New Daily Persistent Headache Support Group

Hi Everyone,

I just wanted to say how great it is to find a supportive atmosphere here. I have been on another boards and people argue with each other.... and try to convince them to stop taking medications... it is more stressful than supportive. You all have created a good thing here.

I've had NDPH for over 5 years. It started during an acute EBV infection. I don't need to tell you what the headache is like. I also developed problems with fatigue, vertigo, persistent upper respiratory infections, malaise, recurring fevers, sore throats, swollen glands, mental confusion, etc. etc... I was then diagnosed with chronic fatigue syndrome.

Several on the board have described doing too much or overdoing it as something that worsens their headache. This is definitely true for me, and it also worsens my CFS symptoms. I have heard speculation that both are neuro-immune or auto-immune; I wonder if they are related? Anyone else with CFS too?

After trying several neurologists, probably 20+ meds, I'm at a much improved point. I found a good combo of drugs and I have a good number of low-paint days and am quite functional (working again, socializing again). Average day I'm around a 4/10.

While I know that I'm quite fortunate, everything still feels precarious. I'm not dealing well with uncertainty. I have days when I have trouble with how unpredictable my life is, the constant need to plan ahead, cancel plans, the plan B. Some days, I am just... ugh from it all.

Welcome to the group! Thanks for the intro. I sure think NDPH is auto immune related, and my doctor speculates this too. No proof yet, but many many people with NDPH have auto immune issues, whether they have a diagnosed condition or not. I suspect I have something auto immune going on, but no diagnosis. Around the same time as my headache started my weird symptoms started. They have got worse over time--stuff like fatigue, joint pain, sleep and tummy issues, etc. I am seeing a specialist to evaluate for fibro soon. My neuro does auto immune bloodwork of some interesting markers that aren't as mainstream (forget what they are called--I'll have to look it up sometime), and my body showed a lot of inflammation. My doctor ruled out Lupus and arthritis so far but that is it.

Do you mind sharing what you currently take? Just curious. Each of us that has has some success with meds seems to be on a different combo. Mine is narcotics and muscle relaxers. Congrats on the improvement! When I have those miserable days, I try to focus on all my better days, and how much I still can do, not what I can't do. I try to pace myself and rest a lot even on my better days so I don't get the fatigue as much, and try to keep the high pain cycles at bay. I tend to get 3-5 days of worse pain then 3-5 days of lesser pain, then repeat... My pain meds have it so I take more on my bad days, and I take my doses so I am highly medicated at work and not much of anything at night.

So glad you joined us! Let us know how we can help. Best wishes.

Hi ML8 and welcome to the group!

I think you might be my doppleganger I also started out with an EBV infection, then it progressed to chronic fatigue (which I still have) and then work stress/hours started off the headache, which I've now had for over 3 years. I have a lot of the same symptoms as you. I get a lot of vertigo, nausea, fatigue, swollen glands and infections etc.

I tried over 30 meds and treatments before I hit on the right combo. For me this is Cymbalta and Seroquel. My average pain is now more like a 4/10, whereas it used to be between 8 and 9/10 pretty much all the time. So it is a huge improvement. I am glad to hear you are quite functional. I'm still not able to work as doing much at all makes my pain go straight back up. That said, I'm able to get out and do a few things these days. I can at least do the grocery shopping and have the occaisonal social activity and do some moderate exercise.

Welcome again to the group. You'll find we are all very friendly here!

Hi Enbee and Tortoisegirl,

Right now I am taking a beta blocker, Namenda, topamax, klonopin.

I have had better luck with the preventives than abortives. When the pain gets bad, I'm kind of stuck.

Enbee, we do sound quite a bit alike. Pretty strange. I too was up at 8/10 all the time.

TG, please keep us posted on the fibromyalgia. Hopefully you will get some more answers and feel better soon.

And thanks for the good thought... to keep focused on what we still can do.

Hi and welcome, I think it is really wonderful that you have been able to start working again. I hope to work a normal job again someday, but I am really glad now that I am able to do much of anything (I make jewelry and my family helps me sell it at craft shows). I too used to have much worse pain, but after much medication experimenting I have gotten it down to usually under or around 4/10 unless I provoke it with light, noise, or just overdoing.

I know what you mean about everything feeling precarious. It is wonderful when I am able to start doing a little more, but I never know how long it is going to last or whether the pain will get worse again. Recently though it has seemed to be pretty good overall for me and I hope it will stay that way for you too.

