Discussion in 'Fibromyalgia Main Forum' started by meditationlotus, Jan 3, 2007.

  1. meditationlotus

    meditationlotus New Member

    I have this very disabeling condition. Diagnosed by tilt-table test. I have no health insurance. I am helped by the medication "Midodrine", but the company ended their "patient Assistance Program". This generic (not brand-name) medication is sky-high in price, which I can't afford.

    Do any of you who have this condition use compression hosiery to treat this? I have been using compression hosiery of about 7-15 mmhg (offers minor improvement), but read on internet that for neurally mediated hypotension the compression should be 30-40 mmhg.

    Do any of you use the 30-40mmhg compression hosiery and does it help your condidtiion significantly.

    I already do salt, walter, florinef or licorice root. Midodrine 5mg. 3 times per day helps the most. Way too expensive.

  2. AllWXRider

    AllWXRider New Member

    I, kinda failed the tilt-table test. It was called mild diastolic depression. Cardiologist put me midodrine too, but as a vaso-constrictor, I felt really cold all the time. So I got put on regular table salt.

    I was reading a great book on the adrenal glands: Adrenal Fatigue: The 21st Century Syndrome by James Wilson N.D., when a person is under a great deal of stress (like us CFS ppl) the adrenal glands can become exhausted. Its the adrenal glands that use cortisol and adrenaline to increase the heart rate, blood pressure when our body needs it. The tilt table test is a special stress test. The blood vessels need to constrict and the heart needs to pump harder as the table is tilted to 70°. Mine couldn't.

    Craving salt is one symptom of andrenal fatigue, and I do crave salty foods. Salt does help me, but I also have to lower my caffiene, exercise and I take Bio-Adrenals, Vitamin B5 (pantothenic acid) is especially important.

  3. Hope4Sofia

    Hope4Sofia New Member

    Hi Meditationlotus,

    I also did the tilt table test and had a positive result. I have really struggled with it also. I black out often and feel fatigued when ever I'm upright for any lenght of time. My doc calls it Dysautonomia - OH and POTS.

    I also have mitral valve prolapse.

    I am on Toprol XL. It helps but not enough. I probably need to increase the dosage. I haven't tried the hose.

    Recently I have been having other troubling issues including menstrual issues and cluster headaches. The took some tests and my hormones were off.

    I think there's a problem with my pituitary or adrenal glands. Could be thyroid but a get symptoms from both hypo and hyper-thyroidism.

    I'm interested in reading other's input on this subject.

  4. meditationlotus

    meditationlotus New Member

    and other beta blockers, but they made me feel worse. Only midodrine helped. And yes I crave salt like crazy, and if I don't enough, I am EXTREMELY week. I take licorice root and lots of B- vites and lots of ESTER C for my adrenal glands and for stress.

    Bio-adrenal sounds interesting. I will look it up on the internet.

    Hope someone can tell me about the hose.

    I have low thyroid which is treated with synthroid. It helps. Before menopause, I had terrible problems with my periods. Cramping, heaving bleeding, endometriosis. Always I was super weak for two weeks after my period. I'm greatful not to have to deal with it now. But CFS came on strong in my 40's. Made me very disabled. Apparently the change of menopause can really mess with CFS.

  5. labrat

    labrat New Member

    I don't have NMH, but have mild orthostatic intolerance and wore compression stockings-30mm/Hg-that were prescribed by a neurologist at Mayo. These stockings need to be specially fitted to the size of your legs and you need a dr prescription for them. They cost about $100/pr I think. My insurance did pay for them.

    I do think they helped me some. They are hot to wear, but worth it if they help. Check with your doctor if you're interested in trying them. I got mine at a medical supply store. They had to order them because I didn't fit into a standard size. Good luck.

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