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About Poohbear

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  1. I hope you find something that helps and works for you!! We are each unique even though we share similar symptoms and life trials so I think you will find you have to try different things and see what works best for you. You didn't mention if you were looking for medications or non-medication approaches. If you are looking for medication approaches then, in my experience and research, Have you had any catecholamine testing with your POTS medical workup? If not, it may be helpful to have this testing done (just do some research and find a facility that know how to do the test properly--I forge
  2. I think forums like this are good and that there is more awareness in general over the years but I don't see many Dr's training and treating these disorders and I don't see the 'specialty centers' (as a whole) taking steps to add or replace the experts, many of whom, are near retirement.
  3. Oh....and on the drug shortage issue.....there's a shortage of normal saline. Why? Because there are only a couple of manufacturers and they say the profit they get for producing it is so small that it's not worth it to bump up production. Makes me furious because it's such a simple but life-saving medical supply and these phamacutical companies should not be allowed to let this type of shortage happen EVER on such a supply as this.
  4. I totally agree with what you are saying. I clearly see it here in MN. For over a year there has been a huge undertaking and planning for Rochester--Mayo calls it 'DMC' short for destination medical center and the whole focus is on wealthy cash-paying customers (many who come from overseas). They say it's because they will be getting less money from insurance so they are looking to make it up somewhere. I've seen many changes here this past year many of which, like you, I believe are not good for many people. It's a lot of greed driving things and I think we are just digging our own grave as a
  5. I have been diagnosed and dealing with POTS/Neurocardiogenic syncope for 20 years but it's only been the last 10 that I've been followed by "true" autonomic specialists. I've recently lost the one specialist who was most helpful to me for many years (that person left the country). I look at some of the well-known centers and I am fearful for the future of our care. 3 of the 4 autonomic Dr's at Mayo MN are retirement age or past it and 2 or 3 of the autonomic Dr's at Vanderbilt are in similar situation and these centers don't seem to be doing anything to add younger Dr's. who are going to be
  6. Check out this link http://www.healthgrades.com/provider/john-dercola-2vvls. John is a PA but he has extensive experience with POTS and dysautonomia patients and being a PA he spends more time with patients than the Dr's. He's GREAT if you can get in. You would probably have to see a Dr on the first visit but when you call to ask if you can set up an appt. make sure you let them know that you want to ultimately work with John because you've heard that he has experience with POTS. Best of luck to you!
  7. Is there testing for mito disease? Yes there is testing but no cure--muscle biopsies and genetic testing mostly to diagnose. If you had malfunctioning mitochondria it would most likely be secondary form of disease (due to chemo) but still the supplements might provide some relief.
  8. My port lasted 6 years also with weekly usage (I had to access with each use because I'm allergic to all the adhesives and dressings) 2-3 times a week. Some ports do last a long time BUT most manufacturer's recommend replacement after 5 years so you may want to consult with the mfg. of whatever port your Dr is placing to ask what their recommendation is. At some point, if you use it often it will need to be replaced because the "bubble" you poke will wear down--it can only be stuck so many times before it starts breaking down. Having said that, like E Soskis said, if you take care of it and a
  9. Best of luck to you with your surgery and healing!!
  10. I don't know that anyone here can tell you definitively that chemo causes autonomic issues but it certainly makes sense that it could be the root cause for you. Chemotherapy does a lot of damage to the body and has some long term side effects and damage. In addition, the aging process seems to increase the number of people who develop Parkinsons and other neurological based conditions that have symptoms of malfunctioning autonomic nervous system too. Again, we aren't Dr.'s here but I think you might be interested to research some supplements that help the mitochondria of the cells. I have an u
  11. Merlin, I'll be thinking about you as your go through your evaluation. I completely understand the nerve wracking and worry that goes with the territory. I'm sending my best wishes to you; keep us posted!!
  12. I've always had similar issues to what you describe with eating. We are all different so I don't know what the answer is for you but you aren't alone!! For me, I react much worse with carbs (especially in the morning) and I can't eat much quantity either. I tend to eat an egg in the morning and from there I kinda 'snack' the rest of the day--literally just a few bites of something here and there. I tend to eat my biggest "meal" around 3pm (because I don't work and have the ability to do it that way) and then around 6 I'll have a snack that is high in protein &/or fiber. I too find that if
  13. Thank you Chaos! It is a scary thing to deal with these choices about treatments and surgeries. It looks like I'm in a category by myself since I've not been able to find anyone else with autonomic issues who has also dealt with treatment and mastectomy so I'll certainly check back here to share my experiences in case anyone else ever runs across these issues. Thanks for the hugs and prayers
  14. Thanks MightyMouse! I am looking at having to have double mastectomy and would like reconstruction. It will involve multiple surgeries but the first one is the scariest and longest 8-10 hours. I'm most worried about being under anesthesia that long. I don't handle it well and I've never been under that long. I know to expect the extended recovery but I'm also afraid that all of this will throw me into an autonomic flare. It's all a bit overwhelming right now.
  15. I have a pretty severe case/symptoms with POTS and I'm now facing the decision to have mastectomy. I am looking to speak with anyone who also has POTS that has gone through this....anyone on this site been through this?
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