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zaks27

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About zaks27

  • Rank
    Advanced Member
  • Birthday 12/27/1952

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  • Gender
    Female
  • 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" hearing. They'll also tell you whether or not you have a case. They probably won't take you on as a client if they don't think you'll be successful as they wouldn't get paid. It's hard to get started. The sooner you do this the faster you may get some financial help.
  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 award was granted. No bills from the lawyer before we won the SSD. If a Social Security lawyer isn't willing to take you on as a client, chances are he doesn't think he/she'll win.
  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 pulse and BP. That's all. When I told my PCP about the inaccuraties of the chart, he laughed and said he'd have to reread my chart with his office, as he was sure there were some errors there too. Grrr... Why do we the patients always come out the bad guys...
  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 ridged and really weak Interesting about the gluten connection. I can't believe how the "gluten" problem is so prevalent right now. What's going on? Even Chelsie Clinton has a gluten intolerance! She had to have a special wedding cake made. Geesh--what's in our environment that's causing all the gluten problems?
  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 legs and feet being so mottled red, and "heavy". I really think my condition stems from the inability of the valves in my lower body from functioning properly. Yep--that's what I think is the cause of my POTS (and I'm stickin' to it!) Of course this also effects the lack of blood to the brain and heart (as you all know). It's also effected my vestibular system--dizziness, balance problems, vertigo and the worst exhaustion I've ever felt. Yikes--I'm a mess!
  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 16 yrs. If you're interested in which states find weed legal go to www.weedmaps.com. I was a marijuana "virgin". I grew up in San Francisco--a teen in the 60's and never used or tried the stuff. This, at age 58 is, well, a trip!!! PS: The indica strain gives a narcotic reaction. It's best for medical purposes. I get NO "high". The sativa strain or the hybrids cause the head high and I would imagine shouldn't be used by POTS patients. If you buy weed on the street, you have no idea what you're getting. Just a "heads" up--LOL!
  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 rice on a pill or vitamin tablet and swallow it. No burning, smoking needed. No head high, no increase in pulse or lowing of BP. Just pain relief--and yes--sleep. NEVER purchase marijuana on the street if you have dysautonomia. You don't know what you're getting. Sativa strain would be harmful (IMHO) for us. It's what most people smoke for the "stoned, high" effects. Also some of the hybrid strains would cause problems. I'm a marijuana "virgin". Glad I got over the stigma and decided to try this...
  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 provides pain relief, especially to the nerves in the head, neck and spine. A side effect is it'll put you to sleep! Another way to take marijuana without burning it, is through a vaporizor. By using water vapor (it's heated to 350 degrees in order to extract the THC oil from the buds) you have no smoke--it's like an asthma treatment. I live in a legal state. The regulations are strict. You must bring in medical records from the past 6 months that document a legal reason to take the drug. You are advised by a MD, NP, or PA. I hear in Calif. though, dandruff is a condition!!! The marijuana "dispensaries" here are staffed by folks who are knowledgable about what strains help what medical conditions. Hope this clears up a few questions and misnomers about the drug. Oh and please--remember in some states it's LEGAL. I was a marijuana "virgin" until last Saturday. I grew up in San Francisco in the 60's and never smoked. Just wasn't interested. I have severe pain in my thoracic spine. I got relief Saturday night without other pain meds. I also slept undisturbed for 11 hours. Wonderful! I was VERY happy...and I don't have to worry about lung cancer on top of everything else! And thanks Firewatcher for bumping this thread!
  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 pulled out the container and took my two pills. To my husband's horror, at the breeder's I went into the "nursery", sat on the floor, and stared into space. The breeder evidently thought I was a mental patient and we went home. I later discovered I had taken 2 Ambien... Gee, they REALLY look alike... After that, and currently, I put all my pills into pill holders LOL! BTW--I personally found tramadol as physically addictive as methadone or Oxycontin. I had tried to stop taking it, being told it "wasn't addictive" and found myself in full narcotic withdrawl. Very painful and scary. Hope your doc told you this--don't stop taking it without weaning off! I'm going to call my PCP's office tomorrow and see if I can go up to the maximum dosage of the Neurontin (gabapentin). I believe 2700mg/day is the highest suggested dose. 300mg every 8 hours works for about 3 hours. I don't want to go back on narcotics! (And to me Ultram IS a narcotic!) After that I'll consider the cannabis... We'll see. It's legal and I have nothing to lose (except money). Thanks so much for your replies! Susan
  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 rest of my life--so get used to it. I don't want to begin the narcotics again. No doctor around here will touch a patient on narcotics. I've been seeing ads, and I saw on the Dr. Oz show the other night info on medical marijuana. It's legal here in WA state. I know I couldn't smoke the stuff (lord--who wants lung cancer on top of everything else?) I've never smoked ANYTHING in my life LOL!)--but I heard there are drops you place on your tongue that work well. Has anyone tried this therapy route? Any comments? I'm getting a bit desperate and willing to try anything!
  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 facility has to release your records to you. Just a thought. Take care of yourself.
  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, my arms and legs and feet felt super heavy and they were completely numb. None of the docs in my area do more than the TTT. They wouldn't know the difference between adrenogenic or any other subspecialty or type of POTS. I'm just glad I got the diagnosis--but I'd really like to know if I have EDS too. I have a grand-daughter and I'm sure my son would like to know if this runs in the family.
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