Weird Head Feelings

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Sep 20, 2010.

  1. greatgran

    greatgran Member

    Wondering how many of you with FM/CFS have weird head feelings.. I have thought it was sinuses but it isn't. I know it has something to do with this darn dd.

    I feel off balance, just weird in the head and can't describe it.. It may last for weeks and then come and go. My vision is also blurry.. Have had test, doctors haven't a clue.. So tired of putting up with this and not knowing .. Some say anxiety but don't think so. Its not brain fog, I have that but this is different. This is more disabling than a lot of my other symptoms..

    Thanks and God Bless,
  2. gapsych

    gapsych New Member

    No wonder you are anxious. Your symptoms are very worrisome as well as disabling.

    Maybe it is time to get a complete workup by an MD and not an ND?

    Even if nothing is found at least that should reduce your anxiety.

    Sometimes our bodies need something to stop the vicious cycle of anxiety as it tends to get worse over time and takes a life of its own.

    Take care.

  3. greatgran

    greatgran Member

    Thanks, I have had workups by MD that is why I went to a ND.. Still no answers, except its part of cfids/fm..

  4. Callum

    Callum New Member

    ... and I find that it will often go with the ebb and tide of a flare that is induced by outside sources rather than internal. That's vague. I mean, if I push too hard, maybe do way too much one day, I won't have that strange head sensation accompany my flare. However, if I'm around people who are fighting colds, or it's allergy season, or some outside agent is causing my flare, then I will get that strange head feeling. And it's never at the height of the flare, so it wasn't easy to connect the two. And like you, my doctor tried to rule out sinusitis, and I had an MRI, and everything was perfectly "normal". I wonder if it has to do with the inflammation that can accompany the DD?

    Best of luck finding your answers!

  5. greatgran

    greatgran Member

    Not sure but I do think they are connected as I have had this since the beginning of the DD.. This was one of my frightening symptoms. Inflammation of the brain, maybe.. Like you all test were negative. The only thing I have found that helps if any and that is a decongestant nasal spray, now figure that out..

  6. LadyCarol

    LadyCarol Member

    I get the same symptoms, it's part of M.E., it affects the head in particular (the body follows in reaction to the state of the head) and it tends to go through phases/cycles where it's worse for x period of time and then eases for y period of time and then comes back again. I've found a lack of quality sleep tends to make it occur more frequently but even with quality sleep it can still occur the next day if that's where the phase/cycle is at.

    The doctors don't know the cause and medical science currently only offers a very limited understanding of cognitive issues like those which accompany M.E. sufferers.
  7. LadyCarol

    LadyCarol Member

    What medications are you taking (if any) ?
    They can sometimes be contributing factors.
  8. greatgran

    greatgran Member

    I take very few meds.. Nothing new.. I take Vit d3, multiple/mineral vit., fish oil , and xanax prn.
    also vit.c, potassium and magnesium and grapeseed extract.. Been taking all these for years but this darn head feeling started with my first symptoms of cfs.. I still think the two are related some how. The strange part is sometime a decongestant helps..

    I think the CFS triggered my head/sinus/ ears and feel there is a connection. Going to a new doc on Mon. (the one I had has moved) so we shall see what she has to say and I hope I don't get that look.

    Don't think its anxiety because the xanax doesn't help.

    Thanks and God bless,
  9. LadyCarol

    LadyCarol Member

    Were you taking xanax prior to these symptoms starting ?
    xanax can cause blurred vision, balance problems, fuzzy head etc.
  10. greatgran

    greatgran Member

    Had the symptoms before xanax. That is one reason I am on xanax is because of these symptoms.. I do have a doctor's appointment Mon. will try once again to see if I get that look or maybe they will listen.

  11. msbsgblue

    msbsgblue Member

    Yes, I have exactly those feelings in my head. Not brain fog, and yes with my vision too, but nothing that shows up in an eye test.

    I hate it.
  12. mjj3

    mjj3 New Member

    Just wanted to resond that I also get these wierd feelings in my head and one of my first symptoms was blurred vision and headaches even went to an eye doctor first. I have been to regular doctor, eye doctor, neurologist, rheumatologist had MRIs done nothing dx with fibro. During flare or when don;t get enough sleep these feelings are worse and some days better but never have ever fully gone away.
  13. gapsych

    gapsych New Member

    Hope you are feeling better. When you can, let us know how your appointment went.

