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HyperPOTS8

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Everything posted by HyperPOTS8

  1. Joann, you don't mention what your NE levels were, but mine were vary elevated and as with a pheochromocytoma that causes my volume level to be reset at a much lower level, eg my weight would drop qckly from my usual 104# to 97# and I had severe hypovolemia confirmed at Mayo. Florinef and high Na have been a key part of my management because the low blood volume would just cause even more release of catecholamines, ECG changes, etc. i dont know whether that may be the case for you or not. this disorder is extremely heterogeneous. mine also came on in a stepwise fashion as you describe. I went off the meds that were helping me (florinef, clonidine and salt tabs) to get the formalized testing at Mayo, it made me very sick as I suspected it would, but I did not get back to where I was when I went back on my meds--as I assumed I would. Anyways, now that the underlying cause is being treated with the IVIG, I am doing much better. I don't feel sick everyday. I have been able to return to work, from home. I am on the list to see Dr Grubb because as with when I went to London to see the world's biggest expert on antiphospholipid syndrome, there is no substitute for that kind of clinical experience. Please let me know if I can answer any questions Arizona, I started IVIG in Nov at the 1mg/kg/month dose. I get Flebogamma which is one of the lowere osmotic agents so less likely to cause thrombotic complications. I get mine in three divided doses every ten days since I have a hypercoagulable disorder and IVIG is hypercoagulable I have to get it slowly. I am going to be gradually increasing the dose (eg 2gm per dose every 1-2 months) to see if I can get an even Better response because my tolerance for stimulating (eg driving on the highway) or stressful things is not normal and I still have major issues with labile BP, etc.
  2. I have very hyperPOTS with supine NE 1400 and upright 3400. I was dx at age 43, found several months ago that it is due to antiphospholipid syndrome (an autoimmune clotting disorder). Most of my symptoms from this disorder improved markedly with heparin injections and plavix (an aspirin like agent), but not the hyperPOTS. In November, I started IVIG and have already had significant improvement in the pots. I just turned 45.
  3. Kitt, Dr Sandroni at Mayo is the autonomic neurologist who told me mestinon is not helpful in hyperPOTS. Sorry, I did not ask her why.
  4. My autonomic neurologist at Mayo says mestinon is not a treatment for hyperPOTS
  5. I have an autonomic disorder due to antiphospholipid syndrome/Hughes syndrome (APS) which is an autoimmune clotting disorder. This association has not yet been published but is per Professor,Hughes (who first described APS 29 years ago) whom has several other patients with both. The diagnosis of APS is by blood testing.
  6. I had blood volume analysis done at Mayo. But I knew before the testing because my weight dropped from my usual 104 to 97# in just a few days, I would spontaneously diurese what looked like water, 10 gm sodium diet and subsequently florinef helped me greatly, etc
  7. Have you used the salt, water and florinef at the same time? For florinef to work optimally as a volume expander, it needs to be taken with salt and water. I have severe hypovolemia and take 0.2 mg florinef daily and 12-15 tabs 1000 mg NaCl daily and a lot of water.
  8. Tracey, have you been tested for antiphospholipid syndrome/Hughes syndrome? With migraines and loss of vision in one eye and dysautonomia, you should be tested. This can also cause spontaneous metatarsal and other fractures.
  9. Leigh8, Ii knew i was hypovolemic because I was diuresing what looked like water and my weight would drop 5-7 pounds in a matter of a few days, after these episodes, I would then become very sick. My suspicion was confirmed by blood volume testing at the Mayo Clinic (this is a nuclear medicine test). This is not a test that is done just anywhere, however.
  10. Hi Kitt, My supine NE was 1400, standing 3400. I also have severe hypovolemia (by blood volume testing at Mayo) due to the elevated catecholamines. I take florinef and high salt as well as high doses of clonidine (patch and pill forms). I also have antiphospholipid syndrome (an autoimmune clotting disorder) and Professor Hughes who first described this syndrome in the 1980's believes my autonomic trouble is due to APS. I have hypergammaglobulinemia, elevated total IgM, and my APS antibodies are both IgM. I am being tested for antibodies to the adrenergic receptors. Four weeks ago, I started IVIG. Because of the hypercoagulable state, I am getting this slowly. I not yet had any benefit, but it's too soon to say.
  11. Leigh8, since you have lightheadedness with the brainfog, I wonder whether your blood volume is adequately repleted. In order for florinef to work optimally, you have to take lots of salt and fluids,,eg Dr Levine's protocol advises 8-10 gms of salt daily. If you are hypovolemic, then you won't be getting enough blood flow to your brain and will feel light headed and have brainfog. Of course there are other mechanisms by which this may occur as well.
