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Date of last update: 10/04/2017.

Forum Name: Headaches

Question: severe headaches resulting in hospitalization

 kayla1201 - Sat Nov 01, 2008 12:51 pm

I suffer from some sort of severe headache. My neurologist does not know what is causing the headaches, but he says they are NOT migraines. There is no particular pattern and no known trigger. They get so bad that I am usually hospitalized for at least 24 hours. I have been in the hospital more times than I can count already this year for this. Usually, if I take Stadol (nasal spray) on the onset of the headache, I can control it. However; there are times where there is nothing that I can do to control the pain. Most the time the pain feels like my head is swelling from the inside out (like it is going to explode). The nerves behind my eyes hurt upon moving my eyes side to side, which tells me that it is some sort of inflammation. A very renouned Neurologist told me I had Behcet's syndrome (which most my symptoms fit). However, upon one hospital stay an Infectious Disease doctor saw me for about 5 minutes and said it was not Behcet's. This has been going on since 2002, two days after a flu shot. I was hopitalized for severe vertigo (no headache yet). While in there, my heart rate fell below 40 beats per minute and I was sent to ICU. I recieved a spinal tap and was diagnosed with viral meningitis. Three other times that year following this I was hospitalized with severe headache and diagnosed by spinal tap with viral/aseptic meningitis. I haven't had another spinal tap since 2003, but the headaches are the same. I am looking for help. My doctors are stumped and I am scared to death to get another headache. The pain in unbelievable. I am open to anything at this point.
 John Kenyon, CNA - Wed Dec 17, 2008 10:58 pm

User avatar Hello -

Behcet's syndrome would certainly be one of the top suspects, based on your reported symptoms. The cause isn't known, but it can often predispose to meningitis (probably aseptic but not viral), which happened already, and most of your symptoms are consistent with a probable diagnosis of Behcet's.

Have you also had any apthous ulcers (oral canker sores) or elsewhere? Any joint stiffness? These are also commonly seen with Behcet's.

I am uncertain what would qualify an infectious disease specialist to rule out Behcet's, especially after a five-minute quick-look exam. It's not known to be an infectious disease.

Increased intracranial pressure is sometimes seen, which not only would help explain the exploding headaches but also the one recorded drop in heart rate which frequently drops precipitously.

If you could get back for a consult with that renouned neurologist I think you might well get on the right track to having this managed. While there is no known cure, so far, for Behcet's, it is usually manageable with steroids. I really feel the symptoms tell the story in this case. I could, of course, be totally wrong, but when a distinguished specialist confirms the impression it would seem to be a really solid starting point.

I hope this is helpful to you. Best of luck to you and please do keep us updated.
 kayla1201 - Fri Feb 20, 2009 9:44 am

Thank you for your response. You asked me if I had oral (Canker) sores. I did at the beginning, but then was given famvir and I don't get them very often at all. I have been in the hospital a handful more times since my last post. All the same type of headache. I have had bronchitis and a sinus infection for at least a month now, which is making the pressure worse. Also, when I blow my nose, the corner of my right eye experiences so much pressure and tears squirt out as well. Is there any test I can do to be a little more certain about the Behcet's diagnosis? I know there is some type of skin prick test. I haven't done that, but when I simply scratch the surface of my skin to itch it, I get red welts that don't last very long. Does this mean anything? I have researched all types of migraines and my symptoms don't add up, except that I often get these severe headaches the day before a front moves through. I will update you again soon.
 John Kenyon, CNA - Sat Feb 21, 2009 2:10 pm

User avatar You're very welcome. If your canker sore problem improved or resolved with Famvir, that may have been a coincidental problem. If that is the case (theoretically for now) then the headaches, as you describe them, also sound a lot like cluster (histamine) headaches, so you may have had several different things going on at once that collectively mimic Bechet's disease. This is one possible explanation.

There is no specific test available in the US for Bechet's, although one research group in India did develop something like what you're talking about, a patch test, which seems to yield reliable results. Unfortunately it's not universally accepted yet and not used in most parts of the world. Instead, it's a default diagnoses by ruling out other things. I'm now wondering if overlapping but unrelated things have managed to look like Bechet's in your case.

