Discussion in 'Fibromyalgia Main Forum' started by moab341, Mar 29, 2007.

  1. moab341

    moab341 New Member

    Sometimes, I think the top of my head is going to blow off, or steam will come out of my ears.
    I almost wish it would to get some relief.

    I don't know what causes it, but it's terrible.

    I've had this on and off for several years...before I knew I have FM, so I'm not sure it has anything to do with it.

    Of course I was tested for allergies and...nothing.
    I drain like crazy during certain months and have to take Claritan even though I supposedly don't have allergies.
    Without it, I am constantly clearing my throat and feeling like I'm going to's so gross.

    What would cause the pressure?
    I take blood pressure medicine, so my BP is under control.
    I don't know what else it could be, so of course this is the place to ask!!! Roni

  2. Granniluvsu

    Granniluvsu Well-Known Member

    Hi Roni,

    I also have had the same problem for about 20 years ago. I have had x-rays (nothing there but some arthritis, etc.), my b/p is high but is under control with meds. Haven't had any other tests for it really and I also suspect I have lots of allergies, as it was in my family. My dad had lots of them and took shots daily for awhile till he got tired of them. Now some of my children have them and are passing them on to their children too. I have not been tested for allergies.

    I also have terrible post nasal drip, some days more than others and feel also like I am going to choke. I take enough meds as it is and hate to add to the colection. Wondering if Mucelex would help that. I did take the generic form for a short while and I think it did help get rid of some of it in the throat but I suspect I need to take it longer and in more stronger doses to really do any good.

    Most of my pain and pressure is more like towards the back of my head and I also have ringing in my ears. So far I have little or no relief even when I complain about it. Parts of my head even feels tender when I press on it. Maybe it just goes along with this FM/CMFP. I read that the ringing can be one of the symptoms. I also would be interested to hear if anyone else has this pressure in the head thing !!! After over 20 years (which has taken me that long to get dxed)it has gotten really OLD !!!)

    Warm hugs,

    Granni (Marilyn)
    [This Message was Edited on 03/29/2007]
  3. Staceymarie

    Staceymarie New Member

    I had it a few years ago really bad then it went away for about 2 years. Now it's back again. The only way I can describe it is it feels like someone has put a vice grip on each side of my head and is squeezing it. It feels like muscles are drawing up on each side of my head....but I'm not even sure if there are muscles on or around the skull??? I hate it....when that happens, I know brain fog is on the way.

  4. monicaz49

    monicaz49 New Member

    As i read your posting im holding my head. I have this nearly every day for well over a year...sometimes very mild..sometimes its so bad i cant think or be social at all.
    I dont know if it its a true cfs/fibro thing cuz i dont hear about it too much.
    As for me i have a CFS diagnosis but also a lyme disease positive test (which my docs dont believe in).
    I posted about this top of the head pressure/swelling pain thing on a lyme site and they said lyme can cause it like a concusion feeling.
    I dont know what it is but its kinda scary. My neuro said they woulda picked up on it during mri but they saw nothing. Maybe cause it wasnt too bad that day? I have no idea.
    Does anything help your pressure. I take Advil but really doesnt do too much. Sorry you have to go through this too.
  5. moab341

    moab341 New Member

    I wish I could find something!

    Thanks for sharing your own experiences with me so I know I'm not the ony one on here with it.
    Sometimes I'd wonder if it was a brain tumor or something, but I've had it for so long I think it would have done my in by now.

    Mucinex is a good idea for the draining....I'll get some for sure.

    As for the pressure...I'll let you know if I find anything that works and I must remember to ask my Doc about it next time I see him!
  6. richvank

    richvank New Member

    You may have intracranial hypertension. I've run across a couple of cases of this before in CFS. I think that what causes it is a viral encephalitis. The immune response to the viral infection in the brain causes slight swelling of the brain, not obvious on MRI, and that raises the pressure of the cerebrospinal fluid, which is confined in a fixed volume. This higher pressure in turn partially collapses the arteries supplying blood to the brain, and that cuts down on blood flow to the brain, producing other symptoms.

