Increasing Head Pressure & Dizziness has me scared

Discussion in 'Fibromyalgia Main Forum' started by rhythm, Feb 7, 2010.

  1. rhythm

    rhythm New Member

    I'm a 55 yr old male suffering from CFS for close to 4 years. The main symptoms - no energy, feeling fluey, etc. - have gotten steadily worse every month... I'm close to bedridden.

    But in the last 2 months, I've felt more dizzy/woozy than ever, and I've had frequent pressure headaches, the kind where your brain feels to big and is pressing outward against your skull, whereas I never had headaches before. Plus nausea and salivating, also new symptoms.

    So I've has some fear of brain tumors, etc. Regular tests (blood, urine, etc.) all negative (as always). Any thoughts appreciated
  2. WendyC

    WendyC New Member

    I too have been there as probably most here have been. When I am flaring I do notice an increase in dizziness/lightheadedness. Drink lots of water. We have issues with blood volume and an inability to stand for any length of time. Headaches also are a symptom, for me later in the illness. If they are migraines and your headaches could be atypical migraines, CoQ10 will help to keep them at bay. Are you seeing a doctor? Have you tried any of the supplements or protocols listed here? I will check back with you tomorrow as I am too sick and weak to post right now and need to go to bed. A few supplements that I would recommend would be B12, Mitochondria ignite and fibro energy as well as Immuplex and probiotics, one every day. Also cut out all refined carbs, sweets, sugars and no fake sugar supplements. Eat healthy and fresh. Olive leaf extract is an excellent anti-viral and anti-biotic supplement. I would start slow, one at a time and gradually build the dosages. Our bodies are very sensitive and can't take too much. Reach out to Richvank, he is a wealth of knowledge and very kind.

  3. spacee

    spacee Member

    There is something called the Chiari Syndrome at the back of the skull that gives CFS like
    symptoms BUT is fixable with surgery. I had my skull checked out but I didn't have it but some have...particularly that pressure feeling. It could be the blood volume.

    I think with low blood volume the trick is to not drink a lot all at once cause it can flush the good things out but to sip on it over the day. And some people tolerate gatorade for this but I do not. Get palpitations.

    Wendy has great advice. Only think I would comment on is that I couldn't tolerate Mitochondria
    Ignite but that doesn't mean it won't help you.

    Wish you better health!

  4. Nanie46

    Nanie46 Moderator

    You may have a chronic Borrrelia burgdorferi infection and/or Bartonella.

    Many people who had a chronic fatigue syndrome diagnosis, later found out that the CAUSE of their symptoms was borrelia burgdorferi and common coinfections like babesia, bartonella and ehrlichia.

    Here are some links you should read carefully...

    Look at the symptom list on pages 9-11, and the coinfection info on pages 22-27 of this expert's paper....

    There is a lyme board here. There is also a very active lyme board at where you can use the Seeking a Doctor board to find a Lyme literate MD (99% of Dr's are not lyme literate). also has a great Medical Questions board.

    If I were you I would find a Lyme literate MD and get a good thorough evaluation.

    If I were you I would also get a western blot IgG and IgM, test #188 and #189, through Igenex lab in

    Any regular Dr will order a "lyme test", see a negative result, as most are, and tell you that you don't have lyme for sure....which is WRONG.

    Lyme is a clinical diagnosis based on history and symptoms, not a lab test.

    I would also get tested for bartonella. There is more than one strain of it. It can be transmitted by cats, ticks, etc.

    I only had a fibromyalgia diagnosis for 21 years before I figured out on my own that the cause of my symptoms was chronic happened to alot of others here also.

    Hope you get some answers!

  5. rhythm

    rhythm New Member

    Thank you Wendy, spacee and Nanie for your replies.

    Nanie, I did consider the lyme test thru Igenix a few months back, but passed on it due to lack of funds and all the false negatives that come back, and the fact that I never had the bullseye rash or any rashes at all at the start.

    Since it's more symptom/history based than lab-test, I wonder if it's better just to try treating "as if" it's lyme and see if symptoms recede, to determine. I don't know of a lyme-sympathetic doctor in my area (Ventura,CA) but my regular doctor would probably write any prescription I asked if we knew what worked to treat it. Any suggestions?
  6. Nanie46

    Nanie46 Moderator


    I understand the money considerations. I never had a bullseye rash and don't remember a tick bite.

    My Igenex western blot was officially CDC and Igenex negative, but I was lucky enough to have a few lyme specific bands show up as + or IND (indeterminite) which gave me excellent clues to what was wrong with me.

    My Dr's told me it was negative and I didn't have lyme, but I had read enough ILADS info and knew better. I found a lyme literate MD who is helping me recover.

    I would suggest reading as much as you can about lyme, bartonella, babesia, ehrlichia, etc in the links in my first response. Educating yourself about the possibilities is essential.

    I would also suggest going to on Flash Discussion....sign up for free.....go the the Seeking a Doctor board and Post a new topic asking for a LLMD in Ventura, CA area.

    You will receive a private message with names. You may also receive info from people who live in that area because lymenet is a very busy board.

    Many LLMD's do not take insurance but a few do. Some people get reimbursed for their expenses...just depends on your policy.

    Some people do an antibiotic challenge with doxycycline first before having an Igenex western blot. It can increase the chances of positive bands showing up by stimulating the immune system.

    Also go to's Medical Questions board and ask anything you want. You will get many intelligent responses.

    It would be hard for any non-lyme literate MD to properly treat chronic lyme and coinfections.

    They just do not understand what it takes and how to evaluate for coinfections too.

    You can print Dr Burrascano's paper "Advanced topics in Lyme Disease" in this link...

    Read it carefully and take it to your Dr and let him keep it. Do the symptom checklist.

