It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Headaches & Migraines Message Board

  • Headaches & Pressure

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 08-11-2008, 07:09 PM   #1
    Senior Veteran
    cindys601's Avatar
    Join Date: Jul 2007
    Location: brockton, ma, usa
    Posts: 640
    cindys601 HB User
    Headaches & Pressure


    With so many of you here that are experiencing headaches, I figured I'd share this information for you. I too, suffer from severe head and neck pain. Maybe it can help someone...

    So many people out here that know something is going on with our bodies and doctors just can't seem to find anything wrong. They look for MS, lyme, vitamin deficiencies, lupis among many other things. This is the approach that should be taken from a proffesional point of view.

    But when everything comes up fine, the professional word begins to discredit us. They start labeling our symptoms with chronic fatigue and finally and most frusting is when the say its stress or anxiety. This can be the case too but lets face it, we all have stress in our lives. So they really need to look further in my opinion, to rule out other less common things, before they label us in this way.

    My only advice to those of you on this path, is if you truly know something is happening with your body, and we know our bodies better than any doctor, don't give up hope, but keep searching. Be your own advocate, fight strong, but with dignity.

    Let go of the stress in your life 1st of all because this increases your symptoms. Find something to focus on besides anxiety. Find a good group on the board that can help you walk through your frustrations. This has saved me!! With a clear head, you'll have better luck on your quest for answers!!

    I wanted to share my story here because if it wasn't for another board members post, I never would have known what I know today. Knowledge is a beautiful thing...

    My symptoms began in my early 20's, during the times of childbearing. I bagan having strange tingling that traveled down my arm and leg, only on my left side. I thought I was having a heart attack or stroke. I was going through a traumatic event in life so the dr was quick to diagnose this tingling as anxiety. And I excepted that for over a decade.

    Then the tingling began traveling to other parts of my body. Fatigue just slammed me down. I had a brain fog feeling and was having trouble concentrating and finding words. I had extreme taccacardia, sleep apnea and bowl disfuntion. Then my legs started getting weak. Walking up stairs was horrible!! I thought the fatigue was causing this. other things started happening and a red flag went up that someting was happening. I went to 2 neurologists and my PCP but all of these professionals hit a dead end.

    In the process of all this, I had MRI's and a lumbar puncture. This produced a headach so severe and has stayed with me until today. I became so weak, in pain and the only relief I get is sleep, which that is an unpleasant thing to because of the discomfort.

    I then took out my MRI and started analizing this myself. Advice is to not do this but if I didn't, I would still be in Limbo, getting worse. I noticed my brain was lower than a normal brain. I brought this information to my PCP. He got very angry that I was looking at my own MRI.

    I then took it to the neurologist that orderd the MRI and he opologized that he didn't see this himself because he just wasn't looking for it. He asked me if I was refering to Arnold Chiari Malformation. He was amazed that I had found this and agreed to have radiology take another look. A few days later, he called and confirmed my findings. But he said he wasn't sure if this would cause my symptoms.

    But I had already done my research and yes, it could. I sceduled an appointment at the Chiari Institute in New York. There, they specialize in this "rare" brain disorder. But its really not rare. Its more common than we think. Its just unknown. Doctors don't know enough about this so they don't look for it. While in NY, I went for more tests and the radiologist there who is knowledgable of chiari said they pick it up alot in routine MRI's. But he said alot of the patients he see's going to TCI (The Chiari Institute) have found this on they're own doing research, because dr's give up.

    So I went to TCI and I have Chiari and also a tethered cord. I have begun my journey with my 1st surgery and FINALLY can relax, except my diagnosis and feel validated and know I'm truly not crazy!! Its a great feeling.

    I know this is long but I just want to get awareness out there. If I can help just 1 person, it will be worth it. Theres very little talk on the board about chiari so I figure I'll get the knowledge out there.

    There are so many symptoms related to Chiari. You can find a form at TCI that shows the list. Here are a few...Either way, I wish all of you in limbo answers!! Take Care~ Cindy

    Headaches in the base of your head that worsen when bending, straining, laughing or crying

    pain radiate behind your eyes

    Neck stiffness~ pain radiates into shoulders /arms

    Light sensitivity~ Blurred vision~ double vision

    Pressure in ears~ ringing~ sensitivity

    Difficulty swallowing~ Sleep apnea

    heart palpitations~ dizziness

    Tingling~ numbness~ burning in extremities~ weakness~ stiffness

    Bladder and bowel disfunction

    Fatigue... And theres many more

    I hope this is helful to someone out there!!

    Sponsors Lightbulb
    Old 08-14-2008, 11:07 PM   #2
    horror's Avatar
    Join Date: Aug 2008
    Location: london, england
    Posts: 3
    horror HB User
    Re: Headaches & Pressure

    hey cindy thnks for that ur very kind to post ur own story to give others hope ur an

    Last edited by horror; 08-14-2008 at 11:08 PM.

    Old 08-15-2008, 04:27 AM   #3
    rodney11's Avatar
    Join Date: Aug 2008
    Location: Huffman, Texas, USA
    Posts: 2
    rodney11 HB User
    Re: Headaches & Pressure

    Thank you for this info. I'll will ak my Dr. to review my MRI again. I saw a neuro-opthamologist yesterday and she ruled out intracranial hypertension. There was no pressure behind my eyes.

