kitt

Rama, Please share your research on this about 'POTS patients dont conserve salt balance correctly.' I feel this may apply to me, but before I share my experience I'd be very interested in hearing what you've learned about this topic in your research. Thank you for sharing! K

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This became new to me about a month ago. I wake up in the middle of the night and it sounds like a tea kettle whistling, or a far away train, except with a much higher pitch. Another early morning I thought it was lawn keepers blowing and mowing outside. Tried to plug my ears and was confused for a minute when it kept on and on... It's now intermittent, but chronic. I use meditation and mantras I learned many years ago to go back to sleep. Very irritating, but guess it's part of the big picture. Neurologic, and suspect it's stress related as well.

Good find Naomi!

I just called my insurance company and they say I'm covered, although I didn't tell them it was for dysautonomia. It's being prescribed by a cardiologist who's very knowledgeable about dysautonomia, so I think it will be a go.

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I've had intermittent episodes of blurred vision for about a year. Think it's on the symptom list for hyper pots? Can't read the computer screen or watch television when it happens. As I say, mine comes and goes. Hope yours does too! Goes I mean...and stays gone.

I just got a script for cardio rehab from my cardiologist, and your post surprised me. I have good insurance, and have never had them deny any type of physical therapy. Did some research tonight and it seems like a lot of people have not had success with their insurance companies paying for it. But some have. I'll be making some phone calls tomorrow to find out more.

Sue, You're right. I forgot about us both reading that article. It's an interesting subject. It's curious to me though that none of the 'big' dysautonomia doctors and medical centers are not exploring this. I have a lot of faith in Dr. Grubb, Mayo and Vandy...And think they must have opinions on why they're not exploring this. I'd be interesting in hearing their thoughts.

Interesting Issie... Great minds think alike ; ) This video has only been up for about 24 hours, but I think it's formidable. Compelling. For myself, did not realize dysautonomia was such a hugh factor in MS and Parkinson's. His bio is exceptional. He's anti-stents...Think he's onto something. I will gladly pay if it's covered by insurance and I'll query my carrier on this in the next week. (Like trying to woo a steer into a slaughterhouse. Insurance companies appear to be masters of deception and obfuscation....I always have to have a written list of talking points. I take names, dates, and let them know I'll be following up.) It's our money paying big premiums, and it's well worth knowing what's covered. Glad you got to see this Issie. I too found it compelling.

Am not being smart, but not eating is a very common issue. At least for me. I 'think' I eat plenty, but don't in reality. It's a good idea to keep a food diary. When I did, it surprised me. Good luck with this!

Bear in mind that he's been treating dysautonomia as in MS and Parkinson's patients. I think he's compelling with the exception that I have hyper pots, and don't think this applies. His background and specifics are formidable.

This is a new video by Michael Arata M.D. He's a smart doctor, here's a link to his background. http://www.southcoastveincare.com/michael-arata.html This new video is 30 minutes long and worth watching to the end. (Not sure how relevant this is to hyper pots), but it's interesting. http://vimeo.com/58267032

The excerpt is from a Vandy paper. Applies to hyper pots patients exclusively. Makes a lot of sense! http://hyper.ahajournals.org/content/45/3/385.full

Kelly, Was going through my bookmarked papers, and found this: technical theory published by the researchers at Vanderbilt: "Mast cells are localized in close proximity to blood vessels and peripheral nerves and are therefore strategically positioned to modulate sympathetic activity, vascular tone, and angiogenesis.20 Histamine is a powerful vasodilator that could explain the cutaneous vasodilatation responsible for flushing. With regard to the pathophysiology underlying the association between POTS and MCA, we propose a positive feedback loop by which MCA, with the subsequent release of vasoactive mediators, may contribute to vasodilation, reflex sympathetic activation, central volume contraction, norepinephrine release, and orthostatic intolerance (Figure 4). Conversely, our results indicate that exercise can lead to MCA, presumably through sympathetic activation."

Great information Kelly, thanks for sharing this amazing experience. Interesting about blood volume, many of have 'assumed' this is an issue for 'us', and according to your information, (great source), this may not be the case. You did benefit from the IV saline because of the salt. So would you want to continue occasional IV treatments once you're home, after a crash for instance, or under other circumstances? Glad you got to meet Dizzyde, what a privilege to meet a fellow patient and forum friend. Hope to hear more after you're rested and have time to digest and process the experience even further. Thanks, K

