I can't imagine having the kind of pain you've experienced for 7 years...I've only had a headache (following a viral infection) for 10 weeks, and that's already long enough for me. Unfortunately, I know far less than any of your doctors about this. Currently, my neurologist has me on a low dose of desipramine to see if that helps. I also stopped taking both ibuprofen and Fiorinal (neither of which was an effective pain reliever) in case rebound headache was a part of the problem. I have a positive ANA that needs follow-up and I was going to have an LP this week but it was postponed because my headache seemed much better - but it didn't last.
I know you have been through much more than this.
Have your doctors explored other possible reasons for your pain besides post viral headache syndrome? What explanation do they give for your pain to have lasted this long, and to worsen after another viral infection? What tests have you had done and what were the results? What medications have been tried? I'm sorry to have more questions than answers for you.
It's okay - it's been a long seven years, and if I can help anyone, I will share what I have tried. I've done every diagnostic test from MRI's, to CT scans to EEG's and 6 LP's. It was determined by one neurologist last December '06 when I was hospitalized for a week in great pain that perhaps I had a spinal fluid leak from one of the LP's, and that maybe we should try a spinal blood patch, where they inject your own blood into your spine and it stops the leaking fluid. It reduced my headaches grately, and I was doing much better. I have also visited with numerous neurologists, infectious disease specialists, done bouts of antibiotics, years of acupuncture, chinese herbs...Then I met with a friend who was a psychiatrist who tried what he claimed was an old fashioned remedy of helping migraines with high doses of Inderal LA. Started at 60mg and worked my way up to 800mg - and no, that's not a typo. Also used it with Zonegran 200mg, Strattera, and Topamax. At various other times over the years have tried Neurontin, Trileptal, Elavil, Depakote, Dexamethason, and all the migraine drugs - Zomig, Immitrex, compazine for nausea. You do need to be careful with rebound headaches, and I try to stay away from pain meds as much as possible, but every once in a while I give in. But the Inderal LA combined with the Zonegran helped me more than anything else had in a very long time. At least I could be functional. I have a feeling different meds work differently on different people. If you're not having any luck, talk to your Doc about Inderal LA.
I feel like I have been to every neurological specialist in the area and at Mayo and Loma Linda, and no one seems to have a clue. Other than deal with the pain, that's all I've been able to do. But I can't help but think someone out there must know something...The one weird constant is that my SED rate which I think indicates inflammation is always extremely high.
Oh, one more thing. My favorite pain reliever - ICE! It always helps! As far as why the pain came back after a viral infection, apparently this is what happens. All it takes is an infection to set the pain back into motion. Great...
Hope this helps. I'm sure there are other meds that I have taken, but the bottles are long gone now. I wish you the best and hope that you are pain free soon!
I really appreciate all the information you provided. And, maybe others who read this will be able to provide you with something helpful, something that has not been considered, knowing what your doctors have already considered and tried. (You might have to post again to get someone else's attention, though!)
Is it only your sed rate that is high? What about your ANA, RA, etc? Have you seen a rheumatologist? I saw a rheumatologist once about the high ANA, but he presumed that my ANA was a false positive due simply to my genetics (my mom has lupus) without doing further bloodwork. My neurologist has now asked for follow-up bloodwork, which I still need to have. (BTW, my sed rate was normal.) I'm sure you've searched the internet...do you have any suspicions about the meaning of your high sed rate? What have all the doctors you've seen said about it?
He (my neurologist) originally suspected viral/aseptic meningitis, either caused by the same virus that caused my initial sore throat and cough (the viral infection I mentioned) or caused by an auto-immune process that was triggered by my sore throat and cough. I didn't have an MRI with contrast until last week to look for inflammation of the meninges, though, and it was normal.
I've read that persistent headache like this is sometimes classified as new daily persistent headache. Have you read about that? A couple of things about it - People can usually recall the exact day their headache started (I can in my case), and it often begins following a viral infection. I wonder how often there's some sign of an inflammatory/auto-immune process, as well?
