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Discussion:
Topamax dose
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I have been working with my neurologist to control my headaches since my second vp shunt revision. He believes I'm having migraines and nerve pain. I've tried amitriptyline up to 150mg and now we have started Topamax. I started at 25 mg at night for 3 days, then 25 mg morning and night for 3 days. I'm now on 25 mg in the morning and 50 mg at night. In 3 days I'll be on my recommended dose of 50 mg twice a day. I'm noticing I'm having similar side effects as diamox like the tingling. I am also having some of the dopey feeling, but not as bad as I anticipated. Anybody have any advice? Has anyone had success with Topamax for migraines?
Thank you,
Nicole
Posted on 02/11/13, 04:49 pm
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Reply #1 - 02/12/13  4:08am
" I am also having terrible migraines. Most days I can't read or write much. I'm seeing a headache specialist/neurologist and trying Topomax but she has been increasing my dosage much slower. I'm at 100 mg now but I started in mid December. I have not had any luck yet. Topomax does have some similar dehydrating effects like Diamox, so I think orange juice helps the tingling and I think if you go up to quickly you are more prone to the dopey feelings. I was already having problems with memory and such so I have not noticed much difference. I have had two hospital stays trying to break the migraine cycle that have not worked. The traditional abortive migraine meds have not worked. I have a shunt and a stent. My pressure seems to be pretty much under control, although there are days I can tell it is elevated. My Dr. Said the surgeries themselves can cause the migraines to start, or the illness may have started the whole process. The illness may have also triggered what is called daily persistent headache. Ugh. I did not have headaches before this whole mess started but I'm in bad shape now. My daily functioning is severely limited. I wish you luck. I see my Dr. again in a couple weeks and I imagine my dose will increase again.
Amy "
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Reply #2 - 02/12/13  5:34pm
" Wow Amy we sound kind of similar. I was misdiagnosed with migraines for months before my IH/PTC diagnosis 2 years ago. I got my vp shunt in April 2012 and was headache free for almost 6 months. I felt great, with the occasional headache that was typically weather related. In October I had two vp revisions 5 days apart and I've been struggling with headaches ever since. My headaches like yours have made my daily functioning severely limited. I have not been able to return to work as a special education teacher since October. I hope we are able to find some relief with topamax. I used to drink coconut water with diamox to help with the tingling so I'm going to start that with the topamax.
Good Luck!
Nicole "
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Reply #3 - 02/12/13  9:25pm
" I have an LP shunt that was put in June 2012. I felt completely normal afterward. My body felt like it had been run over, but my head felt great. Then in August the tubing pulled out of my abdomen and I had to have it replaced. The fluid had backed up into a pocket on my back and in my abdomen. The headaches also returned. After that surgery again I felt good. This time only for about 4 or 5 weeks. I started getting terrible headaches. I was sure my pressure had returned but it was checked in October and was only 17. I was hospitalized mid December to try to stop the headache. Another ct scan showed my previously narrowed right venous sinus was now severely compressed. I had stent surgery December 27. I felt a huge relief of pressure from the back of my head. I was doing fairly well but 4 days after the surgery had a crippling headache attack that happened suddenly. I waited it out a few days at home but then my pupils were different sizes, and fearing a brain bleed I went back to the hospital. They kept me a week and never fully got rid of the headache. My eyes are fine and there is no swelling or vision loss. But the migraine affects my vision and I have not been driving.
I am sorry you are dealing with this as well and have not returned to work. Have you also tried the usual abortive migraine medications? Imetrex and those types, and did they help? The tingling has not been very bad for me but when the headache is worse, like an 8, some of my limbs and one half of my face start to go numb and tingle. Coconut water is a good idea. I will give that a try as well.
Amy "
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Reply #4 - 02/12/13  9:47pm
" I did try Imitrex, but didn't have any luck. My neurologist just prescribed Zomig, but I'm waiting for my pharmacy to get it. The past two days I definitely feel "better" (I say that as I knock on wood). I live in Massachusetts and we had a blizzard this past weekend, and I know my pressure was up, it felt like my head was going to explode. I've noticed my headaches are a lot worse when the barometric pressure drops.
One of the things that was making me and my husband nervous was my right pupil kept dilating when I was in pain. A few doctors dismissed it, but my neuro opthalmologist felt that it was a sign of migraine. I've also read that it can be a sign of increased intracranial pressure.
I guess we can just keep hoping for pain free days!
Nicole "
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Reply #5 - 02/13/13  10:34pm
" I am also bad with storms, and with no storm, and during ovulation, and for no rhyme or reason. But that blizzard was a doozy. I'm sure everyone along the coast had a heck of a time. I also have had the right pupil dilate and not react like the left. It is freaky. It has happened during the worst of the migraine so I think it is that and not pressure. I do know there are times when the pressure goes up, I can hear the heart beat in my ear, but it is intermittent. I have stated keeping a migraine pain diary as my doctor suggested and maybe I can piece some things together. If you have a smart phone there are quite a few apps available. There is also a migraine page on DS that I just joined but I haven't jumped in yet. I have a couple of friends that get them but they just pop an Imitrex and take a nap and it goes away. :( I will talk to them some more about it anyway. I see my headache dr again the 25th.
Amy "

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