Newbie considering Topamax, any other suggestions/ advice?

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sb129
New Member


Date Joined May 2008
Total Posts : 4
   Posted 5/3/2008 4:38 AM (GMT -7)   
Hi,
I am a 30 year old dentist who has suffered from migraine and headaches on and off for most of my life.
My job doesn't help, as neck and upper back tension is definitely one of my triggers.

Over the last few months I have been having bad headaches daily for a week at a time, around the time of my period, culminating in bad migraines (vomiting etc) at the end of the week (usually at the weekend or after work so they ruin myu "free time")
I have never noticed headaches in relation to my periods before, but I have got a very stressful busy job right now and have alot going on at home too so maybe the combination of things isn't helping. I have tried osteopathy, acupuncture, beta blockers etc, but I can have periods of time where I have no pain, however right now isn't one of them!

I was getting dependent on codeine based meds, and think they were giving me rebounds so I went to see a migraine specialist who recommended voltarol and making sure I kept my blood sugar levels up by eating regularly. She also advised getting enough sleep and massage for my tension. I was a little disappointed because most of this advice is common sense to me and I try to do it as much as possible anyway, however my headaches are starting to take over my life. I worry if I don't have access to meds, and today is a beautiful day and I have spent most of it throwing up while my poor fiance is waiting for me to feel better so we can go do something. I think they might get better once all the stressors are gone (am leaving this job in July) but I have to get through this and there will be another job eventually.

I went to my GP yesterday who said that the advice from the migraine clinic wasn't very helpful and he suggested
I try topamax.

I have read some of the other forums on here, and think it could help, although I am worried about potential sleeping problems as I have trouble sleeping anyway, concentration, as my job requires a high level of concentration, and I want to get pregnant next year, so I worry that my migraines will come back if i have to stop taking anything, and also worry about not being able to take anything while I am pregnant.

I am desperate for some support and advice please!

sb129
New Member


Date Joined May 2008
Total Posts : 4
   Posted 5/3/2008 4:40 AM (GMT -7)   
PS- I have also suffered from depression in the past so i am worried that topamax may induce that again.

dito
New Member


Date Joined Apr 2008
Total Posts : 10
   Posted 5/4/2008 8:49 AM (GMT -7)   

Hi. Sorry to hear of your struggles.

Many people have tried topamax, but read up on it very well-please. And don't read info only from the pharmaceutical company selling it but read about reports of side effects.

There are many variable side effects that people attribute to this med, some minor and some awful .A lot of these type of meds indeed do aggrevate people with depression so be very careful.

My experience with this med was awful and couldn't tolerate even the small doses. But others have had success with it.

Best of luck.

 

 


monthofpain
Regular Member


Date Joined Mar 2008
Total Posts : 35
   Posted 5/4/2008 7:17 PM (GMT -7)   

Like the person before said it is good for some but not others.  I personally think it works very well but for me the side effects made me stop taking it.  I was getting vertigo where I couldn't stand up with out getting nausea and extreme dizzyness.  But, I have a friend who has been taking it for years and has had no problems.  In fact the first thing she told me when I started taking it was how great it was.  The only thing you can do is try it if you need to you can always stop taking it, but like you said be careful with you depression. 

With the concern being inducing your depression you should talk to your doctor about antidepressants instead of topamax.  My neurologist mentioned this as the next step for my migraines and it is used with patients who have never had depression before, like me.  When my doctor first mentioned this, I just thought to my self I am not depressed and will not take them.  But as a phsychology student I started to get curious and talked to my psych. professor.  He told me it was very common for migraine relief.  I do not know how well thye work but this is an idea to consider, I am now considering it for my self. 


sb129
New Member


Date Joined May 2008
Total Posts : 4
   Posted 5/6/2008 10:58 AM (GMT -7)   
Thanks for your replies.

I have read about amytriptyline being good for migraine prevention, and thats an antidepressant, however my GP discouraged me from considering that as he said it too has nasty side effects.

Come to think of it, while I was on prozac for my depression, I didn't have a single migraine.

I have been doing some further reading, and some papers suggest that there is a link between serotonin levels and migraine, so it would make sense that SSRI antidepressants could contribute to reducing migraine.

In light of all the reading, I am going to self medicate with 5 HTP and to boost my serotonin levels (and help me get that sleep which eludes me, which will also boost my serotonin. I have also read melatonin is good for migraine for similar reasons.
I am also going to try a preventative regimen of vitamin B2/magnesium/feverfew/butterbur at the levels recommended by a UK migraine website to see if this helps.


I am not quite desperate enough to reach for the topamax just yet- if this self researched method fails, then perhaps I will reconsider it.

Thanks again. :)

monthofpain
Regular Member


Date Joined Mar 2008
Total Posts : 35
   Posted 5/6/2008 9:17 PM (GMT -7)   
Vitamin B2 and Magnesium is what I am taking now along with blood pressure medication. Between all these something is working, my problem is I started them all at the same time and don't know which is helping. But I do find that if I don't take my night time mediacations which are just the vitamins then the next day I get really bad headaches. With the vitamin B2 my doctor has me taking 400mg a day and Magnesium 800 mg.

Good luck, and in time you will find something that will work.

sb129
New Member


Date Joined May 2008
Total Posts : 4
   Posted 5/6/2008 11:25 PM (GMT -7)   
Hey, thats reassuring! Thanks, glad to hear you have found something that is working for you.

I am going to check out today to see if you can get B2 and Mg on prescription here in the UK, because alot of these supplements are expensive. (800mg of Mg is alot, but I read that you need to take at least 400mg for it to be effective against migraines).
Not that I mind paying for stuff, I would rather do that than be in pain, but I do pay my national health insurance, so I should try to utilise that as much as possible!

