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Everything posted by goldicedance

  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
  16. Oh, Ericka......I have been away visiting a sick relative so I haven't had an opportunity to respond. I feel so bad for you. I sure hope you can get some help somewhere. Is there a reason why you didn't go to the Mayo Clinic in Jacksonville. I would suggest that you go to the Mayo's emergency department. That way you can be seen and then referred to the right specialists. As you know I live midway between Orlando and Jax. If there is anything I can do, please email me. Hoping you get some relief. Lois
  17. I have great difficulty sleeping - both falling asleep and staying asleep. I have sleep apnea and use a bi-pap machine. My sleep doctor tells me to rotate sleep aids - ambien CR, benedryl and xanax. Complicating my problems is the awful pain in my neck, arms and back - fibro, arthritis. Oh, how I long for a good quality night's sleep! zzzzzzzzzzzzzzzzz, Lois
  18. Hi, Persephone.... How are you doing? Seems like you have made great strides, including a leap over the big pond lately. My Mayo cardio wanted a hemotologist to look after the procrit side of me. He is really, really, reluctant for me to have this drug. I only get 1 injection once a month (10,000 units-a baby dose). And, that still bothers him! He said it is strongly linked to strokes, heart attacks, and possibly malignancies. He indicated that the Mayo really only gives it to patients on chemo whose malignancies have metasticized. Wonderful! Perhaps you should ask to see a hemotologist? Who oversees your blood work? Good luck! Lois
  19. The Mayo Clinic (Jax) is very very reluctant to give procrit. The hemotologist told me that have virtually stopped giving it to people undergoing chemo except in certain circumstances. They have found the risks too great. Is anyone here on Procrit? Does your prescriber voice these concerns? Last I saw Dr. Grubb (june 2009) he was still recommending it at a pretty strong dose. Mayo will only give it to me if my hemacrit/hemoglobin (I get the two mixed up) is 14 or under. What have been your experiences?
  20. Thought you might find is interesting: New recommendations on vitamin D At the University of Toronto School of Medicine's "Diagnosis and Treatment of Vitamin D Deficiency" conference on November 3, 2009, thirty of the world's leading researchers on vitamin D recommended 2,000 IU of vitamin D daily (the current recommendation is 600 IU). Vitamin D3 blood levels should be 100-150 nmol/L (40-60 ng/ml); the existing recommendation is 30-50 nmol/L. Vitamin D pioneer Dr. Cedric Garland presented data showing that raising vitamin D levels to 200 nmol/L decreased breast cancer risk more than 77 percent. He said: "Breast cancer is a disease so directly related to vitamin D deficiency that a woman's risk of contracting the disease can be virtually eradicated by elevating her vitamin D status to near that level." Recent work has shown that all cells in the body have "vitamin D receptors" to control normal cell growth. Garland presented new evidence that low vitamin D status compromises the integrity of calcium-based cellular bonding within tissues, which allows rogue cancer cells to spread more readily. Vitamin D deficiency is associated with at least 24 cancers, diabetes, multiple sclerosis, heart disease, falls and fractures, psoriasis and many other health problems.
  21. Maisie, How I ache for you.l I am surprised that you are not on any treatment plan. I suggest that you find a PCP who is willing to treat you. There are many informtive articles/research studies/findings here on POTSPLACE. You could bring those articles to your PCP, highlighting suggested approaches. There are certain "primary" meds for treatng POTS-beta blockers, Midodrine, Florinef, SSRIs, to name a few. If your doctor is willing (and he/she should be), the best approach is to add 1 med at a time so you know which med might be causing a reaction, if any. On your part, you need to be willing to try the meds and even put up with mild side effects (example, Midodrine can cause the feeling of itching in your scalp, chills) tha aren't harming you as long as you are getting some relief. Also, you need to keep in mind that waiting until January when you are feeling so rotten is not an option. Moreover, if your appointment is out of state, it is even more important now that you find a local doctor. You can't rely on an out-of-state doctor to treat/manage your POTS. You can't put all your eggs in one basket. I suggest that you may also want to find a cardiologist who is willing to help you. Many cardios (especially electrophysiologists) are somewhat familiar with POTS. Have you had a TILT Table test? A poor man's Tilt table test? That test is extremely important in diagnosing POTS. If you are going out-of-state to the doctor in January, it is extremely helpful if ou can bring findings from the various tests you have had. The tilt is fundamental. That doctor might find it helpful to know what meds you have tried and the results. You need to be really proactive in your treatment. Ultimately, it rests on you to be comfortable with your doctrs and to switch doctors when you are not. The more time you spend in bed deconditions you further (a healthy person who was confined to be) would also get deconditioned. Deconditioning causes lightheadedness, tachycardia, etc. The need to be more upright seems paradoxical because we tend to feel better laying down. Keep fighting, Maisie. The POTS road has many potholes. What works today may not work tomorrow. I have been fighting since 1993 when POTS was rarely mentioned in the medical literature. I have been in ruts and further into POTholes. Let us know how you are doing. We are here to support you. Lois
  22. This is a very interesting question. I am always really short of breath when I walk, go up steps- you all know the drill. I also have asthma. Last year I had a series of pulmonary function tests at the Mayo Clinic. One involved measuring O2sats and HR. I was sure my oxygen levels would be dropping, but that was notthe case. My HR didn't go very high because of the cardiac ablations I have had. At least the test showed that m o2 levels were ok. Have any of you had those tests? Lois
  23. hi....chills, tingly scalp and possible wired feeling are typical. If that's all the side effects you are getting and you are feeling better, that's pretty good - not much to put up with. When I worked, I would tell my colleagues that if scratch my head it is because of the medication. Bck in 1993, the cardiologist who didn't know Pots from pans, put me on verapamil. That did nothing for my high heart rate and, in fact, told me that my heart rate should no keep going up when I stood. He got angry and walkedaway...this was in the cardiac telemetry unit. Typically beta blockers are used for POTS. Lois
  24. I use Provigil. When I get up early enough, I take 400 mg. Otherwise, 200 mg. I could not get it approved by my insurance for POTS. I did get it approved for sleep apnea. Lois
  25. I participated in the clinical trials for Midodrne (Pro-Amatine). I saved an empty bottle bcause I thought it was nifty with its label that it was a clinical trial drug. Sometimes, the drug being tested for POTS is already on the market but being used for something else. I am sure your doctors will be careful. Lois
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