    Take care.
  14. greatgran

    greatgran Member

    Thanks to everyone for you replies.. I wasn't able to keep my doctor's appointment Mon. just didn't feel well enough to go.. The last doc I saw, which I would still be seeing but he no longer takes medicare, said its just part of a cfs/fm flare..

    I have gotten lots of rest and had a fairly good weekend . The head thing isn't as bad but know only to well it shall return so guess will chalk it up as one of the darn symptoms of cfs/fm.. I still want to rule out lyme completely as my test have all come back negative but most of the time they do. I was hoping this new doc would help me with the Ignex (sp) test. I did make another appointment in a couple of weeks..

    Thanks and God Bless,
  15. Spacey

    Spacey Member

    Hi there, I have blurry vision and dizzynes with my balance off kilter all the time. Iv'e had it everyday for 5 or 6 years. It is really hard to live with. This is the toughest symptom of all for me. Iv'e had every test and seen every Doctor there is, with no explantion. Do you get a lot of pain in your face, neck and head? Also weird sensations in you head? I do.I find when it is really bad, my legs get really affected, like they feel really heavy and spasmy. It is not caused by any medications, since I had this badly before I even had any medications. I have to be careful walking around , since it feels like the ground is moving, and with the weird vision, just makes it worse. I hope you don't have it like I do. Good luck Spacey
  16. gapsych

    gapsych New Member

    Been there, done that about not being able to make it to appointments. I didn't even make it to my first scheduled sleep study as I was too tired. Just using the phone to cancel wore me out.

    Your doctor may be right about it being just (what????) the FM. However, I have had two health issues that I chalked up to FM.

    It's frustrating when it conflicts with other conditions that have the same symptoms. It's really difficult to sort out.

    [This Message was Edited on 09/28/2010]
  17. maps1

    maps1 Member

    I had the same symptoms for years getting progressivly worse.

    MRI last september showed severe white matter disease, it may be worth getting checked out.

    Good luck, hope you get to feel better
  18. Sacajawea2

    Sacajawea2 Member

    Hi GG...
    I asked you if you'd had one and you said no (this must be a different thread though, didn't see it). The reason I mentioned it is because along with sinus pressure and pain, weird head feelings and headaches, I discovered that when the docs did a tap on me that I had a lot of excess spinal fluid that they had to drain. I didn't seem to fit anything, they were boggled as to why the spinal pressure was so high. When the doc was draining the fluid she said I would probably feel better...I always felt like I was being COMPRESSED, even in the neck.

    I didn't need a shunt or anything like that and it was a total surprise to get relief from some of that misery. I wonder if there is a test they can do to check spinal fluid, like perhaps an mri...but you did mention you had no pain. Is any of the pressure in the back of your neck or do you have difficulty sitting upright?

    I was also later diagnosed with Spinocellar Ataxia 3, a genetic disease but they didn't think it was related to that. Who knows. I still have symptoms severe enough to keep me flat for long periods during the day and I have to believe it's from the CFS/FM. I'm not being treated at all for that right now, they just concentrate on the SCA3 and my spinal issues. I am going to find my report on that spinal tap and see what it said. They can also test for lyme in the spinal fluid. I certainly wouldn't recommend a tap if you didn't need one...but if you're losing balance, dizzy and have tremors, ask your doctor if it could be related. I had the tap to look for ms and the genetic disease and that was just a benifit I didn't expect! I haven't thought about it in a long time but now wonder if it could be an issue for me still since I still can't sit for very long.

    Either way, I hope you can take comfort that despite your anxiety and depression, look around here and be reminded that it's very real. You're not causing it. I never had anxiety until about a year and a half ago (had the spinal tap almost five years ago) and now take xanax at night myself. The anxiety isn't so bad now but the best thing was it helped my bladder (IC).

    And my sinus issues have never been that extreme again. Weird, I know...wonder if anyone knows anything about it.

    Take care,
    [This Message was Edited on 09/28/2010]