New Daily Persistent Headache Support Group

Hello

Found this website and thought i'd share my story and experiences and maybe get some advice and tips on treatments etc.

First of all im 25 years old , always been in fairly good shape and health. Never struggled with any headaches before , worst i've had is a few sinus infections and colds without much in terms of headaches.

It all started back in the beginning of may 2010 , was building a terreace (work as a carpenter/builder) and I got slightly confusion and very dizzy with a headache , nearly fell down from the terrace a few times , by then I went home on sickleave to get some rest thinking it was the flu or a cold. But it never went away, I rather got worse and headache increased in intensity. After about 3 weeks I went to the doc and he subscribed me some painkillers etc. After 2 weeks it didnt improve at all and I got sent to a neurologist (specialized in headaches).

She feared I had an infection on the nervous system and I put in the hospital the next day. They took all kinds of bloodworks and I had a spinal tap , MRI of the head with contrast fluid etc. They found nothing wrong and diagnosed me with tension headache. So I got sent home after 5 days with Nanzipran (not sure of the name , tiny brown pills) and painkillers to see if the headache would subside if I got drugged down and pain went away. After 2 weeks on this (max limit before danger of medical headache) I actually had a day and half of pain relief , went back to work. The evening of the day at work the headache came back. Got subscribed more painkillers and back on sick leave because of the dizziness and pain.

This made them suspicious of sinus infection since I've had some troubble with that before. Got sent for CT and MRI scan of sinuses and went to 2 diffrent specialists in throat/ear/nose. They found nothing wrong at all.

Right after newyears 2010 I got sent to another neurologist because I found 2 sore spots on the back of the head , and figure out that the headache lessened if I knocked my head with my hand or a wall

He said I might have nerve damage on the 2 primary nerves that comes out of the back of the skull , by then I also suffered from shakes in the arm, jumpy legs (legs kept feeling tense when I tried to sleep), severe dizziness and mild confusion from time to time and slight vision blurring (like see through worms floating infront of the eyes) also my headache had intensified by not only being on the back of my head but also on the front.

So I got nerve blocking shots from my GP straight into the nerves (marcain) this relived alot of my headache and it felt like I had just worken up from a really good nights sleep. The headache on the front of my head persisted but was alot milder. I had this for 4 months and I was back at work and everything seemed fine , the headache on the back of my skull was gone and I only had a very mild headache at the front which hardly bothered me at all.

After 4 months it all went wrong , headache got really really intense and I was bed struck for a whole week , nerve blocking suddenly did not work at all , so we tried with Marcain and sterioid injection , this made it ALOT worse for 3 weeks , could hardly put the back of my head on a pillow even.

Tried 2 more goes of nerve blocking without any relief at all , worked for 3 hours max (suppose to go for 5-12 days).

Now im stuck with a headache ranging from 3-10 every day , when I peaks at 10 im bed struck with such pain it just makes me want to end it (aint gonna of course love life to much for that) but its so intense its nearly unbearable , when it happens my regular headache goes to a 8 and i get pulses of headache ranging 10 , this can last for a day or several days. Makes everything feel cloudy , dizzy and I can hardly walk.

Edit: I have no sensitivty to light , noise etc. no vomiting or nausea.

Nothing seems to increase or lessen the pain , heavy workouts , relaxing etc. changes nothing.

I was at the specialist center for headache up in Trondheim in Norway (im from Norway) and he diagnosed me with NDPH.

Its been nearly a year and half now and I've been put on several diffrent drugs during the course of my ilness , Narzipran , Neurotin , Migraine pills , all kinds of painkillers , serotex etc. Nothing has proven effective or give any relief at all anymore. With the intense pain and dizziness spells i cant work anymore (officially disabled) as I could easily fall or damage myself with the powertools. I never get good sleep, when I wake up it just feels like ive had really bad sleep and it takes a hour or two before I can function normally.

The only thing ive found that soothes my pain slightly is smoking tobacco. But now this is even not working much anymore.

Ive been forwarded to neruo-surgery against my doctors will , to try permanent block the nerves on the back of my skull as a last desperate attempt to lessen the headache.

I've been put back on Serotex to try increase the dosage up to a 100mg (adding 10mg a week) in hopes of this helping , and a new migraine med to try take the intense pain sessions when they start. Previously on any med affecting the nervous system (Cosyland , migrane pills , Pinex Forte etc.) I've been getting intense headache , pain in the neck , face and upper back and shoulders. Which they cant seem to give any answer for why it happens.

Anyway thats my story , it helps a bit to see that others have symptoms like or similar to mine.

Helps to know your not alone , even tho it seems pretty rare and no effective meds for it , gotta live in the hope they find something that works.

Post edited by: Znik, at: 09/06/2011 04:49 AM

Forgot to add a question:

Have anyone been getting more sick after getting NDPH . During the last 4 months I had 4 viral airways infections. 3 I had in a row , 1 week sick 1 fine 1 sick etc.

When I read your story it makes me think of occipital neuralgia (there is another forum here where the people diagnosed with that hang out, you can read some of their stories and see if it sounds the same to you. http://www.mdjunction.com/occipital-neuralgia )

The nerve block working (and I suspect it was done in the back of your head near the hairline?) especially makes me wonder about that. I don't know why it didn't work the other times they tried it though. That might be why you didn't get that diagnosis from the doctors since it didn't keep working. I don't know.