    Old 08-15-2008, 04:37 AM   #4
    Senior Veteran
    cindys601's Avatar
    Join Date: Jul 2007
    Location: brockton, ma, usa
    Posts: 640
    cindys601 HB User
    Re: Headaches & Pressure

    Hi Rodney~

    Its good news that intracranial hypertension was ruled out. Keep all of your records along the way for every test that gets done. Ask for your own copy of MRI's blood work and anything else they do. Its a helpfull tool if you end up seeing other Dr's along the way. I have a folder which I bring along to my dr appointments and this has saved me from having to repeat tests.

    I hope you get some answers soon!! Take care~ cindy

    Old 08-15-2008, 06:30 AM   #5
    Join Date: Jan 2008
    Posts: 608
    gorgee HB User
    Re: Headaches & Pressure

    Cindy, I share your frustration in trying to find out what is wrong. My doctor feels my that the stress in my life is causing my pain (tmjd, major chronic migraines behind my left eyeball, fibromyalgia, myofascial pain syndrome, temporal tendonits) and my marriage is my stress. My marriage is stressful, most are right? Anyway, I have been treated with pain medications, muscle relaxants, and steroids. I have gained weight since the major battle, Sept 4, 2007, began. I have always had migraines, and headaches since I was a child, and they have gotten worse over the years. Last summer the migraines increased, almost everyday, and then my tmj flared up in September and the pain spread through my body. I disagree with my pcp, there is more of an underlying reason, other than stess. My jaw, the condyles, one is almost gone, and the other one is dislocated. My health insurance will not cover tmj surgery, but, even with the facial pain doctor and the splint to fix the jaw, I still have pain in my jaw, face, scalp, teeth, left eye (it occured to me this morning that this has gotten worse, I am on day 6 straight), and about to lose my mind. Over the last couple of months I have found that covering the eye, with an eye patch, helps a lot. I know I have something more, my doctor has never tested me for ms, lupus, or anything except thyroid and rheumatoid arthritis in my blood. I am the one who pushed for fibro, my whole body feels like a bruise, and I have pain everyday. I am so frustrated, and I am going to find another pcp, I need more help. I was hoping overtime that my doctor would have referred me out to a neurologist, rheumatologist, even an ear,nose, and throat, and I have asked many times, and I have never gotten one. I am nervous and scared about finding a new doctor, but I need more help. I want to feel better, I am only 31. The fibro and eye migraines are killing me from the pain. I am going to look into what you have found. I have had a mri of my jaw, but not of my brain.

    I need more help, and I need a doctor who is going to listen to me. It is so frustrating, and I understand how frustrated you must be. This website has helped me so much too.

    Thank you,

    Old 08-15-2008, 11:15 AM   #6
    Senior Veteran
    cindys601's Avatar
    Join Date: Jul 2007
    Location: brockton, ma, usa
    Posts: 640
    cindys601 HB User
    Re: Headaches & Pressure

    Hi Kassandra~

    It is certainly a very frustrating road when Drs are dismissing your symptoms and not doing anything. I wa in your situation for the last couple of years. We did every test imaginable and STILL drs had nothing to go on.

    At the end of it all, my PCP was saying that in the end, we'll probobly find out it is stress related. I told him that I know my body and this isn't normal And I would not except that as an explanation.

    We all have stress in our lives. Husbands, children and jobs create stress. But only you know your body and when something is not right, you know it. My advice is to find a new Dr. You definately should have had an MRI done since your major complaint is headaches. Sometimes you just have to be pushy and advocate for yourself.

    The one thing that helped me cope during my search for a diagnosis, was to not let any stressfull situations in. Stress does exasperate symptoms for sure, even if stress isn't the cause. My kids hear me say all the time that stress is a waste of my precious time and energy and I need all the energy i can get these days!!

    As far as fibro, I have heard Dr's say that they give this diagnosis when they dont know what to name whats going on. I had one neurologist try to give me a prescription for lyrica. I asked him what he was giving it to me for and he threw the fibro at me. I fired him that day and moved on.

    I'm not a medical expert and don't know enough about fibro and certainly don't want to insult anyone in anyway. But for me, that wasn't good enough. I had a great PCP who stuck with me and said that medications will only mask the problem, you have to find out what the problem is. And in the end, we did finally get answers, thankfully!!

    I hope you can find a dr who is more compassionate to what your going through. Just keep tring until you get someon to listen. And keep using the boards to vent. Its the best medicine in the world!! I'm here if you need anyone to just vent too!!

    take care


    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Could someone PLEASE help?!? Swollen lymph node, headaches, eye tension, ear & nose Stigma Ear, Nose & Throat 1 06-12-2009 11:43 AM
    Sinus inflammation, congestion & headaches thewarrior Sinus Problems 1 04-29-2009 12:56 PM
    Dizzyness & Headaches caz72me High & Low Blood Pressure 8 02-19-2009 12:18 AM
    I get headaches with high B/P and MD doesn't believe me!! CoffyDrinker711 High & Low Blood Pressure 16 12-11-2008 10:45 AM
    Barometric pressure & headaches.. Darianya Headaches & Migraines 32 09-14-2005 11:02 AM

    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off

    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 07:00 PM.

    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!