Starting Topamax for headaches
 

Since my 30 mg of amitriptyline seems to have maxed out its effectiveness at headache prevention, my neurologist is gradually moving me over to Topamax instead. I'm tapering off the elavil while I taper up the Topamax.

Anybody tried this med? Better, worse, about the same compared to amitriptyline?

He seemed optimistic about it since the Imitrex seems to help arrest the headaches when they are coming on.

My daughter (when she was 10, NO mTBI) took topamax for a year or so for migraines and had wonderful results.

Hope it works for you too!

topamax was too strong
 

My neuro tried topamax with me as well.

I had a horrible experience. I ended up going into the doctor's office, he took one look at me, put me in a wheelchair, and sentd me to the ER.

It is a very powerful drug.
I remember feeling lethargic, confused, extremely dizzy, etc. (couldn't really get out of bed)

Also it is easy to draw a blank when speaking (this is a common side effect) and the weight loss is scary. If you are thin it can be too much.

And you may have tingling in your extremities. My neuro said to drink gatorade throughout the day.

For me, it was one of those drugs that made everything worse, but you never know. Just wanted to share my experience, I hope that you have a better one:)

I tried and did nothing for me. Luckily I didn't have any terrible side effects. Start with lowest dosage possible.

For me even Imitrex didn't do much. So you have better chances may be. Ibuprofen is the only thing works some what.

My Neurologist wasn't too optimistic and was honest about it. One thing he asked is about Lexapro. I tried and not able to continue for more than few days bcuz it gave me terrible stomach pain and nausea.

I even talked to some neurologist in John Hopkins who is doing a clinical trial with Lexapro on people with TBI.

My neurologist prescribed me Topomax for a while - the stuff made me delusional and crazy. I felt much better after I stopped taking it. My family was *very* worried about my behavior while I was taking it and they were relieved once I started acting more myself after I stopped taking it. We didn't think a drug like that could cause side effects like that. But I'm very sensitive to medication.

I think it's definitely worth a try. I think most things are worth trying.

Keep in mind (and remind your Dr.) that people recovering from mTBI don't always need the typical dosage for it to work because we tend to be very sensitive to drugs.

Never heard of this drug.

Hope everything works out for you.

I have been on topamax, for a few years. It works very well for me.

I hope you have good luck with it.

Donna:grouphug::hug:

So far, I'm a few days into the transition. 20 mg of amitriptyline and 25 mg of topamax. I feel very sleepy and dizzy, similar to the way I felt when starting amitriptyline. Can't wake up. Go blank and dizzy every time I stand up.

On the bright side, no headaches. On the downside, I can't do anything that might possibly cause a headache.

With the amitriptyline, this lasted a few days and then got better. Should I expect it to improve over time with topamax as well? Or am I stuck this way?

I was on topamax for migraines a few times. You do get some weeeeird side effects. Depending on how you feel, weight loss might not be so bad, but others aren't pleasant. I stopped taking it the first time because my hair started falling out, lots of it. So, be aware that might happen, though not saying it will...that's one of the rarer side effects from my knowledge. You might find yourself not as hungry (weight loss), your hands and feet might get numb and tingly (keep hydrataed), and maybe the weirest one.....carbonated beverages will taste TOTALLY different! It's hard to explain how...metallic maybe. You'll notice it, I think that one is fairly common.

For me the drug was very helpful, and I can handle it on a low dose. Everyone is different so just keep your eye on the side effects.

I would just be hesitant if you are going to take this medication. I have been on both amitryptiline and topamax. At first the Topamax seemed to do wonders for me, and my headaches decreased substantially. However, it only worked for a short amount of time, and as they increased the dose I began experiencing the side effects. On the medication I had serious memory loss, and could not bring up words when I wanted to. You should keep a diary, if you start experiencing anything weird write down the first time it occurred (time, symptom, severity, and frequency). If it is bad immediately call your doctor.

I hope everything works out, and your headaches go away. Feel Better :)

Topamax worked well...
 

I have been on topamax for a long, long time for migraine prevention and it worked very well for me. They increased my dosage to help with trigeminal neuralgia and RSD in my face. My migraines were reduced tremendously! But now, topamax is not as effective so the neurologist is trying elavil...so I am doing the reverse as you, tapering off of topamax while going up on elavil.

