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Concerned about new persistent headache

I posted the message below on Saturday, mistakenly in a support group forum.  Since then, I
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Avatar universal
Sorry, sometimes I'm going back and forth so quickly trying to see if the doctor's forum is open to questions that I don't realize which one I'm at.
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147426 tn?1317265632
Oh, Good!! I'm a bright, educated woman and I did that, too.  With a similar apology.  You're in good company.  I've read your posts a couple times and I have some ideas, but I am out of mental energy tonight.  Let me give you some teasers and then try to discuss what's on my mind tomorrow.

First off, it doesn't sound like migraine to me.  But, I am not a neurologist.

My first thought was that your initial illness might have been EBV (Epstein Barr Virus - responsible for mononucleosis and related ills - of a simialr virus)
Your subsequent illness sounded like a post-viral headache (not uncommon)   Also it might sound like a viral meningitis which in adults is usually not at all critical, but more of a very draining, painful nuisance.  It also can't be treated with antivirals and they use opiod anagesics for it.  

Also EBV can cause various, and usually temporary, neurological syndromes like paresthesias (tingling and numbness) and has been reported to cause onset of Chronic Persistent Daily Headache - a new classification of headache.

I'm out of mental energy  - my eyes will no longer track, but there were the thoughts I had.  By now, you've talked to your doctors.  Hope all is well, Quix
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Avatar universal
Thanks for the reply.  I've seen your name a lot and read comments to and from you.  What is your diagnosis?

Actually, I haven't spoken to any doctors any further yet.  My PCP might have my MRI results tomorrow (Tues).  I made it onto the doctor's forum, but my post was way, way too long (I didn't realize there was a character limit), even after cutting out about half of what I wrote.  Any shorter, and I figured it wouldn't be worth posting.

Meanwhile, I'm much improved relative to the worst I felt through all of this.

I anticipate that the MRI will be negative, and then the next decision is whether to move forward with further testing (like an LP?) or not.  Reading about the effects of discontinuing Effexor has complicated that decision for me, but maybe not for my doctor.

I'll look forward to any further comments you may have.
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147426 tn?1317265632
I'm glad you're getting better.  Time can be a great diagnostician.  I am a former pediatrician now downed by Autoimmune Inner Ear Disease (read that - intractable vertigo) and MS.

About the Effexor.  Withdrawing from Effexor can be formidable, but you were on such a low, low dose and you tapered from that.  I would have a hard time believing it would cause what you have been through.

I'm on Effexor - the normal maintenance dose.  When I tried to come off my withdrawal syndrome was a huge increase in vascular instability - mammoth hot flashes alternating with shaking chills. My sister had the same symptoms when she stopped it cold turkey.  Also I had a resurgence of migraines.  I found later that many docs are using Effexor with great success in migraine suppression and there are reports of it stabilizing postmenopausal hot flashes.

All that said, I think your stopping the Effexor is unrelated to what you've experienced.  What we call in the science trade "True - True - And Unrelated."

Let us know what happens.  Quix
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Avatar universal
I'm sorry to hear that you have such serious diagnoses.  More later about that, I have to leave the house in a few minutes.  My mom has lupus, my older sister has chronic pancreatitis, and my younger sister has a Chiari malformation, so I'm familiar with how debilitating such illnesses can be.

It's unlikely that I would get an EBV from a client with mono, isn't it?, when we sit several feet across from each other while talking and we don't even shake hands (although he's handed cash over to me, so, from his hands to mine).  I got sick about 2 weeks maybe after he told me he'd been dx'd with mono.

One last thing.  Over the last day or so I've wondered if my glands were getting swollen again.  At least, whatever causes a feeling like I'm wearing a tie too tight around my neck.  I completed the antibiotic 3 1/2 days ago.  And how would that relate to a virus??
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147426 tn?1317265632
LOL!   Well, the dogma is that it is spread by saliva and has an incubation of 4 to 8 weeks.  Also at your age the vast majority of adults have already been infected. (that goes to speak of how incredibly contagious it really is, even though "saliva-transmitted" sounds like it would be hard to catch.)  It might not have been that client.  People shed the virus for months to years after infection.  It just sounded like EBV to me.  It wouldn't hurt to have your titers run.

