Sunday, May 27, 2012

Topamax doesn't give me brain fog.

By dianacwolf Friday, August 10, 2007

Hi.  I was just reading the postings regarding Topamax, and I wanted to share my own experiences.

 

I've been on (and off) Topamax for several years.

 

I've had migraines for 20 years, starting when I was 18.  I get combination migraine/muscle-tension headaches, with extreme sensivity to sound.  I was diagnosed with fibromyalgia after the birth of my son.  My headaches are always worst in the mornings, and accompanied with back/neck/shoulder pain and stiffness.  Stretching and exercise helps.  (I stretch in the mornings in a hot shower.  Exercise in the late afternoons when I'm feeling better.)

 

Topamax is one of the few migraine medications that has ever worked for me.  Elavil made me fat and dopey.  Imitrex made me queasy and gaveme a huge head rush.  (If I wanted to feel like that, I would have started drinkin'!)  Cymbalta was the med-from-hell went it came to withdrawal symptoms.

But, Topamax turned out to be the winner.  I was as surprised as anyone.  Before I take any drug my doctor recommends, even a sample pack, I spend hours researching it on the Internet.  The research on Topamax was downright scary.  The side effects were intimidating.  Word cognition difficulties.  Tingling in the hands and feet.  And, a whole host of other unpleasantness.

But, it was also the first medication I'd seen that had a "positive" side effect... Weight loss.  Yes, the average person on Topamax loses something like 3-10% of their body weight. 

Well, that only seemed fair since every other med I'd ever taken for migraines or fibromyalgia made me GAIN weight.

 

So, I will admit I was a shallow enough individual that the glimmer of hope of losing weight was enough to push me over the edge to give this particular drug a try, and hope that it also helped my headaches.  Yes, I was scared of the "brain fog," but I was willing to give it a try.

 

I'd done my homework, so I knew the first couple of weeks would be the worst.  It was.  I noticed all the symptoms I'd expected.  The tingling in my hands and feet.  I did feel a bit down, but certainly not enough to want to commit suicide.  I did notice feeling a bit foggy, but nothing I couldn't compensate for.  It was just like having to think a bit harder because you are tired, or because you are distracted by something else.  Over the course of four weeks, I titrated up from 25, to 50, to 75, and then to 100 mg.

 

Once I'd been on 100 mg. for a while, I noticed that most of the side effects subsided.  I very rarely had the tingling in my hands and feet.  When I did, I knew it was from the Topamax, and just ignored it, and didn't think I was having a stroke or something.

 

And, my headaches did get better.  Not overnight.  But, gradually I noticed it was easier to get out of bed in the morning.  Instead of needing two Ultram in the morning, I needed only one.  And, then eventually, I could get by on just two Tylenol and two Ibuprofen in the mornings, (and sometimes a few Sudafed and a cup of coffee thrown in for good measure.)  Still this was a big improvement over the morning headaches of before.

9/29/09 11:38am

Thank you Diana!  I know it's now 2 years after you wrote your blog about your trials with Topamax, but your story is very relevant to me.  I too have Fibromyalgia and have suffered from migraines & tension headaches for years (I just turned 60 & have had migraines since my early 30's).  After trying many drugs and combinations of drugs over the years, I am now taking 50 mg topamax at night and 25 in the a.m.  This seems to be the best drug for me and I'm having good results, but I'm not sure I can increase the dosage yet without being really dopey! I am definitely having the brain fog -- everyone my age starts having problems retrieving words, but I also notice a general fogginess, a lack of concentration, a harder time connecting thoughts & numbers, a need to re-read newspaper articles to make sure I've really comprehended what I've been reading.  I occasionally have the tingling too but find that my stretching exercises and drinking plenty of water helps -- the multi vitamins help too. 

 

The other problem I have is just a lack of energy.  Maybe allergies are dragging me down but I hate not being able to exercise at my peak.  At least I can exercise without getting a migraine which was always a problem before the Topamax!  I really am thankful for being able to read about your trials of going off the drug and then back on to determine the side-effects & the degree of migraine prevention!  You have saved me from being tempted to try that whole regimen!!  I'm just going to stick this out (it's only been 2 months so far).  Thanks again for a great article.

 

 

Anonymous
Diana
9/29/09 1:11pm

Hi Maryland-

 

I am so glad you found something that worked for your migraines!

 

I am still on Topamax two years later.  I actually had to go on a higher dose, because my migraines got worse.

 

I take my dose all at night, (yes, this is different than what the package directions say.  Most people divide the dose between morning and evening.)

 

However, my doctor had said taking it all at night would eliminate the drowsiness during the day.  This has been a huge help to me, and it actually helps me sleep!  That has helped my fibromyalgia a little!  (an unexpected side benefit. hey, sleeping a little better is always nice.)

 

It's not a miracle drug, by any means. I don't think such a thing exists.  But, for me, it has made living with migraines more tolerable.  So, whatever gets you through the day without those migraines, right?

 

Cheers,

Diana

9/30/09 11:31am

Thanks Diana,

I'm going to the doctor next week for a re-check to talk about increasing the dosage for more effectiveness.  I will certainly ask about taking all the dosage at night rather than dividing it.  When I tried Topamax several years ago with a different doctor, that is what they prescribed so it must not be too radical a treatment! If it will help reduce daytime drowsiness then it's really worth trying.

 

I've discovered the same thing through many years of trial and error:  there is NO miracle drug when you suffer from migraines.  But the Topamax definitely is up there with being one of the best and it has greatly reduced my dependency on popping other pain pills -- and if it can also really help us sleep then it probably does help with some of the problems of fibro too.

 

Best of luck.

 

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By dianacwolf— Last Modified: 03/05/12, First Published: 08/10/07