One other thing you mention is welts forming when you scratch an itch on your skin: this is normally called dermagraphism or "skin writing" and people who have this phenomenon are actually able to do things like write words on their skin my carefully scratching out the letters. Then they disappear. It's not an especially important sign, but not everyone has this, mostly people with allergies and/or very sensitive skin. It may also have some relationship to a possible Bechet's connection.

I neglected to mention this the first time around, but people of Asian and middle eastern extraction (especially those of Japanese, Indian, Turkish and Iranian descent) are far more prone to develop Bechet's, although some strictly caucasian and Afro-American people have been known to get it too, probably through some obscure ethnic connection. This should be considered in the differential diagnosis.

At this point I am more suspecting you have cluster headache, possibly related to post herpetic infection which caused the canker sores (and those responded to anti-viral medication, making this even more likely). This avenue should at least be explored.

Please keep us updated.
 kayla1201 - Tue Feb 24, 2009 4:53 pm

I was hospitalized yet again this past weekend. A couple of new things happened this time. I contracted a pretty bad case of thrush on my tongue. The doctor thought it was from all the anti-biotics, but the sensation on my tongue began while I was sitting in registration, waiting for my room....before I received the anti-biotics. Also, my IV was infiltrated and my hand is currently full of edema. I have had this happen before, but never this bad. The doctor saw it yesterday and checked to make sure I wasn't developing a clot. I don't know if I mentioned before, but for the last month, I have had extreme pressure behind my right eye. So much that when I blow my nose, tears squirt out of the corner of my eye. I read about cluster headaches, but the area of pain and the length of pain don't really add up, though I am not dimissing anything at this point. I am going to make an appointment with a rhemotologist at Shands Hospital in Gainesville. I also read about Behcet's being more prevelant within the Asian community. I am married to a Japanese man and we have a 10 year old little girl. However, you did mention that this isn't infectious right? The other thing that I think about is the fact that this started in my early 20s and right after I received the flu shot. Also, when I was getting allergy shots, every week that they increased the amount of allergen, I ended up in the hospital. Does any of this raise any red flags at all?
I am at the point where I have no more vein access and I don't want to end up getting a port put in. I will keep you updated as the need arises. I appreciate your prompt responses. They have been very helpful.
 John Kenyon, CNA - Wed Feb 25, 2009 11:47 am

User avatar You seem currently to be suffering from a medical "cascade effect", which is similar to Murphy's Law or just "one of those days." Thrush, and infiltrated IV, and all that on top of another really bad headache. I'm so sorry!

You had mentioned the tear-squirting thing before, which was one reason cluster headaches came to mind. It's still not absolutely ruled out, but other possibilities remain as well.

Speaking of "cascade effect" and weird coincidences, no, Bechet's syndrome isn't infectious in nature, so there's one more really strange coincidence.

As for connection with your flu shot back prior to all this staring up, any connection would be tenuous and doubtful. There was a release of swine flu vaccine back in 1976 that seemed to have been the cause of a number of cases of Guillain-Barre syndrome, but that's a whole different sort of problem. It is, however, a neurological one. It only happened in measurable numbers that one year, and otherwise the chances of developing G-B syndrome (or presumably some other neurological problem) on a routine basis is something like one in one million annually, so that really seems unlikely. Even if it could be proven to be a fact, however, it wouldn't be of much practical use to know it now, as the problem already exists and that's what needs to be corrected. Same thing holds true (only moreseo) with allergy shots. So no, no real red flags pop up from that (yet another coincidence, and you'd be amazed at how frequently, statistically, coincidence will complicate what should have been a simple diagnosis).

Please do keep us updated. I wish there were something more to offer at this point, but so far your doctors will have to continue their detective work.
 kayla1201 - Thu Feb 26, 2009 6:04 pm

I noticed on one of your replies to the person inquiring about cluster headaches that you mentioned that cluster headaches are almost always unilateral. My headaches are usually more worse on one side than the other, but the swelling feeling on the top-front of my head is bilateral. It feels as if the tissue in my head is swelling and both eyes hurt to move them, like the nerves are being compressed. The people I work with can tell when I am hurting and often tell me that they can't understand me when I speak. They say I mumble and act as if I am not "with it." I just thought I would add that, but this week has been good so far :-) no debilitating pain.
 John Kenyon, CNA - Fri Feb 27, 2009 12:00 pm

User avatar Everything is important as a rule, and your more precise definition of your headaches makes it both less likely they are cluster type (although not impossible) and also raises the possibility of something like pineal cyst, a technically "benign" condition that can cause increased intracranial pressure (ICP) which, in turn, can cause some of the symptoms you describe. However, symptoms with pineal cyst specifically are usually fairly constant. There could be something, though, causing intermittent increased ICP, which would result in the sort of signs and symptoms you describe.