The tight, soreness in the neck may indeed be from swollen glands.  There are cervical glands diffusely throughtout the neck and under the jaw.  When they swell they pull on the neck muscles sometimes  and may give that sensation of tightness.

Antibiotics - Back to EBV, since that is what I based my impression on.(lol)  Often in EBV, other herpes viruses, CMV and related ones, the throat looks so bad that the doc just gives antibiotics.  Sometimes it's hard to restrain one's self.  The other thing that happens is that Strep "piggybacks" on inflamed tonsils of mono all the time (meaning I've documented them both on numerous occasions).  As for recurrent swelling.  If it was a viral infection (and your description did sound online like a post-viral process) the glands may swell intermittently for some time afterward.  The antibiotics would have no effect on the viral process.

Quix

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Avatar universal
Actually, I had mono when I was a freshman in college.  22 years ago.  Along with strep.  Too funny you mention that.  It also sounds like you were saying that once exposed, you're immune to getting mono from someone else.  Were you also saying that the EBV could lie dormant and "fire up" again later?

I never saw my doc for the sore throat and cough I had originally, and by the time I went on the antibiotic (which she called in after I requested it, it wasn't for anything she observed), I'd already been over that for over a week.  Is it just coincidence that my swollen glands and clear drainage cleared up shortly after starting the antibiotic?  I know an antibiotic is ineffective against viruses, and at the time, since it seemed I responded to it, I just assumed I had some sort of bacterial process going on that wasn't obvious that accounted for the swollen glands.  Yet I don't know how that would relate to the suspicion on both your part and my son's neurosurgeon that I'm dealing with a viral infection.

I've got to stop obsessing and wait for my test results and to hear what my doctor advises doing next!  If the MRI is negative and she's at a loss, I'll suggest a titer.  Thanks!
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Avatar universal
Hi Quix: Today I got the results of my MRI and they were normal.  That's good news!

I think that's what my son's neurosurgeon expected.  When he said I should get an MRI right away, he said, "Statistically, this is not very likely to be a structural problem, but that is the most important thing that you need to rule out before working through other possible causes and treatments.  More likely it's a viral infection that will need to run it's course," and when I wrote back and asked him to clarify what he meant by a viral infection, he clarified a "viral infection of the CNS, not necessarily rising to the level of encephalitis, although that's a possibility."

Is that correct?  Would a CNS viral infection necessarily show anything on an MRI?  In other words, I think it could, but am I right in understanding that I could have what he suggested without a sign on the MRI?

I see the internist (not mine but someone filling in for her) tomorrow to discuss what should be done next.  Seems like he should draw blood at the least, and hopefully I won't have a problem when I ask for a referral to a neurologist.  Yesterday evening and today my headache has been at the level of pain I had when I saw my doctor the first and second time and she suggested a migraine.  Still, the tingly feeling seems absent and for that improvement I'm grateful and hopeful.

I said in a previous comment that I was going to ask more about your diagnoses at a later time.  How long have you been ill?  How do they affect your life at this point?  When did you leave your pediatric practice?  Feel free to answer or not answer as you feel like it.

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147426 tn?1317265632
Well, your son's neurosurgeon and I were on the same page.  I think (but am not totally sure) that a mild viral infection of the brain or meninges (encephalitis or meningitis ((which is what I was thinking)) might not show up on MRI.   Certainly when it does it can be seen as an enhancement of brain lining.  Severe infections usally show something, but often we have to look in the CSF for signs of inflammatory celss and elevated proteins, and, possibly viral, cultures.  Your course has been too mild to suggest a bacterial process, but this would be checked also.  The majority of viral meningitis in adults causes severe headaches, stiff and sore neck, feeling ill, light sensitivity, loss of appetite and a whole list of other things.  The headache may persist for weeks after the actual infection is over.  There may or may not be a fever.  If you are clearly on the road to recovery the decision to look farther would be discussed between you.