I will tell you, not everyone can tolerate topamax. I have so many sensitivities, but I did ok. My neuro told me that my hands would tingle at the beginning and when the dosage was increased, and all I needed to do was eat a kiwi a day and it would take care of it. It worked! The extra potassium gets rid of the tingles. The other side effects usually go away in time, unless they are too severe. Sometimes the dosage needs to start at 25mg instead of 50mg and gradually work up from there. Some people can't tolerate more. I was up to 175mg per day.

Your sleepy feeling may also be coming from taking both meds. My neuro told me if I got too sleepy, to stop the elavil and taper down the topamax more before adding the the elavil again. Your dr may need to adjust how you are tapering/adding these two.

Good luck!!
Nanc

I'm a couple weeks in now and not so sleepy. Almost off the amitriptyline and mostly over to Topamax. So far, I think I'm having fewer headaches. Yay!!! So exciting!!! **knocking furiously on wood***

Yay for you!!! Fewer headaches is definitely exciting! I am still transitioning, so I am sleepy.

I've been on this drup for "maintenance" of headaches since August 2011 and haven't really seen any improvement since I am currently still experiencing headaches. The side effects for me were intense on this drug. They don't call this drug "dopamax" for nothing. I was warned that it would make me stupid and between the Topamax and the Zoloft, I was living in a fog. I had no emotion at all. I was very forgetful and did stupid stuff all the time.

Another side effect that many doctors don't know about is that Topamax will made the taste of soda taste funny to you after a week or two while on this drug. Soda will taste flat while on this drug.

This upside for me while on this drug was that it turned out to be an appetite suppressant. I'm normally a runner working out and running 5 days a week and due to the concussion, I've been out of running 11 months now. This drug has kept me from gaining a lot of unwanted waited. I've been told that some doctors actually prescribe this drug for weightloss but those who use for that intended purpose actually gain weight.

I didn't know aobut the hair loss. I thought I was going crazy!!!! I was losing my hair before the Topamax due to stress but lately its been coming out again but couldn't really come up with a reason. Topamax!! Thanks for posting this!

Update on Topamax switch
 

I have now completed my switch to Topamax and have been on 100 mg Topamax for a couple of weeks. I am having fewer migraines, and when I do feel one coming on I'm usually able to shut it down with Imitrex. I haven't had a really bad headache in quite a while. To be fair, I'm also keeping my days generally more calm and quiet, too.

I am having more trouble sleeping again since being off the amitriptyline, though. I wake up pretty consistently 2 times a night, often around 1-2 and 3-4.

On the bright side, I have quit having the crazy vivid dreams.

Oh, and now I'm waking up with headaches more often. But they seem to be more tension-like than migraine-like, and they are just as likely to go away or stay the same as the day goes on, rather than getting worse.

Wait for a week or two after you're up to your full dose, and then if the side effects are still bad tell your doctor and consider switching. If they're bad you don't have to live with that medication. I had a bad experience with nortriptyline similar to what you're experiencing now and I couldn't do anything until I got off of it. I know I had side effects every time they raised the topamax (I'm currently going off it), but your side effects could be amitriptyline withdrawal too. I also have memory issues that people are talking about and loss of appetite. My first doctor told me that those side effects were rare but my current doctor said that people who are on topamax for post-concussion syndrome experience more of the side effects than seizure patients (who also take the drug).

I'd say my experience with this drug was pretty similar. I could only take it for two weeks before the spinning got so bad I was having a hard time getting around my house.

I've been on a very low dose of topomax for about 6 weeks now, 15 mgs 2x a day. I've not noticed a dramatic improvement, but also not any bad side effects at this dose. We're starting so low because I've reacted poorly to every other drug prescribed. I expect the dosage will increase at my next appointment.

One thing I have noticed, is I haven't woken up crying at night because of my headaches for a couple weeks. They still wake me up, I'm just not crying. That IS an improvement, really.

I'm hopeful that a slight increase will bring more relief and not too many other problems.

Starr

reply....
 

Eowyn... Why isnt the doc increasing your elavil? I just went up on mine but have split the pills at first to see. I do know it makes me more tired to wake but has kept me without waking in the wee hours. I have found I need to really shake it off in the morning though.

The doctor did increase my elavil, but it made me too dizzy at the higher dose. I actually fell from being so dizzy. The topamax takes care of the headache but doesn't make me groggy or dizzy like the elavil did.