Thanks again, and all the best to you too.

dito
New Member


Date Joined Apr 2008
Total Posts : 10
   Posted 5/9/2008 7:44 AM (GMT -7)   
sb129
hi! hope you find something that will help but like the other respondant said, be careful trying too new meds at once because you won't be able to tell which one is
working and which is actually making you worse.
Best of luck.

chasecadet
New Member


Date Joined Sep 2007
Total Posts : 7
   Posted 5/12/2008 5:38 AM (GMT -7)   
I took topamax a few times for my migraines.  I just came off it again after using it for about 8 months.  It def. worked for me by giving me 2week long intervals w/no migraines followed by 5 days of migraines.  It was a predictable pattern which I liked.  Anyway, I had to stop taking it because of the side effects.  I did start taking it at a very low dose and worked my way up but it was still too much.  I was extrememly exhausted all the time.  Even if I slept for 10 hrs at night it felt like I only slept 3.  I couldn't concentrate and felt drugged up all the time.  And I had no libido whatsoever.  It had caused so much problems w/my romantic relationship that I had to stop or the relationship would come to an end.  Only of it's virtues was that it kept my weight under control.  But, now that I'm off of it I have gained all the weight back. 

dm24
New Member


Date Joined May 2008
Total Posts : 1
   Posted 5/12/2008 6:32 PM (GMT -7)   
I have had migraines for over 25 years.  Last year my doc recommended Topamax.  For a year i took it and seemed to doing fine, but, BIG BUT, about 5 months after I started taking it, I noticed that my hair was coming out in clumps.  I researched whether hair loss was a side effect, but it is not listed as one by the drug company. After a year, and numerous trips to my primary care doc and dermatologist, I went off the Topamex.  My hair started to grow back a few months later.  Now, a year later, I finally have hair on my head, and not on the shower floor. 

CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 5/16/2008 2:39 PM (GMT -7)   
OMG!!!  Run away from the Topamax has fast a you can.  The side effects are horrible and permanent.  Durning the time I was taking Topamax (also know as Dopamax), it totally destroyed all
sorts of brain function.  My shotterm memory is fried, I can't come up the the vocabular that I want to use normally.  I can't spell any more.  I can't concentrate on important situations, I can't even carry on a decent conversation, and my writing skills are rotten.  I can't spell jack anymore.  This is making me nuts, but I'd rather be this way that too be back on Topamax.  By the way, the Topamax damage never goes away.  I don't mean to be a downer, but I just don't want to have other people suffer the same problems I did.  In the end, it's your decision.
 
Best of Luck!!!
Cranky1 skull

Basic info:
  • On Disability for: Chronic Migraines, serious Back and Knee problems (will need surgery eventually), moderate Depression, Anxiety/Panic disorder, TMJ 
  • Divorced, 42, no children
  • Surgeries: Gastric Bypass, Gallbladder Removed (followed by a week in the hospital for a Blood Clot), Impacted Kidney Stone Removed, Broken Ankle, Major Dental work(four molars pulled, multiple cavities, root canals) 
  • Current Meds: Lexapro, Klonopin, Wellbutrin, Stadol Nasal Spray, Lortab, Trazadone, Buspar, Nexium, Tramadol, Phenergan, PROHIBITED FROM ALL NSAIDS
  • Current Problem: Internal Bleeding, possible ulcer in location of Gastric Bypass
 
"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett
 
 


nsparky1
New Member


Date Joined Apr 2008
Total Posts : 6
   Posted 5/19/2008 8:54 PM (GMT -7)   
i've been on topamx on and off for a number of years, and for me it worked for about 1 yr or so, lost weight from it about 5 or so lbs a month (good bc of the depokote weight gain) didn't have any horrible side effects like the sleep problems or hair falling out, it did work, seemed that my body got use to this med and had to be switched back to depokote er after one yr.....now nothing is working (just got put on beta blockers and a tricylic will be introduced shortly)....
do research of this drug, and take with your doc,,,, let him know your concerns.... for some it does work, for others for awhile, and yet for some, not at all.....good luck to you!

nicoleg1313
New Member


Date Joined May 2008
Total Posts : 3
   Posted 5/28/2008 7:28 PM (GMT -7)   
I was on Topamax at 100 mg a day and sometimes it worked and other times it didn't. My advice is to at least try it.
Good luck!

nsgrimm
Regular Member


Date Joined Apr 2008
Total Posts : 29
   Posted 6/13/2008 7:38 PM (GMT -7)   
I have been on Topamax 50 mg daily for a little over a year.  I really haven't noticed any side effects besides soda tasting flat at first, I suppose I'm just used to it now so it doesn't taste different at all now.  I love it personally but everyone is different.  It was a gift from God to me.  I still have some migranes but they are very few and far between.  I guess I was a lucky one that it treated w/no side effects.  Good luck!

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 6/17/2008 5:25 PM (GMT -7)   
Hi, I'm a long time migraneur; been diagnosed with 5 different types of migraines. I was on Topamax when they first tried it; it was a wonder drug for me at first; unfortunately I have respiratory issues which made it a med that I couldn't use.

Migraines meds, both preventatives and abortives work differently for different people and the responses you receive will reflect those differences. I happen to be one of those that has all kinds of reactions and I'm difficult to treat, getting to a GREAT Dr. is your first step. It sounds like the "migraine" specialist you went to was a specialist in name only and that is of no value at all. Your GP sounds as if they have a better handle on it and I would start there.

MHNI in Ann Arbor, MI, is a great place to go; they do tons of research and can treat the most difficult of people...me included; they see people from all over the world. They have a web site (just add the .com) to see it. I've known many with hormonal migraines who have been very successfully treated..the key is finding the cause, not just treating the symptoms. Good luck!!
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