New Daily Persistent Headache Support Group

Hey everyone

So glad i managed to find a support group with others in the same boat as me. I'm from the UK and there's not much support over here so thought I would see what kind of treatments everyone has been given or tried from other doctors.

I am a 26 year old male from London and was diasgnosed with NDPH 4 months ago and have had a permanent headache now for around 8 months. I am taking Topomax - 25mg twice a day. Recently moved up to 25mg 3 times a day, but had some really bad side effects so moved back down. I was getting shaking all over my body and pains in my legs and arms. Anyone else have these bad side effects? Any other drugs or treatments that people are on that seem to be working?

I have also been getting some other probelems with my continuous headaches. I have had some stomach problems - mainly acid reflux. Has this happened in anyone else as well?

Well just thought I would say hello to everyone, and ask a few questions!

Hello MartinBradley,

Welcome to the support group! I'm sorry to hear of your continuous headache but you're in the right place for help, ideas and friendships.

My husband was on topomax a few times and he had many side effects. I do not recall the shakes however. I believe sometimes the longer you are on Topamax, the less the side effects will be, so perhaps in a month or so you can try increasing your doseage again. My husband was able to get up to 100mgs but anything higher than that, the side effects outweighed the benefits.

Currently he's on Doxycycline and Singulair but it isn't making a noticible difference for him (yet). Nothing he's tried has had long lasting relief. I hope the Topamax starts helping you!

Hi Martin

Welcome to the forum

I'm also from London, whereas most people here on MDJ seem to be from the US.

My headache's 1st birthday was on Saturday. Was only diagnosed in March though.

I take Triptanes as and when, and Ibuprofen. Triptanes work really well (you can get Sumatriptan OTC from Boots as far as I know), and Ibuprofen and Paracetamol are good short term set-ups. Ibuprofen is an anti-inflammatory and Paracetamol is a pain killer. Paracetamol doesn't work for me, Ibprofen does. It would probably be different with you though.

Sorry, but I'm not sure about all your (nasty) side effects. I tailor my meds so I don't get side effects except pain relief.

The thing is to try to find a stable medicine regime that you feel comfortable with. Talk to your GP if they are involved, or your neurologist or whoever is managing this with you.

Hope you're feeling better soon!

elcollins95 (feel free to PM with any other questions)

Post edited by: elcollins95, at: 11/07/2009 08:20 AM

Hi Martin,

I'm from Australia, so also not from the US. I've been on Topomax twice. The first time I was up to 300mg/day. This time I am on about 100 or 75mg/day. It is true that the longer you are on it the more used to the side-effects you get. I think it's one of those drugs though that the lowest dose you can get away with is best.

I have tried about 20 drugs so far. It really is trial and error. I have just started on Cymbalta and Seroquel with my topomax so will see how that goes.

Thanks a lot all for making me feel welcome. Sounds like the Topomax will get better in time which makes me feel better. Will stick with it for the time being and hope things improve.

Thanks for the advice as well - have only seen my neurologist twice (once for an assessment, and once after the MRI to be told I had this). Might see if my GP will refer me again and see if I can get anything to go with the Topomax as well. Won't try tailoring my own!

My son was on 200mg of topamax. He shook all the time. Was not a good drug for him.

Hi MartinBradley, I didn't shake on Topamax though I had the pins and needles at every dose increase as well as being tired and now that I have been on it for a long time I have stupid moments. I am at 150mgs (of the generic which for some reason doesn't seem as strong to me). My side effects always decreased after a week or so on the new dose, though it may or may not be a good med for you (some people simply don't tolerate it well).

There are tons and tons of meds out there that have helped people. I take Seroquel 100mgs (I don't know if it has a different name in the UK) and it works the best of the things I have tried so far for me. Here is a link to a thread where we have a running list of things that have helped at least one person. http://www.mdjunction.com/forums/ndph-support-forums/ medicine-treatments/96227-what-has-helped-you-part-2

Thanks all for sharing your experiences with Topamax with me. Think I will stay at this lower dose for a while and see if the side effects go, and then try upping the dose again and hope the side effects lessen second time round.

Will have a look through the list of medications and maybe bring some up next time I see my GP/neurologist if the Topamax doesn't start helping soon.