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About zaks27

  • Rank
    Advanced Member
  • Birthday 12/27/1952

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  • Gender
  • Location
    Spokane WA, USA
  • Interests
    Reading, computer (seem to be playing a ton of Facebook games recently), and enjoying my 3 cats. All my other hobbies have fallen to the wayside due to POTS.

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  1. I know you're stressed--lots of us have been where you are now. Go to the Yellow Pages and look under "lawyers". There should be a few that say they specialize in Social Security Disability. The law forbids them from charging you outrageous fees. In 1997 all they could charge was $2000 max. The fee will be taken out of the award. They will do all the paper filing and fill out most of the forms. They will need you to sign releases for and or provide them with your medical records. They'll let you know when (or if) you need to appear before a judge. They'll go with you to the "court" hea
  2. Yeah, unfortunately true--first application gets a rejection. I received my SSD in 1997 and this is how it went: 1)Rejection. 2)Hired a SOCIAL SECURITY DISABLILITY LAWYER. I can't emphasize this enough. They didn't charge a percentage in those days, but charged a federally stated amount of $2000. Since I had $80,000 coming, it wasn't a big deal. I had to go before a judge--also not a big deal. I wouldn't waste my time with a regular lawyer. Most Social Security lawyers advertise as such. Ask what their success rates are and go from there. Good luck! PS--The $2000 was paid after the a
  3. Hello! Funny as I just had this experience last month. I requested all my cardiology records. Luckily, I didn't have to pay for the records. What did bother me however was how inaccurate the chart was. They said I'd said something I never said. Or they didn't tell me something that was in the charting. Really funny thing was they just keep reprinting the history and physical every visit--even if the physical was different. They made it sound that I had a physical done each visit. Which I didn't. Every visit, except the first, I had no hands on by the doctor--the office nurse took my
  4. I lost a ton of hair as a result of losing over 100 pounds. I've never associated the hair loss with my POTS. I also have IBS with diarrhea. The weight loss was 2 years ago so I guess I can't blame it on that much anymore--although I believe it's what started the POTS. I use Nioxin shampoo and conditioner (specifically for hairloss problems) and take biotin 100mg/day. I thought of using Minoxidil, but my problem is head wide--not in specific areas, although the bang area is hard hit also! I've found the biotin also has helped harden my fingernails too--a bit of a help since they were rid
  5. Hey all! I just saw my PCP yesterday and actually asked him if we should test for EDS and MCAD, as I have symptoms of both. He has no idea what POTS is, but is super supportive--and didn't just say "talk to your cardiologist", which I really appreciated. What he did say was "would it change anything about your treatment if you did know?" Hmmm... Well, probably not. I'd have to go to the Mayo or another POTS savvy institution to get an evaluation of underlying causes. It ain't gonna happen... I do see on a daily basis the effects of my blood pooling in my legs. I don't ever remember my
  6. So, with my physican's approval (I actually couldn't believe how open he was to marijuana!) I got my medical marijuana "license". Since I don't want to smoke anything, I purchased (after the "dispensary's" help) hashish oil. What I do--and only at night--is put a tiny amount on a pill (I use a calcium tablet). Chronic pain has been a daily friend since 1988 (a MVA) my rheumatoid arthritis, and fibromyalgia. I now have spinal stenosis and degenerative disk disease. I haven't found it's done anything to my POTS symptoms and a bunch to help with the pain. Beats narcotics--which I was on for
  7. Well my experience so far is great; Absolutely no side effects, no "high", no worsening of POTS symptoms, no hangover. I took it at about 9pm and it took about an hour to get the pain relief. My head felt a bit heavy with the sleepiness. I got terrific pain relief and a good nights sleep. Dang...why didn't anyone tell me about this years ago... I've been living with chronic pain since the '80s. BTW--the stuff I'm using is actually hashish. Go figure...
  8. Thank you Firewatcher! Great thread. VERY helpful. Thanks again!
  9. Sandy--I would NEVER use the drug anywhere but at home. And in my case sleeping is a welcome state! I did go and get my license for the medical use of marijuana this morning. I met with a nurse practitioner and had to provide her with medical records that verified a legal cause to use the cannabis. I then went to a "dispensary" and met with the staff, who were very knowledgable about what strains of the drug were good for different medical conditions. I ended up choosing a indica strain that was made into a tarry, viscious liquid in the syringe. You place an amount of about a grain of ri
  10. Tearose--You don't have to smoke cannabis. You can ingest it. The "indica" form of marajuana is what you'd want. There are plenty of hybrids and other strains out there (sativa is probably the worst) that will make you high--increase your pulse etc. Advice is never buy street cannabis if you have dyautonomia. If you live in a legal medical marijuana state you can get the indica in the form of a thick, tarry, oil. It comes in a syringe and you place an amount about the size of a grain of rice on a vitamin or any other pill you may take and swallow it. Absolutely no head "high". It prov
  11. Hi all (again), Firewatcher--I did a search on "marijuana" before I posted, and the search returned nothing. I did a search on the topics you suggested and all that came up was your post in 2008 referring to the same 2 topics you had mentioned. Hard to believe it hasn't been talked about in the past several years. Issie--I was on Ultram (tramodol) years ago (like 16 years ago). Worked pretty well actually. Unfortunately I built a tolerance to it. Funny story--I was taking probably 2 tablets every 8 hours. I was in a rush one day (we were off to pick out a kitten at a breeder's home). I
  12. OK--now along with everything else, I was told by a neurosurgeon last Monday that I'm not a candidate for spinal surgery due to my long term use of steroids (thanks Mom for passing on Rheumatoid Arthritis), and chronic pain syndrome ie-fibromyalgia. I have severe cervical stenosis on multiple levels, severe facet disease/DDD/and severe spondylosis of the thoracic spine. I guess he doesn't want his statistics skued if I find I have more pain post surgery. I weaned myself off opioids two years ago. Now my pain is so severe Neurontin isn't touching it. He also told me I'd be in pain for the
  13. I too am sorry for your troubles. As a RN myself, it greatly stressed me to hear that you're being treated in that manner. I have a suggestion that (I don't think was mentioned earlier). What is your diagnoses? Who's your primary care physican? Can you get your records and bring with you to the ER when you go to document your problems? I think if the doctors and nurses saw a current diagnoses and can document an actual disease process, they wouldn't behave in this manner. Have you seen a cardiologist to test your symptoms through stress tests, echo, etc. Remember, by law, any medical f
  14. You know, I've wondered if I have EDS too. I was never offered a blood test. I think next time I'm at my Rheumatologist I'll ask about it. I have connective tissue disease along with tons of autoimmune disease. My mother had some "double joints", and we both have the "velvet skin' the literature describes. I can also pinch quite a bit of skin near the elbow. Pretty stretchy! I also bruise easily, although that could be the predsnisone I take daily. I do wear 40 mm compression hose (and usually wear regular socks over them), and take midodrine every 3 hours. I know when I had my TTT, m
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