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Thread: Hello friends,

  1. #1
    New Community Member
    Join Date
    Apr 2008
    North of Tampa

    Default Hello friends,

    Dear friends,

    I hope everyone of you is doing as well as possible. I know things change for everyone, some for the better and some not so much and of course that affects all of your loved ones. Like you, I don't post here looking for pity which is totally useless at best and at it's worst harmful to relationships. Who the hell wants to be around someone who pities you? You need encouragement. Things can and do indeed get better. Sure, we all have our setbacks.

    Briefly, for those of you who are unfamiliar with my condition I suffer from spontaneous intracranial hypotension. My first symptoms occurred sometime the third week of October 2005, totally out of the blue. Prior to this I was 100% healthy and working full time. Fortunately, I was diagnosed correctly after I think three months. Currently my normal, constant, daily, headache pain from my CSF leak is 7-8 on the pain scale. At 9 I need Oxycodone for relief. That one point decrease makes all the difference in the world between functioning and not. Sometimes, frozen gel packs wrapped around my head and laying down alone help.

    Usually, I can sleep okay with two gel packs wrapped tightly around my head and my bedtime sleep medications. It's not uncommon for me to wake up as often as every two hours to pee and get fresh ice packs during the night. Rarely do I get as much as six hours of sleep in a row. I take a daily nap of one to two hours, always with two ice packs on my head.

    I haven't driven in years. My only outings are being driven to doctors appointments. I try to male myself useful around the house and keep everything neat and clean so my wife has less stress. I've been on SSD for several years as I am obviously unable to work. Tinnitus is my constant companion. I suffer from chronic fatigue. Any amount of stress wears me out. Just living is stressful enough. I have to get away from any discord ASAP. I can only stand for a few minutes at a time. I can sit for only a little while longer.

    How about some concrete, real-life experiences you can probably relate to? Over the past year I have had three ambulance rides to be treated for health issues. The first one it turned out to be a kidney stone which was in the process of passing from the kidney into the bladder. Passing the stone during the process of peeing was not at all as bad as that kidney to bladder pass.

    The second trip occurred after some three months of severe abdominal cramps and horrendously awful bowel movements. The initial symptoms came upon me suddenly with no apparent cause. When the issue did not get resolved after some 10 days in which I had lost my appetite entirely and lost about 16 of my 160 lbs. I made a doctor's appointment. By the way this is not the kind of weight loss program I would recommend to anyone.

    My Internal Medicine Doc scheduled me for my first ever up the butt, colonoscopy exam. The two day, at home, colon cleansing prep, especially drinking the mag citrate was horrendous. He performed the exam himself a few days later. He is also one of my best friends. After I was wheeled into the procedure room I asked him "Is this because I called you a pain in the *** ten years ago? I thought I apologized for that?" He just smiled.

    The next thing I remember is waking up in the recovery room. The exam revealed i have a tortuous colon. Basically, my colon has a few more twists and turns than a normal colon. I felt better for about ten days.

    Then my symptoms came back with a vengeance. Finally, during the penultimate episode in the middle of the night I managed to crawl into the bathroom with the help of my wife where upon she says I explosively passed a huge amount of feces, fortunately into the toilet, and passed out and slumped to the floor and my heart stopped beating for about twenty seconds. This is what is known as a vasovagal syncope response . Unfortunately, I guess since I wasn't out long enough to have a Near Death Experience (NDE) like I had during an injection for a stress test in 1996 at my cardiologist's office. (Read a book like "Heaven Is For Real" or Kenneth Ring's "Life at Death" for insight.) This time I only remember going in and out of consciousness as I lay on the cold tile floor waiting for the EMS crew to do their thing.

    I was discharged from the hospital after about three days and having every exam warranted under the circumstances, including an esophogogastroduodenemoscopy (EGD), basically an upper GI exam. I do not know exactly what the diagnosis was. Partly, I have narcotic bowel syndrome and I think there was some enteritis. I had been in the process of cutting down on my Oxycodone, anyway. I'm taking 7.5 mg. every 8-10 hours. That's down from, I think from 30mg every six hours when I first got sick. I'm back up to 152 lbs. from the low of 142.

    Tuesday of last week after unwittingly running myself down trying to do too much and lack of sleep I had some sort of mental breakdown where I felt I had no control over my mind or body. I just couldn't stop my mind from racing wildly. I couldn't respond to anyone's questions coherently as I lay curled up in a fetal position on the sofa. I was drooling, and snot was running uncontrollably out my nose. I thought I was having a stroke or CSF was leaking from my brain. The beginnings of this episode actually began a few days earlier and became worse so slowly I simply couldn't see this consequence coming.

    The EMS guys were asking me what was wrong and I either laughed at them or screamed profanely that I was not qualified to provide a diagnosis. I felt like some horrible, evil, entity had invaded by mind and body. When I got to the hospital I was laughing and crying uncontrollably at the same time. I would have been better off just being unconscious. Fortunately, after a few hours and I think some Ativan I was calmed down enough for my wife to bring me home and I collapsed into bed for I don't know how long. Crazy, huh? I am now in the process of writing a follow up post. I just want to let you know I am resting in bed very much better this morning. Love you all - b

  2. #2


    Hi Bob! Good to hear from you. (This forum is quiet now.) Wish you felt better.
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

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