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Old 06-04-2001, 08:27 PM   #1
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Verla Panayotis HB User
Post post viral headache syndrome

Hello, I'm new at this. Just posted a message on the headache site. Sorry to repeat myself but I'm posting here because post viral headache syndrome is usually clumped together with cfs. My 11 year old son, Nick has been diagnosed with pvhs at Duke Hospital. He came down with a flu-like virus in Dec., 2000. It was accompanied by a severe headache (he describes it as stabbing pains behind both eyes) that has not stopped torturing him for even one minute (over 5 months now) since the onset of the virus. All neur. and other tests are normal. He's been on most migraine meds with no relief. Some even intensified his pain. Right now he's on neurontin, elavil, florinet, and zovirax. Still nothing is working. Nick has a great Ped Neur from Duke who is still working very closely with us on trying different things. I need any info or stories from anyone who is familiar with this syndrome. My once vibrant son has spent the past 5 months of his life flat on his back in a dark, quiet room in horrific pain. Please help!! THanks, Verla

 
Old 06-30-2001, 08:51 AM   #2
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I'm sorry for your son, I hope he gets better soon. These viruses are unbelivable, I can't believe how long it takes for the body to recoup! I had pain in my eyeballs too, glands in my head swollen, its only been a few weeks, waiting for them to go down, hoping the DR. are right when they say it is a virus that will go away. I see your son is on alot of medicines, I tried topomax, similiar to neurontin, mostly used for epilepsy, migraines, nerve pain, now used also as a mood stabalizer. Had to go off it after 4 months, had no appetite, felt weak and not like myself, some days I would stay in my room worrying about my symptoms.

I just hope your son gets better, eating well and vitamins, I think do help, thats what i'm doing right now, a regimen of b12, echinacea and ginseng. I feel a bit better, but the glands are still up, my head feels like it had an infection. Who knows?? I really hope your son gets over this bout of "whatever", and gets strong and like his old self again!! Wendy

 
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Old 01-22-2003, 08:21 AM   #3
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I can totally relate to this. After a trip to Mexico in May of last year, my fiance came down with a viral infection and a constant headache. We tried everything to alieviate his headache which kept him from work and school. As we searched for an answer and went through a million tests, scans, mris, medicines, etc, his doctors approved increasing amounts of Vicodin (hydrocodone).

Finally, in November, we went to Mayo Clinic. The doctors told us that his headache was probably a result of the viral infection. Then, to our horror, they told us that the Vicodin was causing rebound headaches, and that's why he had seen no improvement in his pain. After a while, the Vicodin actually began mimicing the original headache, and this caused the pain to worse.

After an excrutiating detoxification period (which was necessary because of physical but not emotional addiction), his headaches have begun to improve. The headaches are by no means cured, but at least they're no longer caused by the same medicine taken to heal them! My fiance was on low doses of Vioxx for a while, and now he takes even lower doses of Naproxen Sodium, while we try to avoid another pain-reliver addiction.

You all might consider how long your loved ones have been on pain-relievers (even over-the-counter), and ask your doctors whether the rebound phenomenon could be intensifying the headaches. Don't be surprised if the doctors and specialists seem unaware or skeptical of rebound. After all, we had to wait seven months and go all the way to Mayo Clinic to find a doctor who would tell us the truth.

My fiance still suffers, but he is back in school and will be working soon. I'm starting to see the person he used to be again. I pray that each of your loved ones who are afflicted with these problems will be feeling better soon.

P.S. I would encourage you all to watch for signs of depression in your loved ones who are suffering with this condition. My fiance never admitted it, but the constant pain, tests, and doctor's visits along with the isolation and boredom really made him blue. He couldn't work or take any classes. He got so tired of our apartment; he couldn't focus enough to read, play his guitar, or surf the internet, and the visuals and sound of movies and television often worsened his headache. He couldn't drive and had nowhere to go during the day while I was at work. He couldn't go outside for long because the heat intensified his headache. He became bored and lonely. Please remember that your loved ones may be feeling the same way, and try your best to give them as much stimulation and company as they can handle without causing more pain. Have friends over for very short periods of time. Try to occasionally go out for a short, quiet dinner, or order in pizza to liven up your routine. Let them know how much you care, and tell them that the world will wait while they take it easy and recuperate. Good luck!

 
Old 01-24-2003, 10:50 PM   #4
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Wow and i thought my headaches were bad!! I have chronic fatigue syndrome and sometimes i get headaches for weeks...i feel really bad for you guys with the headaches because i can totally relate! i have been to loads of doctoras asking why my headaches just won't go, they all attribute them to the virus. The headaches are usually accompanied by a slight nauseas feeling and a spacy head...I find that the only way to get any relief is to sleep or lie down in a dark room. I really hope you guys feel better soon! i was in bed for about five months and i thought it would never get any better..but it did and although i still experience symptoms i am almost back to my old self, at the time it feels so hopeless and you honestly think it will never go..but it does, you just have to wait.