    The simplest thing to do to check this out is to have an ophthalmologist look into your eyes and check for what is called papilledema. This is a bulging of the optic nerve due to elevated pressure in the cerebrospinal fluid.

    If it turns out that you have papilledema, then the next step is to get a spinal tap (lumbar puncture). This must be done by an experienced person, because it's important to release the pressure slowly so as not to jam the brain against the spinal column and do damage, as can occur if the fluid pressure is elevated in the head and is released in the spine. They should measure the initial pressure, slowly release it, and also collect a sample of spinal fluid. PCR testing of the spinal fluid for viruses, in addition to the usual things tested for, will tell you if you have a viral encephalitis.

    If you do, depending on which virus it is, you might be helped by an antiviral. Dr. Dan Peterson in Incline Village, NV, has treated several of these cases with some success. Dr. Jose Montoya at Stanford University is just starting an antiviral study in CFS using Valcyte.

    I hope this is helpful.

  7. Gyspydarling

    Gyspydarling New Member

    Glad to know I'm not "imagining yet another symptom". As for going to a doctor, when this symptom hits, I can't get my head of the pillow much less think about going to a doctor office. I just hold onto my head and wait for it to burst open. At least then I would have some relief. I actually just lie very still in a quite and dark room as I would if I had a migrain and try to sleep feeling that if I just go to sleep, this too will pass... eventually....
  8. monicaz49

    monicaz49 New Member

    i had an eye exam but they didnt mention anything like that. But man this pressure gets super hard to take sometimes.
    Have you gotten any feedback on it from any doctors you've seen?
  9. balletdancer74

    balletdancer74 New Member


    Glad I'm not the only one as it's not the most common symptom even amongst people with FM/MPS and/or M.E.

    I told my neuro many years ago that I wouldn't be surprised if I had a brain tumor since my head hurt so much every second of my day for eight years (I'm 32.). Than when the "attacks" (not classic migraines or tension headaches) would hit, I wanted to cut my head off or bang it against the wall.

    I finally had yet another MRI of my brain paying close attention to the pituitary/hypothalamus area, and a very small pituitary adenoma (tumor) was found. With that said, I was told by several doctors that it has nothing to do with my head not convinced of that, but I do know the p tumor does wreak havoc on my hormones!

    I've also had the opthamologist check my eyes (I have to go twice a year - same w/ the mri), and he didn't say anything about my eyesight. And he knows all about FM and M.E. - he's a believer.

    Nevertheless, I'm going to bring up what Rich suggested during my next eye exam. This pressure is unreal. It's a wonder we're all still alive. The head pain/pressure is all over my head though the stabbing pains are more on my right side - more in the back of my head or forehead/temples.

    I found a very good acupuncturist who helps relieve some of the pressure. It's all about finding the right acupuncturist.

    I've now found some twisted relief in knowing that I'm not the only one with this perpetual and debilitating symptom. I've posted about this before on many boards...even headache/migraine boards...nothing...we're all in the dark it seems...

    Here's to less head pain/pressure!

  10. Engel

    Engel New Member

  11. JaneSmith

    JaneSmith New Member

    When I sleep good, I don't get the pressure.
  12. findmind

    findmind New Member

    My DP has this, and it is so debilitating to her; she cannot think or even move, it affects her so badly.

    I used to have terrible "muscle" spasms in my head, even tho' I also have no idea if the head even has muscles. It turned out to be a TMJ problem: I had arthroscopic "cleanout" of debris in my TMJs and the pain disappeared! Gone, and stayed away for the past 14 years now.

    I feel there may be two reasons for the pain and pressure, the viral encephalitis one, and the TMJ one...oh, and maybe there are myofascial trigger points that could be massaged or treated with acupuncture, for relief.

