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12/21/2011 02:30 AM

ndph since july 2011

Posts: 4
New Member

hi there

my name is barbara and i life in switzerland and my headache started this year in july after an infection (sorry my english isn't the best). after a week i went to my doctor and we tried some pain medications (ponstan, brufen) but they didn't work, then we made an MRI, they found a LIPOM (i don't know the english word but they said that it couldn't cause the pain.

then i went to a headache clinic in zurich they gave me surmontil (an antidepressive)i slowly felt better the pain wasn't that bad any more and i began to go out again and even enjoyed life but the headache was still there 3-4 in a scale from 1-10... 2 weeks ago i went of the meds (i didn't realize that the meds were helping me that much) und now i'm a mess pain 6-8 i'm on topamax now and starting with surmontil again. i'm very depressed and full of anger and fear that this will last for the rest of my life Sad.

greetings from switzerland


12/21/2011 10:21 AM
Posts: 4121
Group Leader

Hi Barbara, Welcome to the group. I am sorry to hear that your headache came back full strength while you were getting off the surmontil (I don't think we have that one here, but I am not sure, it is always confusing with the different names). It is really frustrating when you think you might be really better to find out that it is not, just that the meds were helping keep it under control.

Still the meds controlling it is something, and it may be that you will someday be able to get your pain levels down to zero and then SLOWLY taper off the meds. I have heard of a few people who have been able to do that without the daily headache coming back, though they still have to be careful to take care of themselves with things like getting enough sleep and eating regularly to keep from getting occasional headaches.

Even if the headache does last long term it will probably not be as hard to deal with as it is right now. I know my first 6-9 months or so were by far the worst emotionally (as well as physically since I didn't have meds that helped much yet). I had never heard of a headache that lasted more than a few days and couldn't imagine how anyone could deal with one lasting for months or years. I am now at 5 years and it hasn't been nearly as awful as I thought it would be, though I am sure the idea of 5 years is still terrifying to you (it would have been to me during my first year no matter what else they said).

The fact that you have already found a med that helps so much is a really good sign though, for a lot of people it takes a lot longer to find something that even makes a dent in the pain, and you already have a med that makes a significant difference in your pain level. I hope that it will do even more when combined with the topamax (which was the first med to help me).

12/21/2011 08:22 PM
tortoisegirlPosts: 3243
Group Leader

Welcome to the group! Sorry you are in pain now so bad again but I think there is a lot of hope for you to get it better under control since you had such great success with your first preventative. I haven't done that well with even dozens of them. Give it some time (unfortunately Topamax can take a few months of a trial at the therapeutic dose). If no or little help, there are so many other options. It gets better, so hang in there!

A couple things I would ask your doctors are about ruling out other conditions (besides those ruled out by MRI), such as with blood work and thorough questioning. It can really take going to a couple headache specialists before you can become more confident in that. Also, I'd ask about something to break the headache, such as an antibiotic or steroid. Pain meds just mask the pain (and its rare they work well for us), preventatives can help reduce it, but some meds may actually break the cycle for some, and are more likely to work in the beginning stages of the headache. Best wishes.

12/22/2011 12:24 AM
Posts: 4
New Member

hello mary and tortoisegirl and thank you four your kind words!

i would love to try antobiotics but the doctors in siwtzerlands won't try this because they say it woulden't work Sad...

in january i will make an appointment with my old doctor (no headache specialist) maybe he is open to this and will give it a try.

i wish you all a merry christmas and a happy new year!!!

12/23/2011 09:55 AM
EnbeePosts: 1556
Senior Member

Hi Barbara and welcome! It's lovely to have someone from Swizerland in the group, I'm in Australia Smile

Sorry to hear about your headache Sad It really is no fun. It's great news that you have found a med that helps somewhat. I definitely agree with the others that it's a great sign. Topamax is often a good med for many people with this condition so definitely worth trying. Make sure you titrate the dose up slowly and give it time work.

It can be hard to get doctors to try new meds or treatments they aren't familiar with. One thing you can do is print out information (particularly journal articles or trials/studies) from the internet and take them to your doctors to read. It doesn't always work but sometimes they just need to know there are other options out there.

Let us know how you go!


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