Yes, EBV has been documented to "reactivate" and cause relapses or what appear to be repeat infections.  Once you have had it, it is not felt that you will be reinfected by another person.  For a long time in the 80's EBV was blamed for frequently causing "chronic mono", but strict measuring of the various antibodies the body makes in response to EBV showed that, though this phenomenon did indeed happen, but was not the answer they were looking for.

There is still a strong suspicion by many researchers that EBV can set up autoimmune responses and plays at least some sort of causative role in Chronic Fatigue Syndrome and Fibromyalgia.  However, this hasn't revealed a direct role of the virus.  Certainly EBV can play real games with the immune system, so they are also trying to examine possibilities of EBV, genetic predisposition and possibly the role of other viruses in addition, in causing more chronic diseases.  I just reread that sentence and it was totally garbled.  I'm getting tired.

LOL. I was wondering when it would happen...I just got flamed by a poster for giving a ridiculous "copout" answer to someone.  I knew I'd set someone off sooner or later.

I'll tell you about my various ills sometime.  Meanwhile here is a link to the post I wrote about my course trying to get the MS diagnosed:

http://www.medhelp.org/forums/Multiple-Sclerosis-Support/messages/23.html

Actually, the vertigo is what limits me most from minute to minute.

Let me know when you do talk to your docs. Jeanne
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Avatar universal
Here is where I am at.  Had a doctor tell me my problems was the result of a post viral infection.

Background: 44 year old male in decent health. Retired from the Army in 2006 and had a complete physical. Everything was fine except for lower back degenerative disk diease and mild hearing loss. Took a contractor job in Iraq. After 4-months, I was sick with extreme fatigue, head pressure, lightheaded and tinnitus. Finished my year there in early 2007 and took a 3-month vacation at home and now am working for the government in Germany.

After getting over whatever illness I had in Iraq (lasted 3-4 weeks), I was left with constant painless head pressure, lightheaded and tinnitus. Saw a couple of general doctors in Iraq and was given prescription pain medication (even though it mostly painless) and was told allergies or sinus or tension headache. Tried the meds with no change with the head pressure. Saw an ENT in Iraq who felt it just a left-over from a viral infection which could take months to heal.

When I came back from Iraq, I had a CT Scan, sinus x-rays and had a chiropractor work my back and neck for a month. The MDs ruled out a sinus infection or serious allergies. They gave me more pain medication (do not take), high BP med (do not have high BP) and a nasal spray thinking it was some type rhinitis or chronic headache. I took 3-months off at home to rest and relax in case it was burnout. Sometimes at night, I feel a painless throbbing in the back of my neck and lower head when it is on the pillow.

Questions: 1) Can a viral infection take months to completely get over and can the head pressure lightheaded feeling be attributed to a post viral infection? 2) Can you develop a chronic headache without any history of headache and have just pressure without pain? The prescription meds did nothing for head pressure.

I am pretty much at a total loss since having this stuff for a year now. Have lived in Iraq, KY and Germany with no change. Have seen 5-doctors who all had different opinions to include rhinitis, tension headache, sinus inflamation (not infection).
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Avatar universal
Hello,

I found this article by browsing the web. I know that this section hasn't been posted to in a long time, but if anyone here has any answers, PLEASE let me know.

