 12oz bottles per day plus gatorade, yet have very little urinary output. I cant sweat. body temp regulation, ha ha thats a joke. my Dentist said that the meds might be why my teeth hurt now & why since last year I've gotten new small cavities. something about not enough saliva to balance the mouths natural homostasis aswell as no natural rinsing. People tell me to start drinking coffee ( natural diaretic) but as we all know cafiene can trigger migraines. Another thing that I noticed was that my tolerance for alcohol is up so high I cant even get tipsy. No I do not mix meds with drinks nono . My friend had a celebration so no meds the day before or the night of and where I would usually need to stop I felt as if I was drinking water eyes go figure. So I told my boyfriend no drinking for me cause its just a waiste of $$$$.
Posted 10/16/2006 4:46 PM (GMT 0)
Hi girlsM9frmGOD,

I have been given to understand that Pituitary problems do have a bearing on Headache. I have recently been in Hospital to explore that myself. Thankfully my tests came up clear. The best person to talk to about this is a Neurologist who is a Headache Specialist!

take care

Ann
Posted 10/16/2006 10:12 PM (GMT 0)
Hello! I took Topamax 100 once daily for 8 months. Id like to tell you to stick with it but im afraid if I had I would not be here now. All of my hair fell out, I was cold all of the time. I had cuts and bruises all up and down both arms. My eyesight got so bad I couldnt drive at night.Sometimes it was a fight to just stay awake while driving. I was what you might call dumbed down. I couldnt remember some of the simplest word either while talking or writing. I had to be off the drug completely for three months before even daily use of rogaine would help me grow hair. I also have a 3% blockage of my corotid arteries in my neck that I didnt have before use. And I am not over weight nor do I have high cholesterol. In fact I lost weight from 135 to 113 and have now gone back up to 120. Im afraid I have some permanent vision loss and hair loss. If you E-Mail me or my attorny and mention Topamax We can band together to get full discloseure.


 

I have edited your post to remove email addresses for security reasons as these forums can be read publically.  I would suggest you put your email address in your profile. Please feel free to email me for any further explanation.

Post Edited By Moderator (Annuk) : 10/16/2006 4:40:26 PM (GMT-6)

Posted 10/16/2006 10:46 PM (GMT 0)
Hi Lillian,

Welcome to Healing Well. Sorry you are suffering so at the mercy of Topamax, it sounds awful!! It is a sad fact that these drugs do have the most awful side effects for some people.

What do you take now for your migraines? Please keep in touch, and let us know how you are getting on.

take care

Ann
Posted 10/16/2006 11:56 PM (GMT 0)

Hello!

I wasnt prescribed for Migraines but for cluster headaches. I suffer from 3 bulging disc in my neck with some spinal stenosis and severe degenerative disc disease. I now take trigger point injections, use lidoderm which is a lidocane patch and a strong muscel relaxant with vicodin 750 when all else fails. But at any rate the side effects that I suffered from are not even listed as a side effect on thier web site. I had to go to several doctors because they all said at first that it couldnt be any of my drugs. Even the pharmacist didnt know. My lawyer is tring to accumulate as many people as he can to join in a class action suit as opposed to me alone. On the internet I have found hunderds of others who did equally as bad on the drug as me. And remember I only took 100 mg daily. If you too are have problems or know of others please give them either my E- Mail address or my lawyers. Just Mention Me or Topamax.

Thanks for the well wishes you too!


Post Edited By Moderator (Annuk) : 10/17/2006 5:34:29 AM (GMT-6)

Posted 10/17/2006 10:39 AM (GMT 0)

Hey GirlsM9frmGOD,

Whatever you do, never stop a medication cold turkey.  Stopping many medications that fast can cause seizures, heart attacks or worse.  I took Dopamax, oops..Topamax, for quite a while.  I was up to 400mg per day and was literally a zombie.  Seriously, I had all the symptoms of brain damage and literally could not function.  To make matters worse, the drug did nothing to help my migraines.  I've been totally off the medication for a good year now, and my brain function never returned to my pre-Topamax condition.

As far as the cavities problems, many medications can give you dry mouth, which prevents the moisture in your mouth from doing its job and causes cavities.  Eight months of Depakote did it for me.  Never once did I get any warning from a doctor, or from other medical information warning of the cavity problem.  I ended up with thirteen.  That was two years and four thousand dollars ago, and I still haven't gotten the problems fixed. (Plus, I have a crappy dentist.)

You mentioned that your doctor suggested having a gastric bypass, but you didn't give any weight variables for information purposes.  Let me be the first person to tell you that being overweight has NOTHING to do with having migraines or not.  I had a bypass four years ago next month, and it had no effect on my migraines.  If you would like to discuss this further, just send me an email.

Sorry you are having so many problems, but I'm right there with you.  Keep in touch.

Leigh Ann cool

Posted 10/17/2006 3:32 PM (GMT 0)

Hey there smartcat

This is Lillian Orlando if you havent read my post then you need to and get back to me as soon as possible my e-mail is availible.

In the mean time I truly hope you feel better yeah

smartcat said...

