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About goldicedance

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  1. Just wanted to let you all know that Shire Pharmaceuticals has pulled Proamatine off the market in the United States. According to the person at the company with whom I spoke, they are negotiating with the FDA about further testing. The generics are still being sold. I found this out when I ordered a refill of Proamatine and my mail-order pharmacacy substituted a generic after speaking with my doctor. My doctor had originally written the script for the brand Promamatine. What a shame!!
  2. I am one of the few on this forum who have had actual experience with Octreotide. I tried it for about 9 months in the early 1990's under the treatment of Dr. R. Hoeldtke, then head of endocrinology at WV University. He was using Octreotide for some POTS patients and having success with it. I got to the point where I could stand for almost 60 minutes using the poor man?s tilt test while on octreotide. My pulmonologist/internist in DC was hesitant to give me the monthly injection because she naturally was concerned about liability issues. She admitted she had no familiarity at all with Octreotide. At first she had considered having me sign a release. She did, however, have me talk to the manufacturer of Octreotide who convinced her of its safety. I took the monthly injection for a few months following about 4 months of the multiple daily injections. Over the months my blood pressure increased a lot so there were times I waited an extra week or two. By about month 4 I developed a sludgy gall bladder and had to have it removed. At that time I also got my appendix removed?kind of a 2fer with the anesthesia risk. Dr. Hoeldtke seemed a little relieved that I was not angry with him about the crappy gall bladder. At that point, I stopped Octreotide because my blood pressure became rather high and I had a lot of health issues. For the past several months, I was trying Procrit. I had a few and then the Mayo oncologist raised the fear of death with me?greatly increased chance of heart attack and stroke. Mayo now makes chemo patients sign releases if they want Procrit. They are then only considered for Procrit if their cancer has metasticized. I decided that sounded worse than the alternative. The oncologist suggested I try again Octreotide. The oncology department has a lot of experience with octreotide. The beauty of the daily octreotide is it is short acting. He said it can cause cramping (yes, to that one) and sometimes either diahhrea or constipation. Not to mention destroying your gall bladder. Here are some references: http://jcem.endojournals.org/cgi/content/full/83/2/339 http://jcem.endojournals.org/cgi/content/abstract/68/6/1051?ijkey=434b2b37cc1c0a55b86d7e6df093015407a1f2f1&keytype2=tf_ipsecsha So, I will give it a try. Octreotide is terribly expensive ? used to be about $3000 for a month?s worth. Let me know how you are doing with it. Lois ________________________________________
  3. Not so fast.....If you had chicken pox as a child, you don't get chicken pox. However, you can get shingles. Before I got POTS, I did get chicken pox from my daughter. (My pediatrician cautioned me not to have my mother come to "lovesit" while I was at work because of the risk of her getting shingles. That was before there was a chicken pox vaccine. Last year, I received a shingles vaccine which is recommended for us older folk. I am surprised your child didn't get the chicken pox vaccine. When I had the chicken pox, I was age 40. I knew for sure that unless you were so little that you had no recall of anything you would remember the chicken pox. The itch was terrible and you look so miserable. I would be most concerned about shingles. Lois
  4. I use Symbicort and Xopenex Inhaler and sometimes the nebulizer. The Xopenex does not cause as much tachycardia as albuterol.
  5. Interesting topic.... watch Apollo Ono....when he waits for his skate, the camera focuses on him...frequently he is yawning. I don't think he has dysautonomia!
  6. Oh, Ernie... I am so happy for you. What types of rehabilitation did you have success with? You are our inspiration and could be our Poster Child! Lois
  7. I had read that there was a link between endo and fibromyalgia. Lois
  8. Thanks. It is in Rochester. Did they find it useful? Three weeks in Rochester..... Lois
  9. I got diarrhea when taking mestinon for OH, but I don't think this is a common side effect. I've had diarrhea with other meds so I think this is a 'me' reaction. Best of luck if you do take it, David. Mary P
  10. Do any of my friends here know about or actually have participated in the 3-week program? I saw the pain psychologist in Mayo Jax and he strongly recommended it. He said that the program has actually helped POTS people as well as fibromyalgia and of course other chronic disease sufferers.
  11. ANSAR TEST I saw a blurb on net written by ANSAR sales rep. He directed it to doctors and the focus was on how big a money maker it was given the cost of the equipment, skill operating, and space needed. It didn't address the question of what it is used for and how it is used. I just wonder........
  12. don't understand why more of you haven't asked for a trial on octreotide....I took it several years ago. Dr. H seems to be the only doctor in US who is using it for POTS. What a shame.... Lois
  13. I was wondering where Dr. H was. He is quite an interesting person and doctor. Are you going to try Octreotide? It gave me several great months. Lois
  14. Perse: So sorry to hear that you have been in hospital for such a long period. I'm hoping that things settle down. I used Octreotide for about a year (1993-4). I had very good success with it. I did have the GI upset for awhile; that eventually subsided. I eventually stopped because of HBP coupled with gall bladder problems probably triggered by the octreotide. I was using the monthly octreotide with short acting as needed. After I stopped octreotide, I was put on Mestinon and now Mestinon slow release. That also did me in with GI problems...but I'll take that compared to the other problems of POTS. Let us know how you are doing. Lois PS I never understood why so few people tried octreotide-- perhaps it was the cost. I was driving 5 hours to see Dr. Hoeldtke at West Virginia University who was one of the first to use octreotide. Google Hoeldtke and you'll find lots about octreotide.
  15. Babette, Good luck with Mestinon. I applaud your bravery. I take Mestinon 180 TS. I have been on Mestinon since October 2004. I take the TS at bedtime as it seems to irritate my tummy less. It is difficult for me to see how getting up to 30 mg of Mestinon a day is going to make that much difference in how you feel in the long run. I too am training a standard poodle to be my good family dog. He is now 14 months old. I wish he could be my assistant but I have had difficulty with his leash walking - he pulls. I do have him wearing a gentle leader. Feel better. Lois
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