I know I have been absent on DS for a long time now...and for my oldest DS friends...I have missed you. I was once here daily, several times daily, trying to offer all the informatiin I learned about IH, what I learned works and what doesn't. I discussed the myths vs.the facts, but mostly, it was my intention to offer hope to those who needed it. That all began in March of 2009 and lasted for several years. As some of you know, I was allergic to sulfa meds so no go...then in an 8 month period I endured close to 20 therapeutic LP's only to find my pressures returned within 24-48 hours. We always knew I had secondary IH with rare papilledema, but horrific daily debilitating head pain. So even though I live in Rochester, NY....I had VP shunt placement in Ohio at OSU Medical center where research is done on IH. Still the shunt doesn't work properly and after finally seeing a rheumatologist who diagnosed me with Sharp's syndrome or Mixed Connective Tissue Disease...whuch basically means I have a combo of rheumatic diseases or potential for multiple rheumatic diseases including Rheumatoid Arthritis, SLE (Lupus) and/or Sjogren's syndrome AND I have Fibromyalgia. According to NY State law, if a NS from out of state did your shunt surgery than you must see that same NS for follow up care due to liability concerns. So my care fell on my PCP's lap who was told to just control my pain. So he placed me on Dilaudid and a Fentanyl patch with a written care protocol for my care should I end up in the ER. Then last year, unexpetantly my PCP passed away. The ER threw out his protocol and the nurses began gossiping about how there was nothing wrong with me because my MRI's were normal and told me I was a drug seeker who didn't know what 10 out of 10 pain was. A new PCP took over the practice...his first practice....wrote me down as having hydrocephalus! The first visit he cut my Dilaudid use in half....no weaning down. Then, after not having a period for five months my gyno placed me on Progesterone...everyday I got left sided chest pain which worsened until it was down my arm. The nurse sent us to the ER for an EKG...the doc didn't know what IH was...my EKG was normal and when we left the diagnosis was somatization disorder/conversion disorder or in other words hysteria. The next morning my PCP called 1st thing and called me a drug addict-even though I saw him every 30 days and never abused my meds). Then I went to my gyno doc who proclaimed I wasn't crazy...progesterone can cause chest pain, blood clots, stroke or heart attack. My Rheumatologist prescribed a new drug, after taking it I lost memory of huge periods of time, slept 2 days straight and all I remember from those days was waking up with SEVERE nerve pain in my right thigh both days...same spot, lasting approx.30 seconds but causing me to scream out. The 3rd day I showered and my left thigh was burning and numb and I had a rash down my left sude. I finally fell asleep, but when my hubby went to wake me @ 11a.m. the next day, my speech was slurred, I was paralyzed, I didn't have any concept of time, know my name or the date and my BP was higher than ever. I had taken myself off Dilaudid after being accused of being an addict, but they said that wasn't rhe cause because it would have been out of my system. An ambulance took me to the ER where without doing any tests told my family that they were sending their paralyzed wife home. My husband refused...so they put me in the psych ward where I spent three days straight with slurred speech, a BP as high as 172/80 (normal for me is 90/60.) I bad absence seizures and epileptic seizures, had to be catheterized and yet was never checked for stroke ir given an EEG! Additionally, I had a stiff neck and horrible head pain. Worst off we were told we REFUSED to leave the hospital. My husband said, "How can I even get her to the car!" Finally they said that they believed the cause of my attack was the new rheumatic drug, yet diagnosis on discgarge paperwork..."conversion disorder". Then my PCP refused to prescribe Fentanyl patches and sent me to rehab...upon rehab evaluation, I was told I was not an addict and therefore they couldn't help me. Then they sent me to a pain clinic who said my disease was chronic and incurable and there was nothing they could do but send me to a pain psychologist who is supposed to teach me pain distraction methods. She told me there is no distractiion for 10/10 pain...and she said we have to first take this conversion thing off your medical record because it's wrong and as long as it's on there "even if you have a heart attack they won't treat you". Being schooled that I am very ill and not an addict my PCP's hand was forced to titer me down off the Fentanyl....but, according to my pain psychologist and other pain cllinics he went down too quickly so now I am suffering nasty withdrawls and pain. I spoke wuth Dr. Katz at OSU....a man I fully admired who said, and I quote, "Well you have to take some responsibility because you accepted those pain meds!" So to sum this all up, I am going to say something I never thought I'd say..."I have lost hope." There is nowhere to go. Many friends have fallen away because they rarely see me and don't know how to help. I feel like a ball and chain to my family and must daily keep my fairh in check...look toward being at my childrens' graduatuon's, weddings and eventually being a grandparent. If not for that I would have OD'd days ago. No place to go for help and at least 20 more years of suffering without a cure....and I'm only 42! Sorry but depression has finally set in. Praying for the rest of you! Much love...MM3
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