Headaches, face & head pressure & jaw pain getting BAD again. Need to find something to help. I've researched topamax and it looks like a possibility to use.
Anyone have information to share? Do you see any problems w/medication listed below?
Plan on calling dr. soon-just trying to find some possibilities.
Thanks for help, wantabe
Posted by feelfit (Member # 12770) on :
Topamax is used off label for migraines. I used it for awhile. Didn't notice any difference either way.
Nothing yet to help my head pressure/headaches.
Doesn't mean that it won't have some benefit for you though.
High dose amoxicillin *seems* to be touching some head pressure and headache.....but it is too early to tell yet. Been on it for about a month and have had less headache and head pressure since this past Sunday.
BJK and Art Dourghty (sp) have lost their daily headaches on high dose amoxicillin...might be something else to consider.
Good luck to you as this is very debilitating, I have had it every day for over one year.
Feelfit
Posted by ping (Member # 6974) on :
wantabe, be careful with the Topo. At the level my doc rx'd it, my whole body tingled and extremeties we often quite numb. I finally stopped taking it. You might have a different experience and if you think it might be of use, go for it.
ping "We are more than containers for Lyme"
Posted by pab (Member # 904) on :
My son & I tried Topamax and it didn't work for us. I've read many posts (here & other boards) about it being a great med. Everyone is different. A lot of people call it "Dopamax" because of the side effects.
My sons have psuedo-tumor cerebri (intracranial hypertension). They tried Diamox and it didn't help them. I use Diamox when I get the eye pain/pressure and it works for me.
Someone posted a couple of meds that worked for them that I hadn't heard of. It's a fairly recent post and it might have been Melanie's post.
Posted by poohbear74 (Member # 18766) on :
I use it for headaches 75mgs mild side effects not as bad as i was told .
I still have my head pain.. but the pain on my right side which was your daily headache is gone
But as far as the ice pick on the other side still there...
The best was the weight loss 20lbs in 2 m so not to much of a waste. good luck!
Posted by wantabe (Member # 14703) on :
Thanks for all your comments. What else have you tried? Just wanting to research before I talk with my LLMD.
I was on Imatrex, Tramadol & hydrocodine (sp?) before dx- LLMD said no way to these but I'm still taking Nortriptyline at bed time.
Had the pressure/headaches under control when I was on ivs this summer. Guess I'm not getting enough good stuff into my brain at this point...
---just rambling to try to understand this...
Posted by pab (Member # 904) on :
quote:Originally posted by pab: My son & I tried Topamax and it didn't work for us. I've read many posts (here & other boards) about it being a great med. Everyone is different. A lot of people call it "Dopamax" because of the side effects.
My sons have psuedo-tumor cerebri (intracranial hypertension). They tried Diamox and it didn't help them. I use Diamox when I get the eye pain/pressure and it works for me.
Someone posted a couple of meds that worked for them that I hadn't heard of. It's a fairly recent post and it might have been Melanie's post.
I found the post. Melanie Reber used Methazolamide or Neptazane.
Posted by poohbear74 (Member # 18766) on :
I am taking topamax , tegradol (stay away from this i am getting off of it i feel like CRAP) and of course pain meds my life line i have headaches /sharp pains in front and back of my head
I see my neuro on tues and I am sure he will give me a new drug of choice.
good luck. I KNOW WHAT YOU ARE FEELING
I am having trouble getting my doc to relate it ti Lyme.any other question I will be more then happy to help.
Posted by petal (Member # 18066) on :
Hi wantabe!
I have been using topomax for migraine control for the past three or four years.
I have definately noticed an improvement in the frequency of my migraines, with no noticable side effects. Instead of getting 2-3 a week, I get one or two a month. Sometimes none.
As with any medication, what works for one may not work for another. For me, this was a very effective treatment.