Are you still taking Inderal and Zonegran? My neurologist did mention beta blockers and anti-seizure meds, as well as low-dose tricyclics, when deciding what medication to try first.
Thanks for the suggestion about the rheumatologist. There's one specialist I haven't seen! I've been to three infectious disease docs though. They ruled out lupus, lyme disease, and all of the other usual culprits. I'm not sure what the ANA and RA levels are, I'll have to go back and look at previous bloodwork. The docs all said the high SED rate was due to the inflammation in my body - the meninges, spine, etc.
Once I had the spinal blood patch, my headaches diminished enough that I was able to get off of the high doses of Inderal and Zonegran. I still take Propranolol - I think that's how it's spelled - which is a beta blocker daily. And the migraines went to one every couple months instead of daily. I think it was a good idea for me to go with the beta blockers and anti-seizure meds since there wasn't any rebound effect and it seemed to help deal with the pain instead of just masking it with pain meds. I find the Zomig nasal spray to be the most effective migraine medicine for me. But I tell you, I went through SO many different meds before I ended up with the Inderal and Zonegran. Can't even remember them all. Those two just happened to be what ended up working for me. And again, it was an extremely high dose of Inderal before I got the relief. Most docs were astounded by the amount - but again, it worked! You have to build up to that amount gradually, and go off it just as gradually. But I did get the most relief. Hope you luck in finding something that works for you quickly!
Thanks for the additional information. About your consistently high sed rate, are you saying that your doctors think you have ongoing inflammation? For 7 years? But they don't know why?
When I first got the headache, my PCP thought it was a migraine (even though I had never had a migraine or even much of any kind of headache before, and I'm 40), and gave me Zomig (tablet form) to try. It only made my headache much, much, much worse.
Good luck to you, too. Hopefully there is someone out there who can direct you toward an answer or at least more effective treatment. Maybe that will be the rheumatologist - or whatever specialist a person with a high sed rate should see.
Hi, I've benn reading along, how high is your sed rate? did they try a repeat blood patch as that seem to be the only thing that lessened the pain? Have you been seen by a comprehensive Pain Management Team? Have they considered general anesthesia or hospitalization to try to break the pain cycle? Quix
I am in So cal and have been receiving care at Loma Linda...I am desperate. My posting is Constant fire in my head....I hope you will read it. Just had a Mylegram on tuesday and am so sick waiting to get well. Loma Linda is about done with me....I am considering Mayo after I see a doc at UC Irvine next week. I called LL emergency room last night. I may need a blood patch....this is just getting worse day after day. The doc said 3 days and i'd be well. Today is day 4 and it is getting worse and worse. cannot get up, I am nausious, dizzy and head is killing. I'd love to talk with you. What was your experience at UCLA and Mayo...worth it or not. Any good docs you would recommend?
Sorry I haven't checked back for a few days. Had company...To try to answer all questions, I'd have to go back and check exact number of SED rate, but it is in the abnormal range, and all the docs seem to attribute it to inflammation. No explanation as to why. I have been hospitalized several times to break the pain cycle - the last was on a self-administered Dilaudid IV for a weekend - and still nothing. I work with a great Pain Management Doc - Hilary Fausett, and she has helped ease the symptoms. I'm going again this Friday the 3rd of August for more injections. The rhomboid areas of my back are in constant spasm/burning. I will ask her about another patch...I also see an activator trained chiropractor - Franklin Kam - and he does a lot of accupressure and massage on the spasm points on my back, neck and head. No cracking! Have also been doing a detox foot bath with a machine that he has.
My experience at UCLA was non-eventful. They didn't know what to do with me after exhaustive tests. Mayo was the WORST! I cannot recommend their neurology dept. They lost my medical records, I had to have them re-sent, and they did not even look at them when they arrived. Their final decision was that I was having rebound pain since I was on Vicodin at the time. They wanted me to go into drug rehab. Instead, I gave up Vicodin and all other pain meds. And gee, the symptoms still exist. That's why I try to stay away from pain meds all together. Too many docs will judge you and blame the pain meds because they can't find any other reason. I've been told it was psychological, had fibromyalgia (sp?),was addicted to painkillers, etc. Since all have been proven to not be true, I am still at square one.
mkgross - how are you feeling now? Are they suggesting a blood patch because they think you have a leak of spinal fluid from a previous LP?
