Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by HyperPOTS8

  1. Firstly, the reason the wait is so long is because he only sees five new patients per month (his staff told me that). I also went last May and only waited 8 months.
  2. No, mine was done I believe the day before the blood volume testing. At Mayo, the catecholamine testing is done in the lab and the blood volume testing is done in nuc med.
  3. I am on a very high dose of clonidine--I use two 0.3 mg patches every five days and then take up to 0.6 mg oral clonidine up to 4 times daily as needed along with diltiazem when my BP shoots up. I also occasionally have low BP. I have very high NE levels with supine levels 1400-1800 and upright 3400. This medication has helped me a lot and has no side effects in my case. I also take florinef as very high levels of catecholamines usually cause hypovolemia and I have severe hypovolemia by blood volume analysis at mayo.
  4. Rama-- yes, at Mayo they told me "you have a pheochromocytoma without the pheochromocytoma, presumed to be due to brainstem dysregulation." Anything stimulating like driving on the highway or going to my kids' basketball games causes my BP to shoot up, etc. I have antiphospholipid syndrome which the MD who described that syndrome believes is the cause of my autonomic disorder. This syndrome causes various disorders of the CNS, including seizure disorders, movement disorders, etc with the mechanism felt to be due to "sludging" or microthrombosis and/or direct anti neuronal effects of the antiphospholipid antibodies.
  5. I just saw Dr Grubb. He now feels there are multiple different phenotypes within the Hyperpots subtype and that this will all be better defined in the coming years.
  6. Norepinephrine is synthesized from dopamine so many people with a very high NE level will also have a high dopamine level--the pathway is rev'ed up. eg in response to hypovolemia or vasodilatation, etc. MIne are also both elevated.
  7. Because of the mechanism that NM Potsie explained, Dr Grubb may use midodrine in my case which would seem on the surface not to make sense since my BP can go very high. He said it doesn't make the high BP's higher.
  8. Kitt, Yes I have labile BP which is more often high but sometimes also low. My physiology (as described) is very abnormal and totally different from Mrs Jones with essential HTN. If I didn't take salt and florinef, myBP would be even higher. Yes, that is part of my treatment program which has been reviewed by Mayo and Dr. Grubb. This doesn't necessarily, however, apply to everyone with hyperPOTS.
  9. All patients with pheochromocytoma have hypovolemia as the excess cathecholamines reset the volume status at a lower level thru a complex mechanism. I have hyperpots with very elevated NE levels (3400) and have severe hypovolemia (by blood volume testing at Mayo) which my Mayo autonomic neuro MD felt was due to the very high catecholamines (same as the pheo mechanism). There is certainly also a vicious cycle created whereby the severe hypovolemia (which in my case was associated with ischemic ecg changes) then triggers the release of more catecholamines. In contast to many pots patients, my renin and aldosterone levels were appropriately very elevated. My tachycardia went away completely once I got on florinef and salt tablets. One of the mechanisms of this presentation is felt to be due to antibodies to alpha and/or beta adrenergic receptors.
  10. Your BP is normal. Your HR is also within the normal range for many people. Some people may be symptomatic at that range, but most people aren't. My HR regularly goes to 42-43; I don't feel any different at that level than when it's higher. If you do feel symptomatic at that range, then you should get it checked out, eg with a heart monitor.
  11. Hi Miqual--if you test positive for the ACh ganglionic receptor antibody then you are given the diagnosis of autoimmune autonomic ganglionopathy and IVIG, etc are used for treatment. I also tested positive for one of the other many antibodies on the panel (striational antibody in my case), and was told by one of the Mayo autonomic neurologists "we see this all the time, but we don't know what it means." It turns out that my autonomic disorder is due to antiphospholipid syndrome and I have been getting IVIG for the last 6 months and it has helped me greatly.
  12. Hi Jangle, I saw Dr Sandroni. She is very nice and smart. I think you will like her. I actually asked her about mestinon, but she did not think it was a good choice for me since I have hyperPOTS. She felt it was a better drug for pots patients with low BP. Let me know if I can answer any other questions.
  13. I also have polyclonal gammopathy. In my case, it as well as pots is due to antiphosholipid syndrome. Antiphospholipid syndrome can also cause premature birth. Sjogren's syndrome is another common cause of monoclonal gammopathy that can also cause pots.
  14. You could print it out and give it to your doctor
  15. Good luck! Rich. IVIG has helped me greatly. Let me know if I can answer any questions.
  16. Hi Auntwinnie, You might want to ask to be tested for antiphospholipid syndrome(APS), Also called Hughes syndrome. It can cause Raynauds and pulmonary hypertension--and although this is not well known it can also cause autonomic dysfunction. I have pots due to APS and have improved significantly with the proper therapy for APS. The tests are PT, aPTT, anticardiolipin IgG and IgM, beta 2 glycoprotein IgG and IgM and the lupus anticoagulant. You can read a bit more about this if you like on the forum Healthunlocked Hughes syndrome.
  17. With insomnia, headaches, nerve pain and low dopamine levels, it seems worth a try...I hope it will help your son.
  18. It increases catecholamine levels and is on the list of drugs to avoid in POTS--see the home page of this website (it is a tricyclic antidepressant).
  19. I occasionally get low BP periods on clonidine (lowest 70's/50's), but have never gotten associated numbness.
  20. It depends on the brand. I checked with the manufacturer and the brand I have can be stored at room temp and works fine. I get a 3 month supply. TEVA-0997)
  21. Many people with POTS have hypovolemia and should respond to salt and fluids +/- florinef, but some have normal blood volume in which case these therapies don't help.
  22. Hi Kitt, I take lovenox and plavix longterm for antiphospholipid syndrome (APS) which is an autoimmune hypercoagulable disorder. Prior to this therapy I had severe, constant migraines, blank spells in my thinking (which were different from the brain fog of dysautonomia), bony ischemia which are all well described non thrombotic manifestations of APS. I happen to also have an autonomic disorder due to APS. What has helped me for the hyperadrenergic/autonomic trouble is clonidine and volume repletion with florinef and high salt/fluids. I don't know if you have tried clonidine in the patch form? Oh, and I also did the Levine protocol (and have since done regular aerobic and strength training) which I strongly advocate. Yes, one of the very first symptoms I had was a complete inability to sleep. I had to take ambien 10 mg nightly to sleep. Now I only need to take 5 mg qhs. That works well for me. I am hoping to gradually taper off it. I think getting sleep is extremely important--no one feels well if they have not gotten a good night's sleep.
  23. The Mayo dysautonomia/paraneoplastic panel can be ordered by any doctor. Like many other tests, the blood is drawn locally and then sent to Mayo for analysis.
  24. You should be tested for antiphospholipid syndrome. It can cause severe migraines and the kind of memory issues you describe as well as dysautonomia. The treatment can be as simple as an aspirin daily or it may be more complex. I had all of the issues you describe and have improved markedly with the proper therapy. This can run in families. It does in mine.
  25. Joann, By "set me back" I mean exactly what you said. Before I went off my meds someone on here warned me that could happen and it did. I was already on exactly what they told me to take before I went to Mayo because I knew I was hypovolemic and I knew I was hyperadrenergic (based on more simple testing by my local doctors). I would say it was still worth it to get the complete testing done and done properly and interpreted by autonomic experts--then the diagnosis is very clear. Also, I do not think most people get "set back" for a prolonged period by going off their meds for testing at least I have not read many people mention it. Yes, I salt load even with high BP and that is what they recommended in my case at Mayo. My BP is very clearly much higher when my volume is down.
  • Create New...