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05/13/2010 09:57 AM

Hi! Wanted to introduce myself to the group : )

amanda52488
 
Posts: 7
New Member

Hi there : )

My name is Amanda. I am a 21 year old female. I am not sure how active this group is, but I thought I would give it a try. I was diagnosed with NDPH a little over six months ago, and so have a long journey ahead of me, and boy has it been a rough one so far; completely changing my life. I look forward to reading through the group and reading other peoples stories... and seeing what has worked for them Smile

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05/13/2010 10:11 AM
MaryR
MaryR  
Posts: 4122
Group Leader

Hi and welcome, We are pretty active around here (though it is purely coincidence that I am on right now). I have had NDPH for 4 years now and I would have to say that for me the first 8 or 9 months were the hardest. It wasn't just being in pain, but all the changes and adjusting that I had to go through. Eventually I did find meds that have reduced my pain level and helped my overall life improve (my current ones are Topamax, and Seroquel if you are interested, but they don't work for everybody).

Feel free to explore the site and ask any questions you have. We are a very friendly group.


05/13/2010 10:20 AM
amanda52488
 
Posts: 7
New Member

Thanks for the reply!

I believe that I am on a drug similar to Topomax.. Zonisamide (Zonegran). I then take (sp?) Imethocin 2x a day for severe headache and then I take Magnesium and CQ10. My Neuro also changed my antidepressant from Citalopran to Pristiq because it is supposed to help with headaches, but it is more expensive and so I have to go back to the Citalopram. I honestly dont feel that these medications have really helped me. Another thing I struggle with is that I dont feel the support from my Neuro like I feel that I should.

I get monthly migraines as well and so my neuro has given me Maxalt for that, but it makes me extremely sleepy and fatigued. The one thing that I have found to help with the severe MIgraines is Depakot. Although My Neuro only gives that sparingly for a few days.

My neuro belies that most of my NDPH has to do with stress. Because of this I have in my last year of college gone from full time to part time, cut back half my work schedule and moved back home with my parents. It has been really difficult at times, feeling as though no one understands as it is not a physical disability.

Any suggestions? Or comments. Thanks for listening to me vent!

Amanda


05/13/2010 12:17 PM
MaryR
MaryR  
Posts: 4122
Group Leader

It is hard to find meds that help, I think I have been through 15 or 20 different things (over time of course) and eventually there were a few winners. I did take zonisamide at one point, but it didn't agree with me at all (it made me worse instead of better) so I didn't last long on it. Some other people here have found it helpful, but meds are so individual that there is just no way to predict what will work for any given person without trying things out.

If you have been on your current meds for a long time, but don't feel that you are getting anywhere with them you can always ask your neuro if there is something else to try or how long it will take to tell if the meds you are on are going to work (some things take a long time to start working- topamax being one of them).

I also take Maxalt as an abortive med when things get really bad, but it makes me really tired and very drugged. It also doesn't always work for me which really annoys me, but at least it sometimes works.

You could talk to your neuro about the depakote and whether there is a possibility of rearranging your meds so that you could try that one as a daily preventative med. It can be taken that way (I have done it before, it is on my "tried that" list) but it is a strong med and he may have some good reasons to prefer not to mix it daily with some of your other meds (I don't know all the possible interactions, but it can interact with Topamax...rare but of course rare things happen to me).

My NDPH can definitely be made worse by stress, but even with a very low stress life it is still there (and I wasn't particularly stressed when it started either).

If you and your neuro just don't communicate all that well it may end up being worth looking into getting another opinion. I don't know if you have a headache specialist now or not (usually a neuro who only treats headache patients) but mine has been extremely helpful in knowing what to do with a headache like mine.


05/14/2010 12:10 AM
Enbee
EnbeePosts: 1556
Senior Member

Hi Amanda and welcome!

I have had my headache for three years next week. I am finally on a combo of drugs that works for me - Cymbalta and Seroquel, but it took over 30 different treatments to get to this point. I am not pain free but in a lot less pain than I was and much more functional.

Definitely talk to your doctor about trying something new if you aren't finding your current meds are doing much for you. There are lots of things out there to try.

As for the stress issue. I was under a lot of stress when my headache started. I had post-viral fatigue and the extra stress from work is probably what triggered it in the opinon of several doctors I've seen. So it's possible the stress you are under is a factor. You were probably suceptible for some reason, maybe your immune system was comprimised, maybe your neural architecture is 'different' it could be many reasons. You'll probably never know Smile


05/15/2010 06:34 PM
amanda52488
 
Posts: 7
New Member

Thanks for the reply Enbee. I am giong to look into the Seroquel. My immune system was compromised when I was diagnosed. I had mono and a bunch of other sickness's going on.

05/22/2010 04:55 PM
BecsMom
 
Posts: 52
Member

Hi:

Same with my daughter. Immune system compromised. She was diagnosed early Oct or so after pain came out of nowhere on 9/16/09. She is 17. 42 different drugs later she is now drug free but not pain free. Her pain actually stayed at a 12 out of 10 for monthsSad

To many side affects from the drugs. She also has insomnia and low blood pressure. She had allergy shots for years as well as mono. This came on within a month of the Gardasil vaccine.

She is home tutored and doing well in her studies. She just deals with the pain which is at a 7/10 right now. The only thing that has changed her pain is warm weather. We went on vacation and her pain came down twice. Her neuro was encouraged and has hopes it will go away on it's own. She is also very thin with a very thin swan like neck. Dr Rozen in PA says this seems to be common factor in his NDPH teens. She also has TMJ. She will be starting physical therapy for that next week.

The hardest part for her besides the pain is the whole life change. She lost her job, has not gotten her license yet but is working on driving. This is an invisible disease so many of our closest friends just don't understand. Thank goodness she has a wonderful attitude and feels this is making her a stronger person. She is determined to graduate with her class. She also is seeing a pian mgmt specialist but really is not getting much out of it. She tried the meditating but notta! Would like to try acupuncture but her jaw issue will not allow it.

Stress and immune system is a key link. Just wish a Doctor could figure this out, but they don't.

I wish you the very best!


05/22/2010 07:53 PM
SKelly
Posts: 5
New Member

HelloBecs Mom and Everyone Else here...

Been a long time since i've visted this site...

My question of the day...has anyone tried anti-rheumatoid drugs for headache?

S


05/23/2010 10:07 PM
Enbee
EnbeePosts: 1556
Senior Member

SKelly, I haven't and I can't remember anyone else that has (although I've probably just forgotten). I think there is not reason to think they wouldn't have a chance of working, given a lot of us have auto-immune components to our condition. Most of the docotors don't understand why the drugs that help us do, it is really trial and error.

05/24/2010 07:57 AM
MaryR
MaryR  
Posts: 4122
Group Leader

I don't know of anyone that has, probably because most doctors are reluctant to prescribe anti-rheumatoid meds without the diagnosis since they do intentionally suppress the immune system. If anyone happened to have both diagnoses they would be the ideal candidate for a trial though since they could get it with no objections.

I would be very interested to know if it works.

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