    I feel so bad for you who have this symptom. May each and every one of you find the reason and a treatment!

    There's always hope!
  13. desertlass

    desertlass New Member

    This topic has come up before, and none of us have known what to think about it. It is a "swelling of the brain" sensation, rather than a tight band feeling, so it is a different quality of headache. It is interesting to finally read that this is not just a "sensation" which implies that we don't really know what we're feeling but that there might be something to it. It almost feels as if I were standing on my head and everything had rushed there. I too feel like I wish I could let out the pressure. The crown of my head is where it concentrates the most, and my fibro doc says many of her patients say that. However she has never known why or what to do about it.

    I also get a lot of swelling that could be related to the adrenal glands. I wonder if this all part of the faulty HPA axis, and for this reason, the brain actually does have too much fluid. The cfs description on this website mentions a "concussed" feeling, but there's nothing like having info on how to check for something (eye exam) and what to do about it.

    Now, the scary part is the idea of this spinal fluid pressure release. Have you or anyone you know of actually had this done?

    Currently, I don't think my body is strong enough to handle any anti-virals, at this point. But others might be able to approach the problem from this angle.

    Oh, and I definitely have ringing in the ears, and I don't have hypertension, and take no blood pressure meds, or anything like that. I've checked out the benzodiazepine med angle, and many others have this ringing/swelling, but have not taken these meds.

    Thanks for pointing us in some direction. It is extremely debilitating, because it doesn't seem to be helped by pain medication.


    P.S. I have just finished reading the paper you presented at the ICFSA conference. Thank you so much for coming on to this board. I often copy your posts into a file, since there is so much info to take in.
  14. sues1

    sues1 New Member

    Every time that I read that CF/Fibro was in the patients Head......I agreed,,but in a different manner.

    Pressure in my head fills like a boil ready to pop. I feel that the top of my head is going to erupt like a volcano. Yes, I have some pressure on both sides, but worse is at the top of my head.

    I am short so people like to put their hand on top of my head, I always shriek and they withdraw, but I have more pressure when this is done and my eye sight seems as if it is fading and things start to go out of focus. I feel that I am fainting and legs becomes wobbly and knees start to buckle.

    For the first several years it felt that the right side of my head,(Some what in front of my ear and up) was leaking at times. I would actually put up my hand expecting dampness, and nothing would be there. At a support group meeting I started to explain this and other right away was finishing mine and each other sentences! I could hardly believe that about all was experiencing the same.

    Blessings to all..........Susan
  15. richvank

    richvank New Member

    Hi, WakeMeUp.

    The reason why the problem doesn't show up on an MRI is that the cerebrospinal fluid is a liquid filling a closed cavity. Just a very small amount of brain swelling will raise the pressure considerably. It's too small a change in brain size to be detected by MRI.

  16. desertlass

    desertlass New Member

    I feel exactly what you are describing-- the top of my head is so incredibly sensitive, and I also feel like my vision is clouding-- like I said, as if I were standing on my head and about to black out from the pressure. It feels like the opposite of "lightheaded", so dizzy doesn't really describe it, and vertigo is closer.

    I always used to have extremely dry hair, and live in the Southwest as well. But in this last year I wake up with so much oily fluid around my temples and forehead, and some at the nape of the neck. It coincides with a puffy face, and puffiness around my collarbone.

    I read about a woman who also had this puffiness, weightgain around her middle, anxiety that would wake her up in the night, and a lot of oiliness that for her, would trickle down that back of her throat (ew. poor thing).

    In her case, it turned out to be Cushing's disease because she had a tumor on her pituitary gland-- Wake, did you get that?

    Anyway, there is a lot to think about here, because this is only getting worse for me, and so I will have to let all this info/plus awaiting lab results percolate for a bit.

    well, I guess if I had to have a lumbar puncture to provide a fluid sample for lab testing, it might also relieve some pressure, if it's not strictly an adrenal fluid issue.