I'm just glad things are better, at least for now. It would be wonderful if they continued on that way, and maybe that's what will happen, but until and unless you're able to learn what's caused them, you'll probably feel a certain degree of anticipation, which is natural.

No debilitating pain is certainly better than the other kind!
 kayla1201 - Fri Feb 27, 2009 9:24 pm

I have had plenty of MRIs and CT scans of my head. The only thing that is seen is an angioma, which my doctors tell me is of no consequence because there is not leaking and it has most likely been there since birth. Another strange thing that happended before the headaches started was 6 months after I had my child (1999), I had a benign growth grow out of my left ankle. They removed it and I haven't had a problem with it since. I know that doesn't have anything to do with my headaches, but it is just another odd medical procedure under my belt. Back to the cyst, if they haven't seen it in all the films I have had done, then there isn't one right?
 John Kenyon, CNA - Thu Mar 05, 2009 12:41 am

User avatar You may just be one of those people who's inclined to develop new growths that aren't necessarily bad, but may well be useless (like the angioma). Some of these may cause secondary problems at times, however, and the headaches may be related to something in this department.

If the cyst hasn't shown up in imaging procedures then the greatest likelihood is that it doesn't exist. They can sometimes be difficult to image when just starting out, but then they are also unlikely to be causing symptoms, which usually are in direct proportion to the size. For that reason I think it's safe to say there's not one there. And that's good news!
 kayla1201 - Thu Mar 05, 2009 4:52 pm

Well, I got put in the hospital again yesterday. I got out this morning. I was in such horrible pain yesterday. I got to the hospital around 3pm, but didn't get meds until around 7:15. I had absolutely no vein for them to access. I ended up getting pain meds PO, which didn't work whatsoever. The pain ended up spreading into my jaw and the back of my neck. My whole body was red and I was inconsolible. Finally, after shift change, I asked the new nurse to try to find access again. She used a smaller guage (24) and finally found access. When the nurse called the doctor on call (which wasn't my PCP), she refused to change the orders from PO to IV. I was rolling around in pain with ice on my head. Finally, after the nurse called on my behalf 3 times, she changed it and I finally got relieve around midnight. She said the MRI showed total blockage or opacification (I think was the word) of my right maxillary sinus. This is getting ridiculous. I have had surgery on my sinuses 6 different times. You would think that would be enough. Does that mean I have some kind of sinus disease? Anyway, she released me today on Leviquin (500mg) and percocet as needed for pain and didn't release me back to work until Monday. That is the latest update.
 kayla1201 - Tue Mar 17, 2009 6:54 pm

I was accepted to Shands Hospital (University of Florida). I am going to see a Rheumatalogist there on May 15th. This is to rule out Behcet's once and for all and to either be diagnosed with something else, or be referred to another specialist there. I will let you know how it goes.
 kayla1201 - Mon Jul 20, 2009 9:21 am

It has been quite a while since I have updated my condition on here. This has been the worst year I have had since this started in 2002. However, the Friday of Memorial Day weekend, I was taken to the ER and they performed a lumbar puncture. This was my 4th tap since this whole thing started. The doctor did a terrible job performing the tap and I felt pain during this procedure that I have never felt in my life. Shortly afterward, I had such a severe headache that I couldn't sit up. I was misdiagnosed 3 times with regards to this particular headache. The following Tuesday I was given a blood patch, which fixed the spinal headache immediately. The strange thing is that I have not had a single headache since then. That was the end of May and it is now the end of July. It makes me wonder if I have had a SLOW leak in my spinal fluid the whole time. The headaches did not start until after my very first tap. I don't want to get my hopes up, but could this nightmare finally be over? The change in weather does not even affect me anymore.

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