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DIXZELAND

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About DIXZELAND

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    Advanced Member
  • Birthday October 3

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    Female
  • Location
    TEXAS

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  1. I have seen Dr Levine and Dr. Suleman, both dx me with Pots. The thing with dr. Levine is that he doesn't see patients on a daily basis such as follow up care. He is a professor and only gives the Pots dx. On the other hand dr. Suleman has been my dr for 2 1/2 years. He also has a degree in journalism and will be starting his own talk radio or talk Internet live site to spread the word about Pots. He is a genius I think. He has 3 offices, speaks at the meetings held once a month in Richardson and devotes all his time to his patients. I don't know anything about the other 2 drs. Good luck!
  2. My own theory agreeing with AZ Girl, is that something underlying is causing the POTS. For me after two long years of battling POTS, my endocrinologist discovered I have Hyperparathryoid disease which can present all the symtpoms that have brought on my POTS. I am scheduled for sugery on my neck to remove the tumor(s) in Sept.
  3. I usually just relax all day and all night with little or nothing to do except watch tv, play a hand held game, crossword puzzles, etc. I take advil, and believe it or not, it actually helps me feel better. Be sure and drink lots of fluids too. It sometimes takes me a week to get better or longer before I can resume light activities.
  4. I have been going through a flare up since this past Tues. And yes, I feel so weak as one of my symptoms. I describe it as having a virus or the flu feeling. For everyday that my body is weak and tired, it will take me two more days to feel better. My heart rate is so high, I am having to use my alternate bp meds to help keep it down. I don't know what triggered my flare up again, but it's terrible. Hang in there, better days ahead as I always say.
  5. I have had POTS for 18 months. Suddenly appeared out of know where. I have all the symptoms above except my bp never got low. It was always very high along with a high heart rate. I have Osteoporosis at age 44. I went to see a new Endocrinologist because I wasn't able to strenthen my bones through meds and injections. My new doctor tested my Calcium, which I told him was always out of range "high", but no one seemed concerned. He test my calcium along with a PTh which is Parathyroid Hormone. And low and behold, it was high as well..I have Hyperparathyroid disease. If you read about this, it has all the symptoms as you described as above. I am not saying that everyone has POTS has this other disease, I am just saying that this is what is causing my POTS. I am going to meet with a surgeon in July to discuss removing my parathyroid gland(s), which ever one has the tumor growing on it. My POTS doctor said this indeed could be the culprit to causing all my POTS symptoms!!! Just thought I'd share, it might help someone else. Parathyroid disease is uncommon and surgery is the only fix. Parathyroid.com is the website.
  6. Hello all! I recently had a blood test in Sept. to check for abn. calcium and parathyroid, it all came back normal. Now, as of last week, both my calcium and parathyroid levels are high. I have to have a bone density test and a Sono of my neck to look at the parathyroids. Also I have to do a 24 hour urine. Anyone gone through this? They say it might be what is causing my POTS. The symptoms for Abnormal Parathyroid are mostly identical to POTS patients. Wish me luck:)
  7. I have had POTS for the past 18 months. I have been determined to find the cause myself. Because I have good insurance, I have persued onward to different specialist with a list of my symptoms. So far I don't have MS, a brain tumor or Renal Artery Stenosis. My next visit will be my Endocrinologist. I was dx with Menopause at age 44 along with Osteoporosis. I am now 48. I have an abnormal AgG titer which is high and a high ANA titer as well. After the Endo, on to the Rheumotolgist. There is something causing this, you just don't wake up one morning with POTS as I did with no explaination. ((hugs)) Dixie
  8. Hi! I just read your post about the patches. Right now I take Clonidine tablets x3 day. Sometimes I only have to take one pill depending on if my bp is normal or not. I was considering using the patches. What mg do you take and how often do you have to change them? Do you get dry mouth from them as well? Thank you so much for your response. Dixie

  9. That's wonderful news! This kind of story gives us all hope. I just posted a topic about "anyone ever gone into remission" and you my friend have answered it as YES:) This really puts a smile on my face. Again thanks, Dixie
  10. I've had my POTS for 18 months now. I may feel better without issues for 3 days at a time but then it all hits me again. Just wonderfin if anyone with POTS truly goes into remission for months or years at a time with no flare ups. I'd like to know the secret if so. I know by now there is no magical pill to take, but somethings gotta give
  11. Just curious to know if anyone uses the support hoses daily. I heard they are very uncomfortable. But if they really work, it would be worth the misery to wear them then to be miserable with the high bp. Thanks for comments!
  12. I always believe that when one door closes another one opens. This might be God's way of allowing him to find another church home with loving support. They need to understand that he is "physically challenged" and to not hold that against him because of his illness. Have you ever thought of him using a wheelchair? I had to resort to that. I didn't like the idea of using one, but after not being able to walk around and being left behind, I decided to use one. God Bless you both and don't give up on finding a new church, it was meant to be:) Dixie
  13. I get these tremors at night too. I can be awake watching tv in bed or sound asleep where they wake me up. Sometimes they are more like "jerking". It could be my shoulders, an arm, a foot, a leg, thigh etc. I just had an EEG done two days ago. They are looking to see if I might have "night seizures". ((hugs)) Dixie
  14. You are not alone. Every morning it takes me about two hours to adjust to getting out of bed. My bed frame is even elevated on blocks to help with the upright position. I take my medication and wait for it to work so that I can just drink my decaf coffee. If the symptoms don't respond, I have a back up pill I have to take. If I'm not careful, my anxiety gets the best of me. There are times that I went completely down hill. Changing medications is what helped me. The doctor trying to find the right one, the right dose. I still struggle though. This illness is not pleasant. POTSY's are unique as a snowflake, everyone is so different but so much the same. Glad you joined our post here. Lots of support because we all care about each other:) Dixie
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