I have been on Topamax for about 8 weeks now. Have had alot of side effects, including but not limited to; tingling in all extremities and face, lack of concentration, inability to think clearly, loss of knowledge (spelling and other knowledge), loss of patience (quick to anger), randomness of thoughts, nausea, dizziness, fuzziness in vision, lack of concentration, lack of interest (in previous hobbies), and others. I am persevering through, as I have read that it can take up to 3-6 months to really notice full effects. I am taking topamax to help with migraines, just started 50 mg am & 50 mg pm.

In some of my research, I have found that you can suffer an electrolyte imbalance which can explain many of the symptoms that many people have on topamax. My sister is also on topamax and has had many of the same symptoms, has started drinking electrolyte solutions (like the popular ones on tv). She has noticed extremely improved symptoms, increased energy, less muscle aches, nausea, etc (she was only on 25 mg). My doctor has put me on potassium tablets (1 week now) and I have already noticed a decrease in the mental capacity department problems as well as the nerve tingling. I have read several places about topamax side effects, and it seems that these side effects are treated as individual side effects and are not looked at as a possiblity of other problems (such as low electrolytes). If you experience nausea, dizziness, muscle fatigue/cramping, nerve tingling, lack of concentration, etc, try drinking electrolyte solutions for a couple of days to a week and see if your symptoms improve and if so, talk to your doctor. I am not suggesting that this will fix everyone's problems, but it has significantly made a difference in my sister's and my own life.

Posted 10/17/2006 3:36 PM (GMT 0)

Hey there ! Read your post and I hope that you read mine. If I misspell a lot of things its because I am having trouble seeing right now. Anyway read my post and get back to me as soon as you can my e-mail is available

Lillian Orlando yeah

ladyfoxe59 said...

Hi everyone - just found this board, so glad I did!

I just started Topamax 3 nights ago (tonight will be the 4th) - only 25 mg to begin with each night for the first month or so.  My neurologist said we'll see how things go with that and if we need to, add another 25 mg dose in the morning.  I've had migraines since I'm 16 (I'm 47).  They used to be erratic and caused by various factors but now that I'm in that perimenopausal stage, they have become nearly entirely hormonal and nearly always come around the 4th day of my period, lasting for several days.  I've been taking Imitrex, which usually works ok, also tried Amerge but it took too long to get into my system.  In the past I've been on practically every drug out there - Fiornel being the one which kept me most pain free for the most years but eventually it stopped working. 

After a while I began to tire of this montly nonsense.  Who wouldn't yeah

Anyway, we first tried me on a beta blocker for 2 weeks out of the month, since it didn't seem necessary to be on a medication for an entire month for something that occurs usually only one portion of the month.  That did nothing at all.

So we decided to give the Topamax a try. I keep reading about side effects and obviously at only 25mg, it would be unlikely to get any yet however for the last 3 nights I have not had a good nights sleep at all.  I suffer occassionally from restless leg syndrome and it seems to be kicking it off.  Also, while most people complain about it making them sleepy it seems to be having the opposite effect on me.  The first night I barely slept.  I also had nightmares once I did fall asleep.  The other 2 nights were not great either.

Also, it seems to be making me get up to go to the bathroom much more than usual at night.  Last night I think I was up 5 times!  5!  That alone doesn't bode well for a restful night. 

Obviously I need to talk to the doctor about this, but this is the week I get my period and I'm eager to see if the Topamax has any effect yet. 

Anyone else have these effects? 

Thanks!  Best wishes to all of you other migraine sufferers out there - it's a tough road which not a lot of people seem to have a lot of sympathy for.

Posted 10/23/2006 7:17 AM (GMT 0)
HI LEIGHANN HOW ARE YOU? THANK YOU FOR YOUR SUPPORT.

WELL I'VE BEEN OFF ALL MEDS FOR 7 DAYS, I WAS FEELING DIFFERENT AND HAVING SOME SIGNS & SYMPTOMS; SO I TOOK A PREGNANCY TAST AND WHAT DO YA KNOW? I AM PREGNANT I HAVE MY FIRST PRENATEL EXAM ON FRIDAY-27TH. I FEEL GREAT EXCEPT FOR THE MORNING SICKNESS.I NOT SURE IF THE LEG PAIN THAT I HAVE IS DUE TO STOPPING THE MEDS OR DUE TO OTHER ISSUES. I WAS TOLD LAST YEAR THAT I WASNT OVULATING ANY MORE. MY BIGGEST CONCERN IS THAT FOR THE TIME THAT I DIDNT KNOW I WAS PG, THAT MY MEDS MIGHT HAVE EFFECTED THE CHILD SO PLEASE PRAY FOR ME!

Posted 10/23/2006 8:56 AM (GMT 0)
Hi girlsM9frmGod,

Congratulations on your pregnancy!!!! Try not to worry about the meds you have taken before you found out you were pregnant, there is nothing you can do about that now except take care for the rest of the pregnancy, it's probably all fine anyway. I am really pleased for you.

I hope you don't mind me pointing out that the use of capital letters on these forums is seen as shouting. I know you are probably so pleased about the pregnancy you want to shout!!! lol. But please consider this for future posts.

take care

Ann
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