    Ask him is he is willing to give you a script for doxycycline 200 mg twice daily for as long as possible.

    That is double the dose that non-LLMD Dr's would use, but normal for LLMD's to use.

    You may herx on it...symptoms will increase due to die off of bacteria. Then you may start to feel better, but depends on how long you take it.

    A person can herx for a long time before feeling better.

    Read the bartonella and babesia symptoms and treatment info in that paper pages 22-27.

    Babesia is also associated with severe fatigue. Bartonella is associated with swollen lymph nodes.

    If you decide to get an Igenex WB, get test #188 and #189 ($200 unless it went up).

    Call Igenex ( to get a free test kit with prepaid fedex label. Ask customer service how long to take an antibiotic for an antibiotic challenge and how long you should be OFF the antibiotic before having blood drawn for the western blot.

    I think the best thing you can do for yourself is to educate yourself as much as possible and check out your options. If I had listened to any of my non-lyme literate MD's I would still be undiagnosed and suffering so much more.

    I can give you many more resources if you want more info.

    Take care.
  7. WendyC

    WendyC New Member

    Hi Rhythm,

    I really would work with my doctor to rule out all other causes of your symptoms. No everyone gets the bullseye rash, I live in Ct and know of a few people who never had a rash, tested positive but still had lyme. Tests are not 100% accurate but the treatment is simple. Antibiotics for a long period of time if you have been sick with Lyme for this long. Many doctors in Ct now treat for symptoms not the test because the test is not accurate. Be aware though that you will get worse in the early treatment, this is called herxing (herxheimer effect?) because of all the dead pathogens and toxins released. Some doctors pulse the treatment (1 week on, 1 week off or three days a week etc) there are supplements to help the herx too including cholestiramine (sp?). It is essential that you work with a knowledgeable, compassionate doctor. Also blood work for B12, Vitamin D, in fact a full lab workup if possible for all vitamins, amino acids, liver and kidney and endocrine I think are very helpful.

    Most with ME/CFS have multiple deficiencies and endocrine, immune and neurological issues. Once those are discovered and addressed ONE AT A TIME, with small dosages gradually increasing as you can tolerate, then you might find some relief. I did antibiotic and anti-viral therapy and continue with supplements. I work full time and have something of a life, though not the same stamina or energy as before.

    Remember, we are not what we do for a living or even for fun. We have souls and our capacity for love and compassion, I believe is the root of our identity. I say this only because I remember the grief I had at loosing 'me'. But I never did loose me, I just had to rediscover, as an adult, who 'me' really is. Don't loose hope or heart. You will find who your true friends are and that is o.k. too.

  8. nah.stacey

    nah.stacey Member

    I post something along this line in January. Mine comes with the imploding pressure in my heart too. I copied what I wrote below, is it anything like this????

    You might want to see if you can try a sinus medicine that decreases the pressure in your sinus cavity, it may take some of the pressure off your head. Crazy as it seems, it can be a weird type sinus infection, or at least my Dr. told me (not in those words, more technical)

    Does anyone have a rotating virus like this?????

    Every 4 - 6 weeks I get a viral attack that sends me to bed for a week or more.

    For instance..

    My hubby and I went to the movie on Jan 1st. I knew I shouldn't have gone, I could feel something creeping in. I couldn't let him down AGAIN. He finally had a day off after days and days of 12 hour shifts and he wanted to see Avatar.

    I sat through the movie just gritting my teeth, trying soooo hard not to jump out of my skin.
    When the movie finally ended I told my husband "Run, get the car and I will meet you out front, just GOOOO." Sounds dramatic but let me tell you the rest.

    We drove home as fast as we could and luckily it wasn't far. I flew upstairs swallowed 2 1/2 10/325 Percocets and threw myself into my luvsac and just wailed with pain. I felt like my brain and heart were going to explode. My head was on FIRE and my eyes felt like they could burn a hole in whatever I looked at. My husband put a cold washrag on my head and tried to help me through the worst. It took an hour before I could quit wailing and bring it down to a hard whimper. He tried rubbing my shoulder and I had to yelp and tell him not to touch me till the worst had passed. The fever lasted for about four days and a cold wash rag and ambien were my only salvation. It is now the 10th or whatever and I am just starting to be able to be vertical for an hour or so. If I go down the stairs let in the cat and go back up the stairs, my heart is pounding like it's on it's last beat. I have to lay down until it calms down and the abominable weakness passes.

    This virus has been this traumatic a number of times before but I can't get to an emergency room during the worst of it and if I did they would just tell me it's a virus.


  9. Nanie46

    Nanie46 Moderator


    I thought my illness was due to a virus, but found out 21 years later it was really a bacterial spirochete.

    Borrelia burgdorferi (lyme) is cyclic. The life cycle of the Lyme spirochete is 4 weeks. Some people notice their symptoms increasing every 4 weeks and some don't.

    Many people with lyme have chronic sinus problems.Babesia can cause extreme headaches and head pressure and sweats among other things.

    You should read this paper carefully. Look at the symptom list on pages 9-11. Look at the coinfection info on Babesia, Bartonella and Ehrlichia on pages 22-27....

    My Dr told me at the beginning of my illness that I had a virus and I believed him. He was wrong and it caused me many, many years of suffering.

    This has happened to many people here.

    The other links in my response above also contain helpful information.

    If I were you I would read it carefully. You may very well have a chronic Borrelia burgdorferi infection and related coinfections such as Babesia, Bartonella and Ehrlichia.

    One simple tick bite that was never even noticed can transmit all of these infections and more.

    [This Message was Edited on 02/09/2010]
  10. LadyCarol

    LadyCarol Member

    rhythm, what medications are you taking ?