Well, this is the new drug the specialist wants me to try... I'm just not sure about this, as it seems every drug he gives me for my head has had bad reactions, and I've had to stop...

Anyone else try Topamax? I've read it makes you sleepy and fuzzy... not something I need MORE of to be honest.

Camyam,

I was on Amitriptyline from 3/2011 - 3/2012, started with 50mg twice daily and increased the dosing to a max of 200 mg twice daily for daily headaches from my injury. My headaches went from 15+/10 on a 10/10 scale to 7/10 minimally during that time.

My Neurologist retired and I was referred to another Neurologist. He weaned me from Amitripylline to Topamax. We began with 50 mg twice daily, and have now reached 200 mg twice daily since 4/2012 to now. My headaches daily have gone from the 15+/10 on that 10/10 scale to 2/10 scale or less , but I still have a noticeable presence that my headache is there, just at the brink, even maybe a 1/10 minimally daily - but omg it is so much nicer to feel that much clearer - headache free so to speak.

I used to get about 1 to 2 acute headaches also during the day besides my daily chronic headache - now I have had maybe 1 or 2 since I started this 200 mg twice daily dosing 2 weeks ago.

I know there are side effects from Topamax - I have only had the dry mouth; occasional funny soft drink taste; of course like all these meds - E.D.:
---One day, maybe all these docs will acknowledge that these meds are the causation and not the age of some of us - just because I was injured in my 60's and am in my 60's is not the root cause, since there was no problem until I began those damnable meds.

There is also the occasional dry eye sensation.

Many side effects are tolerable to me.

I've been an Insomniac since the injury , way before the introduction of these or any meds, so I can't blame them for that.

Camyam, I know many haven't gotten along well with Topamax, but this is my experience with it. I'm very wary of taking drugs and have been extremely drug sensitive since my injury.

When I first went to the rehab clinic lasat summer, my physiatrist suggested topamax, but in a very small dose. Generally the smallest dose is 25mg, BUT it does come in 15 mg, so we started with 15 mgs at bedtime for a week. Then we added 15mgs in the morning as well. After a month or two, we added another 15mgs at bedtime, after a week, added another 15mgs in the morning.

We've been slowly increasing like that since... I'm now at 100 mgs at bedtime and 50mgs in the morning (eventually the morning dose will match the bedtime dose, but now that my dose is getting higher we are going extra slowly.)

Honestly, the only side effects I've noticed are:
- some food tastes like crap. Mostly processed foods that really I shouldn't be eating anyhow. Like pop, which I didn't drink before anyhow, even a sip now, tastes like poison. Really not a bad thing. Its a drug that sometimes gets used for weight loss and I'm sure this is how it works is by making food taste bad... also seems to decrease my appetite a bit. I've not *lost* weight on it, but I've also not gained a pound in the last year since my injury, partly due to the topamax.

- a slight bit of hair loss. Nothing major, no bald spots, I started out with extremely thick hair that had to be thinned with every hair cut... now there's a lot less thinning to do... but the hair dresser still has to thin it a bit in spots, so its not much hair loss... I just notice a bit extra in the brush now and then.

I've not noticed being more tired, but I think that's due to the very careful and slow increase program we did with the drug. I've also not noticed being more fuzzy, but again with the slow increase, maybe that's been minimized or maybe I'm just so fuzzy to begin with??

As for improvements, its not been a wonder drug for my headaches, but there have been improvements. I used to wake up crying from head pain at night. I sometimes will still wake up from head pain, but less often and not crying anymore and I can usually just go back to sleep.

As with all the drugs, you'll never know how it affects YOU, until YOU take it... you can read all the different stories, but it could still be amazing for you or absolutely awful or somewhere in between.

In spite of my aversion to medication, at some point, I decided that I had to start giving medications a fair try (a month or more trial) to see if they would work for me, otherwise, maybe I was missing out on something that would work. I was also starting to worry about being a non compliant patient and having the docs at the brain injury clinic just giving up on me since I was refusing all their suggestions.

I'm lucky to be a patient there, most don't get in and I figure I better at least be trying their ideas or I should leave the program and make room for someone who is willing to try.

Good luck to you, I hope you find something that gives you some relief that is tolerable side effect wise. I figure nothing will be perfect, but as long as its tolerable, maybe its a win.

Starr

I've been a Topomax user since January 2013 and i can say that it does help with the headaches.

Side effects can vary from person to person. At the beginning, i experienced slight photosensitivity, slight hair loss and sleepiness. My adjustment period was taking the lowest dosage (25mg) at night for a couple of weeks and then up it to 50mg which is still a very tiny dosage so i'm very surprised and happy that i'm feeling improvements with that amount.

I'd recommend you not to be scared about any potential side effects. They usually go away after a couple of weeks and you won't notice them anymore. Topomax is a good treatment and it might help you.

Just to reiterate, topamax DOES come in 15mgs capsules, topamax sprinkles, it's called and not all docs know about it, but it's good for those of us that are sensitive to meds and need to start slow and increase slowly.
Or at least this is true in Canada.
Starr

I do not like to take medicine, but my neurologist said that I needed to get my headaches under control, otherwise I could end up with some sort of chronic pain condition. So I ended up taking Topamax from April through Dec 2012. Started at 25mg and went up to 50mg. It helped with the headaches and I was able to wean off easily. The main side effects I recall are a bit of hair loss (lots of it on my hair brush) and maybe a slight bit of memory fuzziness.

My husband has been on topomax for 5 days now and his hips are paralyzed. He can't bend, he can't lift his legs, he can't bend his knees. He is able to walk, but he looks like a robot when he moves. Has anyone experienced this before? He has been taking 50 mg of Topmax for 5 days now and it is today when this sympton started, so he is going to stop. Any information someone can provide would be greatly appreciated. Thanks

That symptoms is not a listed side-effect. Numbness and tingling in the legs is a common side effect. I suggest you call the pharmacist and ask them. Pharmacists should be available today if you used a major chain pharmacy.

I have been on 200 mg of Topamax at bedtime for over a year with no issues.
we are adding 25 mg a week now until I am up to 300 mg. So far so good. I do
once in a while get the tingle in my fingers and toes, but that is rare. I hope that helps.

Mark is right, all medicines react differently for each person. I am resistant to any meds they just dont work for me. Call your pharmacy or doctor and if he is having that bad of a reaction maybe the ER is an option.