My headache started in October 2007 after a really bad flu that lasted 6-8 weeks. I felt terrible. I have gone to 6 different doctors. This last one that I am with is working on it with me. I made a list of my symptoms/problems and this is what I give to the doctor when they ask what is wrong with me:
-----------------------------------
Description of Problem:

Headache began at the end of October 2007. Headache is more pressure like than painful. Headache has an extreme squeezing sensation continually. Pressure is almost everyday but can fluxuate in intensity. It encompasses entire head (base of head to eyebrows). It feels like a giant rubber band around my head. It begin after a sever flu with fever, fatigue, extreme mucus (with blood in postnasal drip), body ache, cough, and phlegm that lasted for weeks. I often feel lightheaded, have a hard time concentrating or focusing while at work, and physical activity intensifies headache and make it feel as though it’s throbbing. It seems to be milder in the morning.

Other Strange Symptoms/Problems that arouse around the same time as headache:

Around November/December 2007 I began to have an extreme allergic reaction to cold temperatures. Going outside would cause any skin exposed to cold temperatures to swell, become red, itch, and burn. Even drinking something cold would cause throat to swell. This reaction would persist for a couple hours after getting into a warm room. {After research I found that this strange phenomenon is called cold urticaria.} This lasted about 2 months and I now do not have it anymore.

Went to the hospital in December 2007 with extreme swelling of the eye after rubbing it. Doctor said that it was the result of an allergy or histamine problem.

I currently still have extremely thick, sticky mucus, especially in the morning, (yellow, green, clear, and white in color) ever since getting the flu in October 2007. Constant clearing of the throat with post nasal drip (more than normal).

After doctor suggested I try diet/exercise to help what he thought to be tension headache, I went to the gym to workout and got really sick (Early February). I felt as if I was going to pass out and throw up. I went very pail. At the beginning of April I have noticed an increase in continual nausea, heartburn, upset stomach (rumbly, gurggly, gassy), feeling full faster, loss of appetite, even a little weight loss. Sometimes I feel like I have a knot in my throat/tightness. Stomach hurts bad! I am unsure if this is even a related issue.

Sometimes eye movement seems not smooth. For example, when reading a book and I look at the next line of text eyes almost “vibrate” for a second.

Treatment/Medication Tried:

• Exercise/Diet – Jogging, working out… all of which does not help
• Advil -
• Tylenol -
• Claritin – Tried both Claritin and Claritin D, no improvement
• Sudafed – 30 mg
• Chlorpheniramine – 4 mg
• Augmentin – Was given this for a suspected sinus infection, but showed no improvement
• Zyrtec – 10 mg for a week, no improvement
• Prilosec – 20 mg (to see if this helped stomach problem, but I still have a stomach ache, pain in the lower left, nausea, and a lump like-tightness feeling in my throat.)

Comments:

Overall, ever since getting this headache I have not felt healthy. I seem to feel ill to the core all the time, just enough to drive me crazy, but not enough for a doctor to diagnose me with anything serious. I feel like I am going to go insane! I never used to go to the doctor!

I have seen 5 doctors and I have been told that I have: Sinus infection, Tension headache, TMJ disorder, Stress, Allergy/Histamine Problem… treatment of all these showed no improvement.
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I am scheduled for an MRI and an LP on the 29th. I really hope that we can get this fixed.

Again, if anyone has any answers or follow up, I would LOVE to hear. THanks,
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Avatar universal
Oh,

Just so you know. I saw this on the news and I am so desperate that I actually am seeing Dr. Singer in Seattle. I think this is what is going on. Please take a look and let me know what you think.

http://www.king5.com/health/stories/NW_021808HEK_persistent_headache_SW.5de6261.html
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Avatar universal
I responded to the message you left for me specifically before reading your post.  (I'm not sure where it shows up, though.)  There seem to be some similarities and some differences to your headache experience and mine.  Just so you know, my MRIs and LP never showed anything.  I think it is good to educate yourself and also find a doctor you trust.  Hopefully you will find an answer to your headache or at the very least become headache free sometime in the near future.  To this day I still don't know for sure if my doctor's diagnosis was correct or not, but I am headache free and otherwise healthy and that's what matters to me.

Good luck to you.
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