  12. Hi Leigh, I buy mine on Amazon from Consolidated Midland Corp. I get the giant bottle (1000 per bottle), but I would start with the #100 bottle to make sure you tolerate them. Some people get nausea, etc. I have no symptoms, but be sure to drink plenty of water.
  13. You would have to ask your doctor what he means. Food labels report sodium content, not sodium chloride (NaCl) content. I have 1000 mg NaCl tabs which have 400 mg sodium each. I take 12-15 tabs daily plus florinef 0.2 mg daily, but I have severe hypovolemia. The correct amt varies from person to person, depending on the severity of your hypovolemia.
  14. For most people, the BP lowering effect of clonidine is greater than for beta blockers.
  15. Lissy, a positive lupus anticoagulant occurs in antiphospholipid (Hughes) syndrome (APS). This can occur in association with lupus (ie secondary APS) or independent of lupus, ie Primary APS. I have dysautonomia and Professor Hughes (who described APS and for whom the syndrome is named) believes the autonomic trouble in my case is due to APS (although this association has not been published yet).
  16. I have very hyperPOTS (very high NE) and take a high dose of clonidine. I don't have any side effects.
  17. Dopamine is one of the catecholamines, along with norepinephrine and epinephrine. Norepinephrine is the most important as it has been used to define hyperPOTS >800 or 1000, depending on the source. The metanephrines are used to rule out pheochromocytoma. In hyperPOTS, the metanephrines are much less likely to be elevated, despite elevated catecholamines, but in pheochromocytoma, both are usually elevated.
  18. The way they do it at Mayo Rochester is place an IV (since the stress of a venipuncture can be enough to raise your catecholamine levels. They then have you lay in a dark, quiet room for 30 mins, draw the supine values there (norepinephrine, epinephrine, and dopamine), then have you stand/walk around for ten minutes and draw them again (sitting).
  19. Also, just put "dr raj Indian pacing journal" into google and you will find that article. He recs 10-20 mg propranolol 2-4 x daily ie bid to qid)
  20. I noticed a difference in the first 24 hrs with florinef taking 0.1 mg daily. I was not told at first however that it is important to also increase your salt and water intake for florinef to work optimally. I still had some orthostatic tachycardia until I increased the dose to 0.2 mg daily with a lot of salt (I take 12-15 of the 1000 mg NaCl tabs daily) and water. I know I have very severe hypovolemia by blood volume anaylsis, however, so my experience won't apply to everyone. I knew before I was even tested that I was hypovolemic because my weight just quickly dropped (104#-->97# in five days) and I was urinating excessively and it just looked like water. Also, my clothes fit the same so I knew I had not really lost all that weight. If you haven't already tried it, consider Dr Levine's exercise protocol which also recommends 10 gm sodium diet and large amt of fluids. This has really helped a lot of people and maybe you wouldn't need any meds?
  21. Hi Abby, This MD does phone consults. She is one of the physicians on the "changes: Living with postural orthostatic tachycardia syndrome" video (see you tube). Maybe your GP would also be willing to watch this video. Good Luck. Svetlana Blitshteyn, MD 835 Hopkins Road Williamsville, NY 14221 716-531-4598 http://drblitshteyn.com/ Dr. Blitshteyn specializes in autonomic disorders, headache medicine and general neurology. She is highly recommended. .
  22. Lump, a narrow pulse pressure most often means your blood volume is too low, which is very common in dysautonomia.. This is likely contributing to your orthostatic tachycardia and low bp which can then activate the sympathetic nervous system and cause the high BP. Have you tried pushing your salt intake to 10 gm daily and pushing fluids? Also a graded exercise program like Dr Levine's?
  23. Not everyone on,florinef needs propranolol. For me, the severe hypovolemia was the main cause of my tachycardia and when my volume status is improved, my tachycardia is improved. yes, there is an article I think by Dr Satish Raj cards at Vanderbilt that says specifically 10-20 mg propranolol 3-4 x daily is the best dose for pots, that increasing the dose more makes most people worse.
  24. Monica, You can't split long acting meds because it disrupts the slow release mechanism. Since you are so sensitive to meds, you should talk to your doctor about starting with the short acting form of propranolol. The lowest strength is 10 mg. You might also discuss doing one med at a time so if you have trouble you will be sure about which medication may have caused it.
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