    Hmmm. So much detective work...

  17. Ginner

    Ginner New Member

    good info
  18. Ginner

    Ginner New Member

    I am heading to my eye doctor.
    So much good information.
    I am in pt right now.
    order from neurologist, cranial sacral release
    and the pt said
    lets go to water exercises. This is fine, can not hurt at all.. but...cranial sacral release is what the dr. ordered.
    Thanks for this info.
    Frustrated,assertive yet... hmmm
  19. kjfms

    kjfms Member

    Please ask your physician to order a brain scan with pituitary protocol.

    I had daily headaches with pressure from about 2002 until March 5, 2007 when a pituitary tumor was removed.

    I did see one idiot neurologist from 2002 - 2004 who told me every single time I ask for an MRI of my brain -- "Oh Karen you do not need MRI you have Migraine." -- Did I say idiot!!! Sorry I still have issues with this man and I will not even start on the endocrinologist.

    Anyway -- finally in January 2006 I was examined by a very intelligent PA who put a few things together -- thank God.

    We first did a CT and then MRI at my local small hospital. Turns out is was measured by a Tech (I have done a little detective work) from what I have learned the Radiologist just signed off on it did even bother to look at it -- I don't have insurance...uhmmm.

    Was told it was only 3-4mm and could not be the cause of any of my headaches or other symptoms. Wrong...

    I am sorry this is so long but there is a lesson in it.

    Fast forward me going to a free clinic due to financial circumstances and lack of insurance.

    I finally go to have an MRI at a larger facility (where I use to work so I know they are good) in December 2006.

    I was sent to one of the best if not the best neurosurgeons in the state and he specializes in brain tumors which is what a pituitary tumor is.

    Turns out my little tumor was not so little it was in fact 1.3 x 1.1 x 1cm -- I was shocked and the neurosurgeon wanted to know why I had been sent to him a year or so ago.

    Sorry my point is pituitary tumors are very common the diagnosis however is very uncommon. If you feel something is not right stay on your physicians tail.

    Daily headaches and pressure is not normal something is wrong if the physician will not try to find what -- move on find an other to help.

    Oh the real kicker -- no harm, no foul -- no permanent damage.

    Apparently I can't even sue the idiots that let me suffer for so long, had me thinking I had an aggressive tumor at one point, had me in such a state that my physician had to put me Xanax because I was having panic attacks because I had a brain tumor and nothing was being done...yep that is a kicker isn't?

    I hope you do not have a tumor but please talk openly with your physician about this.

    You might also refer them to the Pituitary Network Association for up-to-date information.

    Unfortunately many physicians -- including endocrinologist unless the specialize in it -- are very behind in the diagnosis and care of pituitary patients.

    This is an excellent site for patients too.

    I will keep you in my prayers,

    Karen :)

  20. 139864

    139864 New Member

    For years I was complaining to my GP about this problem
    He would look at me as if i had just told him that the moon was made of cheese ,& would prescribe pain killers .
    I couldn't stand noise of any desciption ,especially loud music .

    Eighteen mnths. ago ,my optician advised that I go to the hosp. .I did & they lasered my right eye immediatly ,the following week they did the left eye .They said I had early stages of Glaucoma .The headaches got a little better .

    Three months later I was barely able to see through my varifocals ,so back to the opticians I went ,he then told me that I had cateracts on both eyes .

    To cut a long story short ,I recently had surgery on my left eye for a new lens ,it was not a success ,!!! I had to go back this week when they injected me with a fluorescent dye ( I looked like a Belicia beacon ! I was illuminated )
    They took lots of x-rays & then told me ...I had fluid at the back of the eye .So now I have to go back in for a day so they can inject steroids into the eye under anaesthetic .
    I go on the 11nth April .It does feel a lot better now ,but still not right ,I cannot look at bright lights

    Good Luck
    Brenda UK

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