A girl from another health forum who also suffers from CFS caused by an EBV infection, sent me the following link:

http://cfids-cab.org/cfs-inform/Reviewcfs/sabin03.pdf

It's not about NDPH but maybe some people on this board might be interested anyway. The girl who sent me this article had permanent dizziness and got much better in time without medication.

Interesting article. Shows a lot of the battles CFS patients face with their physicians, as much of this article showed a belief that it is a psychosocial illness. Most research instead shows physical abnormalities that probably indicate an immune or viral cause/correlation.

It's a real problem, because physicians who believe CFS is a psychosocial issue will prescribe talk therapy (which can be helpful for coping, but not as a treatment in itself) and exercise (which can worsen some patients symptoms or provoke severe relapse). They'll do this instead of managing pain with medication, addressing cardiac issues, etc.

Glad the other person you mentioned got better over time with the dizziness. I was for awhile, but it is getting worse again.

Franziska that is an interesting article. I have been diagnosed with chronic fatigue, fibrmyalgia or post-viral fatigue depending on the doctor you talk to so interesting to see how they are all 'related'.

I agree that it is difficult to get some doctors to take a lot of this stuff seriously, as with the continuous headache. Luckily most of my doctors have been really good and believe our problems are real.

Update on my suspected fibro: My primary referred me to a rheumatologist after I asked about the blood work we had done that he thought ruled out Lupus and arthritis as causes of my joint pain and if he thought fibro was a possibility considering my gamut of symptoms. He kind of thought about it for a minute but didn't say anything but did give me a referral to the rheumatologist, saying it sure would be nice if that was an explaination for a lot of this and if there is something that could help the symptoms and maybe even my head pain.

Had the rheumatologist appointment yesterday. Long story short he thought I very possibly had fibro, but at the very least did have something auto immune going on and generally was in really bad health. He actually said that--so sad to hear. I filled out one of those check your symptoms off pages and it was over half full plus I filled in some. He is having me try a med called Plaquenil. Its the only thing he said he'd want to try me on because it can treat a wide variety of auto immune and rheumatological disorders.

Its about 50 years old and developed for Malaria. Low risk of side effects and cheap, but takes up to 6 months to work. The other newer meds apparently are higher risk. He actually said 20% chance it would help my head too! Not sure I believe that, but anything that is cheap, low risk and has any potential of helping I will give a try. The med can specifically help people with the fatigue and joint pain of their conditions and generally help their immune system. I see him in a month but I can stop the med if I get any side effects. He also re-ran some blood work, the typical stuff and the Thyroid stuff since I had a slightly out of range value awhile back. Seems like he is really covering all the bases even if its stuff out of his specialty. Fibro doesn't really fit in any doctor's specialty and rheumatologists have got stuck with it based on the rheumatology symptoms.

So, this pretty much confirmed I have the start of something serious going on, but strangely enough I thought it was a really good visit and since I already had convinced myself it was going on, it wasn't any sort of shock or whatever. More of a reminder of how ill I really am. We discussed a lot of my random symptoms, childhood health history, and the impact on my current life. Even in the last few weeks my balance has got really bad. I can't stand in one place too well without starting to fall over, so I'm kinda worried about that progressing. I walk fine though so that is good. I still am hiding everything from work. Trying not to worry my husband.

My head has actually been pretty good lately, as good as I get. Especially considering how crazy my life has been with work and the seemingly endless list of housework and such. Preparing for our honeymoon cruise in a couple months and still trying to get our after marriage checklist done with the insurance needs and student loan consolidation. How is everyone else doing? Anyone else taken Plaquenil? Hoping for little to no side effects. Stomach issues are the most common. I have plenty of those already. Best wishes.

Kate, that sounds like a really good appointment. It is great when someone takes the time out to really look into things. I haven't heard of Plaquenil before but I'll have a search around and do some reading on it now that you have mentioned it. I hope it provides some relief.

It is interesting that is the only med that the doc thought would work. I know there are a few things that are prescribed for fibro type conditions, including cymbalta, which I'm on. I suspect that is part of the reason it works for me as I have a lot of overlap with CFS/fibromyalgia type conditions.

With the balance thing I have that problem too, although it comes and goes alot. I've been through ENTs and there is nothing obviously wrong but my neuro things there is some damage to the nerves in the vestibular area of my brain which is why it happens to me. I mentioned that the medication Stugeron (Cinnarazine) has been helping and has no real side effects for me. I'm not sure if you can access it there but it might be worth looking into. All the usual meds for vertigo type symptoms didn't help me at all.

Let us know how you go on the new med.