 
Old 01-30-2003, 08:17 AM   #5
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How is everyone's headaches? My fiance has good days and bad, but he is slowly but surely improving. Please keep me posted as to how you and your children are doing! Good luck!

 
Old 06-29-2003, 09:14 PM   #6
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I don't know if you want to try this or not, but Tagamet (yes, the stomach medicine) can really boost your system again viruses. And, it's pretty much free from side effects. I searched on the web, and some doctors are using it w/ really good effects for mono, chronic mono (which I guess some CFS falls into that category), warts (caused by the HPV virus), and colon cancer. The recommended dose for adults is 800 mg (4 tablets of Tagamet HB). I'm not sure for kids what the dose would be.

It works because the histamine that Tagamet blocks tells your T4 suppressor cells to come out. These are different than the T4 fighter cells. The suppressor cells actually tell your immune system it's done enough, quit working (some tumours secrete this histamine in order to suppress the immune system). So, without the histamine, you don't get the suppressor cells, so your immune system keeps working hard.

I currently have mono, and I've been taking the Tagamet this week, and my lymph nodes that have been swollen for 2 months are going down.

 
Old 12-05-2003, 01:57 PM   #7
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Re: post viral headache syndrome

I can completely sympathize I was diagonsed with
encephalitis when I was 9 years old. I developed a knot on the back of my neck that has never went away and I wake everyday with a headache that is so severe that sometimes all I can do is crawl (b/c the pain is so intense when I stand.) the worst the headache gets the larger the knot on my neck gets. My neck also hurts all the time. I can't look down or touch the side of my head to my shoulders. I can't even begin to list all the different meds that the doctors have put me on over the years. None have ever even started to prevent my migrane/tension headaches. I understand hydrocodone can cause rebound headaches but if you are in the kind of pain that I am in on a daily basis, and you know for sure that the only way to find relief is through pain medication then what choice do you have?

 
Old 12-07-2003, 07:09 PM   #8
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Re: post viral headache syndrome

My son had a post viral headache for six months when he was 9 years old. The headache was every minute of every day for six months. He had had strep and when it was over he developed the headache. He had to drop out of school but it finally burned itself out after six months. At that time there was nothing to give him for the pain. The doctor said nothing really touches a post viral headache. He was fine for a year and now has had mono since Feb. of this year and is home again. If anyone has any questions re post viral headache, please let me know as we went to many doctors during that time and it was the hardest thing I ever went through with one of my kids. Verla I wonder how your son is doing now as we use to correspond two years ago when our sons both had the post vral headache.

Lynn

 
Old 04-26-2006, 06:05 PM   #9
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Re: post viral headache syndrome

I am a twenty one year old student who had strep through and then developed a chronic headache like your son. I'm desperate for some help and information. If you can give me any advise I would appreciate it greatly. thanks

Quote:
Originally Posted by lynnrlpd
My son had a post viral headache for six months when he was 9 years old. The headache was every minute of every day for six months. He had had strep and when it was over he developed the headache. He had to drop out of school but it finally burned itself out after six months. At that time there was nothing to give him for the pain. The doctor said nothing really touches a post viral headache. He was fine for a year and now has had mono since Feb. of this year and is home again. If anyone has any questions re post viral headache, please let me know as we went to many doctors during that time and it was the hardest thing I ever went through with one of my kids. Verla I wonder how your son is doing now as we use to correspond two years ago when our sons both had the post vral headache.

Lynn

 
Old 04-26-2006, 06:07 PM   #10
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rustyflea HB User
Re: post viral headache syndrome

I am a twenty one year old student who had strep throat and then developed a chronic headache. I'm desperate for some help and information. If anyone can give me any advise I would appreciate it greatly. thanks

 
Old 05-17-2006, 08:23 PM   #11
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eclipse27 HB User
Re: post viral headache syndrome

It all started with "Strep throat" for me aswell. Then things progressed and now i get horrible pain / pressure behind my left eye. Always tired. Dizzy...just feel spacey not like myself. This is the 9th month this has been going on .

 
Old 05-18-2006, 05:38 PM   #12
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rustyflea HB User
Re: post viral headache syndrome

Yeah I'm its getting to the point where ill try anything. What did the doctors prescribe to you for pain relief?

 
Old 05-18-2006, 05:43 PM   #13
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Re: post viral headache syndrome

And what was your Diagnosis?

 
Old 05-21-2006, 06:22 PM   #14
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Re: post viral headache syndrome

Someone please give me information about a post strep throat headache. anything will help

 
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