There is a surgery in the United states that is currently still considered experimental (by insurance at least) that has helped a number of people with occipital neuralgia, and some with NDPH (the success rate is not as high with NDPH), called nerve decompression, but I don't know if it is being done anywhere else yet so that may not be of help to you at this point.

As far as getting sick more often after my headache, I always got sick a lot. Since my headache I don't have a job so I am not out mingling with the world as much so sometimes I manage to miss the germs going around, but these days if I am exposed to something I nearly always get it. I think my body is just worn down with all the pain and such and isn't as strong as it used to be.

I have been suspecting occipital-neuralgia myself and my GP agrees, which is by I demanded to get forwarded to neru-surgery, but its going to be a few months for that as theres queues. Still does not explain why the headache at the front of my head kept going even after blocks were in place tho. Which is why they suspect NDPH as well as the occipital problems.

The nerve blocks i've been getting at the back of my head probaly around mid head. Got 2 points there if pressed causes pain , but only to the back of my head. The headache at the back of my head was the worse pain before , but now its mostly the front of my head that gives the worst ache.

Wont know that untill after i've done the surgery tho , they do cryoanalgesia (freezing the nerve) here atleast , and other things. Not sure on the options on what kind theres on offer yet. Thankfully in norway we dont have health insurance on hospital treatments , they are free here.

Z, there're some people here who have had occipital blocks along with supraorbital blocks. I mention this because you wonder why your frontal headache continues even after the occipital part wanes. The supraorbital blocks may reveal issues with the part of the trigeminal nerve that covers large parts of the forehead (both on the outside but also eyes and inside nose). The supraorbital blocks are very easy to make. Try searching around for stuff that mentions both kinds of blocks. Be careful before you have something irreversible done.

Post edited by: Regreticus, at: 09/06/2011 04:29 PM

Post edited by: Regreticus, at: 09/06/2011 04:31 PM

Welcome to the group! I would purse the ON route more with different specialists. That said, if it was me, I would not do any of the surgeries currently offered. I think the risk:benefit ratio is too high. I have read of too many people paying tens of thousands out of pocket to get no relief or even end up worse. A few success stories though. I think you may have more non-surgical options, or maybe even a ON stimulator? That is less invasive than the hands-on nerve stuff.

Botox may be worth a try, or even the nerve blocks with a different doctor. I had a pain doctor suggest to do one under imaging (I had failed one without it), so there might be differences in techniques. That, and time has passed so you may respond again?

How many preventatives have you tried in the beta blocker, anti depressant, anti seizure realm (besides Neurontin)? What about Topamax, Lyrica, Nortriptyline, etc? Are you off the pain killers now?

I think I definitely have some auto immune stuff going on. I got my headache in college and I was getting sick tons, but the last few years (out of college) I haven't so much, so maybe it was germs & stress. I have however kept developing other semi auto immune related conditions. I was writing on another thread about them. I definitely think for some NDPH is auto immune. Basic bloodwork with a white blood cell count and ANA is an easy step to look into this. With what you write I think you may have something else going on...some sort of pain syndrome reaction.

What is Serotex? Can't find it on Google and I'm surprised to read something I haven't heard of lol. Best wishes.

Tortoisegirl, I hunted it down, Amitriptyline over here, the name is just different in Norway. Nothing actually new.

ON stimulator seems like its worth a try , will check that out with my GP.

After the first 2 blocks failed to work , we waited 6 weeks to see if everything would calm down , next block still failed to work. I did find out that some blocks are made with anastetic, effedrin , sterioids and opiates tho , i've only had the anastetic (Marcain) so think that might be worth a shot. Also to try getting the block under imaging , saw some places they use ultrasound etc.

The supraorbital block might be a option too.

Really nice to get some more information guys , the docs over here in Norway seems mostly baffled with this kind of headaches , a few of the neurologists i've been at has been totally clueless. Guess thats the downside of a small country.

Pretty sure I dont have auto immune disorder , my GP during this time has taken any kind of bloodwork possible on me , everything has come back fine. So im really really healthy just totally destroyed with headache , yay

Have not tried any of Topamax, Lyrica, Nortriptyline. First year of headache was mostly wasted on docs trying to sedate my headache rather than stopping it , but im on the Amitriptyline atm and got 10 other ones that the neruologist in trondheim suggested (he said they have been treating me with all the wrong meds so far) and a new migraine pill to try when I get the 10 headaches , hopefully without the pain reaction I get from them.

On a sidenote: Any of you know where they do Nerve-decompression and/or ON stimulators ? Im not sure if they do them in Norway , but with the free hospital choice we have over here I should be able to travel to any country for free and get hospital fees covered by the state.

I don't know exactly which hospitals the nerve decompression surgeries are done at (the Occipital neuralgia board could give more details on doctors and hospitals since they have had more people actually get the surgeries). I know there is one in Dallas, Texas, someone in Southern California somewhere, and one somewhere near Washington D.C. that I have heard of. There are probably more as well, but I certainly don't remember details like what hospital was used.

I think the stimulators will be available much more widely since that is not considered an experimental procedure anymore in a lot of places. I suspect there are places in Europe doing it, but again I don't know specifically who or where. I am nearly certain I read of someone from England having it done though so at least there someone was doing it. There may be other places as well, but I just don't know, unless their scientific research is written or republished in English I have no hope of understanding it (high school level German just doesn't work for this) so I can't say for a lot of countries what they have.

It is really good that you have a list of good meds to try now. Several of us (including me) have had significantly reduced pain levels from medications, though it is often a long process to find what will work on each person's individual headache.