Hello-Finally at day 6, my spinal fluid leaking headaches are gone. I was flat on my back for 6 days with 4 very patient kids. It was maddening, So frustrating. However, I can clearly distinguish what a true headache is and what this fire,burning is in my head. TOTALLY 2 different pains. (I am so insulted when a doc says OH, you have a headache. IT IS NOT A HEADACHE!!! The burning is at a lul in my head right now. I seem to get it in waves. Quixotic 1 from this site gave me a web site that has offered me some insite. fpa-support.com. My myelogram showed no csf leaking. I am scheduled to have my 3rd MRI tomorrow. On friday 8/3, I am going to UC Irvine Med center to see a Neurosurgeon that specializes in Trigeminal Neuralgia to see if I can get a difinitive diagnosis. Where is your pain maganement doc located? Thanks for sharing the info about your chiropractor. I was seeing one, just the regular guy that cracked you and never got any relief. I am tempted to try accupressure, I didn'y know there was a different kind of chiropractor. I wish you Good health...
I'm wondering if a drug which affects nerve pain might help such as Neurontin or Amitripyline... I just had an "occipital nerve block" done on the base of my skull and thankfully that killed the terrifying, sharp pains shooting up the back of my head from stiff and painful shoulders and neck.
mkgross - My pain management doc is in Glendale at the Wellness Center for Pain Management. I'm glad you got some relief. Hope you are able to get a definitive diagnosis, and can get out of your pain.
I have tried both neurontin and trileptal for pain, but it hasn't worked for me. The occipital nerve blocks that Manhattan has had helped me more than anything. Botox is also a suggestion, but it never worked for me either. Tried accupuncture as well. Mostly it's the nerve blocks that make it able for me to function. But I still feel/hope that there's something somebody missed. But it is obvious that there are a lot of us with head/neck/back pain out there, and we all seem to be fighting the same battle - kinda sucks.
I hear you. It's depressing. I don't want to keep masking the pain with nerve blocks but there doesn't seem to be a good alternative.
You may want to check out the Marshall Protocol website. I guess I'm a post viral person myself because I have CFS and am currently being treated with the MP.
Thank again for the info...My in laws live in Glendale. I will check it out. I did have an occiptal nerve block and it did nothing for me. The neurologist at Loma Linda has suggested Botox upon my next visit but my insurance won't cover it. She wants to do my neck, shoulders, face, head and back. ( A lot of it) She is nice enough to not charge me for her fee but it is 700.00 for 1 time, and then potientally if it worked imagine that every 3 months...HELP!! I have 4 kids to raise. I'm not sure I can even try it once. As wierd as this sounds, I only get temporary relief if I am able to send a different sensation into my brain like the shower water on really strong, the jet in the spa beating on my scalp. It's temporary but the nerve endings send a different message just for that moment. Other than that, I am hoping my help comes from the fpa-support.org trigeminal neuralgia Doctor. Say a prayer for me friends. Love and compassion to all of my suffering friends who UNDERSTAND!
I am new to this kind of thing but I would like to know if anyone out there has had similar experiences and what they did. Back on feb 18th i came down with an AWFUL headache...it was so bad I thought my skull was breaking...I had to pull over because it made me sick, an hour later I had someone take me to the hopsital...they told me it was a migraine and sent me home with Vicodin. I had no history of migraines. 2 days later I couldnt sit up to change my baby's diaper..my neck was so weak and sore and I was very weak myself...once again someone took me to the hospital and they treated me like it was a migraine....except nothing was working for the pain. My husband said there was no way that I could go home, so they admitted me. They were still treating me like it was migraines until I started running a fever several days later. Then my blood counts were checked and my white count went as low as 2.6, my platlets were low, and my potassium was low. I was in the hospital a total of 12 days....I couldnt walk for several weaks, or drive for about a month because I was so weak. I still have a headache...a very different headache than I had ever expwerienced before this bad virus....it has never gone away..not since Feb 18th....I am on amitriptiline at night it helps it from being so bad that I cant function..but the pain is still there 24/7 for the last 6 1/2 mos.
I have had MRI's, catscans, eegs, nothing has showed abnormal, but my head pain is real and no one can seem to give me any answers except medication that only helps somewhat.
my son, who just turned 6, has had cronic daily headaches for 2 years now. no one has helped us except maybe the naturopath a bit (with suppliment) the ped just says it is migraines and wants him to take amitriptiline at a low dose b/c regular pain meds do nothing. these headaches do not totally stop him from playing but do make him less social and less active (children often just get used to pain and go on as they don't understand it). the pain gets especially bad in while driving (motion?). I had never heard of post viral headache syndrome until reading this just now. Can they do tests for PVHS? Has anyone heard of a young child with it? Does
Thank you so much for sharing your information. I am in hopes of finding something for my boyfriend who has suffered from this post meningitis headache nightmare for the past 9 years with no relief and is just getting worse as the days go by. Have you found any relief since 2007 when you first posted? He, too, has been to every doctor, specialist, chiropractor, accupunture, etc. there is. One of the top neurologist was treating him for a year with no relief from the meds they prescribed him. I'm at a point where I'm researching what other countries may be doing that the US has not approved to atleast find some sort of relief for him. Any suggestions as to what you have found or been through the past couple years would be greatly appreciated.
My boyfriend too is having post meningitis headaches and severe neck pain. His doctor seems to think that it is a result of the occipital nerve, either being pinched or bulged in some way. The doctor has recommended massage therapy and if that doesn't work a nerve block will be used. A friend of my boyfriend had a similar experience which eventually resolved, but he could not clearly say if it was the massage therapy that helped him or not. But this may be something worth looking at along with the above mentioned leaking of fluid r/t a spinal tap procedure, which is not the case for my boyfriend. Good luck! I hope we all find a resolution to these aweful conditions, which take over every aspect of our lives. And good luck to all of the significant others and family members of those in pain, it can be heartwrenching for us to sit by and watch someone we love in so much pain and know we can do nothing about it. God bless
I am really sorry to hear about your condition. In 1997 I unfortunately contracted viral meningitis and encephalitis. After 5 years of radical research treatments and therapies including: coma, Raskins DHE45, Thorazine, full bore IV prednisone, etc... I was told by the best minds in medicine: Local Neurologist, Psychiatrist, Mayo Clinic, Houston Clinic, Montifiore, etc.. that It was Post Infectious Headache disorder. The only trial that showed even minimal results was the steroids, but would be dead by now if they had chosen that route from side effects. Finally they sat me down and explained that they could only offer a pain management solution and further diagnostic testing would be fruitless. Believe me when I say, "if there was a trial, procedure or drug, I was the guinea pig.
After 5 years of searching for a cure, I accepted the need to maintain a pain management protocol. Although it did not cure me, The medications allowed me limited function to raise two great kids and marry a wonderful woman. Unfortunately, my doctor died this past January.
For the past 8 months, I have re-visited all the tests and procedures tried 15 years ago. Nothing has helped and I must lie in a fetal position for just about 24/7 just to maintain my sanity. I wish I could offer you comforting words, but I have found that when it comes to Brain Medicine, we are closer to leeches and tripaning than Star Trek.
I refuse to live in this state for the rest of my life. I suppose each of us must make our own decisions on what the future holds for us. I am still trying new things, but when the doctors finally admit there is no help for my situation, I will take the appropriate action we allow animals who are suffering in agony. Florida has an epidemic on its streets because of a few bad people selling their pain meds. Our reactionary politicians decided that they could make it go away by regulating all the meds that made my life bearable illegal. This seems typical with the medical establishment too. It is too dangerous for doctors to treat intractable pain anymore.
Good Luck & God Bless