Am glad so many people were able to download it in the time allowed. It's a good book with some basic information. I have to say though CFS is far more complex than the book implies. I say this having seen several of the doctors mentioned in the book, but more so because of having been very sick with this for decades. Not 'pots' sick but CFS with hyper-pots sick. CFS is known as a 'spectrum disease' much like MS is. Meaning some people may have a diagnosis of CFS but still be functional. Others of us are in the very low end of the spectrum, and have been 'tested' by leading world experts and by looking at reams of immune data and testing they can see our immune status and state 'you're in the lowest 10-20% subset' of CFS patients. Current state of the art research is quite a bit ahead of this particular book, but the book is a good primer though is not 'up to date'. Unlike disautonomia, CFS is being very actively investigated by researchers worldwide. Among other pathogens they are still searching for a possible/probable retrovirus. A retrovirus is extremely rare. There are only a few in the world. HIV being the one that is most well known. A retrovirus is extremely difficult to 'track' because of the way they mutate. Some of you may know that THE cause of CFS was recently discovered...A retrovirus known as XMRV was 'conclusively' determined to be the cause of CFS. It made the news in a big way. Dr Oz even did a segment on his show with a CFS patient, saying this is caused by XMRV. It was reported in every major newspaper and magazine. 'It' hit the fan when the research results were not able to be replicated by researchers around the world and researchers are now focusing on other pathogens. The CDC, (The Center for Disease Control) issued a primer about CFS many, many years ago and it in part reads, and I quote: all CFS patients are limited in what they can do to some degree. CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD), and similar chronic conditions. Here's the page issued by the CDC. http://www.cdc.gov/cfs/symptoms/index.html For those of you who are really interested in this disease and have good cognitive function, Please refer to a book called Osler's Web, by Hillary Johnson. This book is fascinating and reveals the massive cover-ups by the CDC and the NIH regarding CDC. CFS is finally being regarded by doctors in a respectful way. For decades we were dismissed by every major medical hospital and doctor but for a few..(Mostly the ones mentioned in the book you downloaded.) Ironically, most of the doctors who are making the most headway into CFS are not mentioned in the downloaded book. These are doctor who see patients and who are actively researching with MAJOR funding from the NIH and other sources. The immunologist I see, who is world renowned for CFS research went on record in Newsweek magazine as saying..."If I had to had HIV or CFS, I'd rather have HIV. My HIV patients are hale and hearty and she goes on to talk about the very poor quality of life experienced by CFS patients. Didn't mean to go on and on, but this disease is very complex. As I said the book you downloaded is a primer so to speak, but in no way speaks to what is currently happening in 2012. As a post note, I must say, Please don't think because you are chronically fatigued you may have CFS. As I say this is a neuro-immune disease and very complicated. 'Think it's a reflection on the exceptional intelligence factor of DINET members for showing an interest in the body and how it works that they're willing to read about other illnesses and co-factors that also involve disautonomia. You're ahead of most medical doctors!

Hope people have had a chance to peruse this book, and to see the information on dysautonomia! Very common to people with CFS as more that 50% of POTs onset is due to a viral onset. How does this information help you? Unless you have a significant viral onset, probably not a lot, but because the viral aspect in a pots is so huge, you may want to have viral titers to EBV, CMV, and HHV6 measured. If you're carrying a 'huge' viral load, it's very possible you can take an anti-viral and lower your viral load. This depends on your CBC and further immune investigation. If your CBC looks good, and you're in the hands of a good immunologist or virologist you may be able to address this. If you have hyper-pots you probably already know that this form of pots is for life. On the optimistic side, 'regular' pots patients have a good chance of recovery. (Particularly young pots patients.) Good luck to all coping with this and thank you for sharing your experiences!

This may not be helpful, but we used to give our dog saline injections daily...We'd hang the saline bag, (the exact same ones they use on humans), and administer half a bag a day. We bought the saline bags by the case through a local pharmacy, as well as the tubing and needles. I remember shopping around with different pharmacies, and the price was remarkably different at different pharmacies. Our dog had juvenile renal disease, and we did this everyday for well over a year. He was very patient about laying and taking the infusion. Here's a blog I found about a girl who has been through the saline 'hoops' and is now looking at giving herself subcutaneous saline at home. When we gave out dog Sub-q (subcutaneous) injections, the time it took to administer the fluids depended on the size of the needle. The larger the gage of the needle the shorter the time. We could give him half a bag of saline in about 30 to 45 minutes. Not suggesting anyone run out and 'do' this, but with port, it could be very easy, (and no needles). Here's the blog...She refers to ME. ME is another word for CFS. In England they call CFS ME. ME stand for myalgic encephalomyelitis. Same disease as CFS. We just have an incredibly offensive name for it in the U.S. CFS is not about fatigue, it's a neuro-immune disease. Calling it Chronic Fatigue Syndrome is like calling Parkinson's Disease 'shaky person syndrome! Blog site, with other links to saline injections... http://www.sarahsworld.me/2012/03/nitty-gritty-on-saline-ivs-pots-me.html

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I realize this is a dysautonomia forum, but there are other people here with CFS and many people here who will find this free book on CFS interesting! Jan. 19th & 20th click on link below and get a free CFS book. Available free for two days only. You don't need a kindle. You can download directly to your computer. I just did it and it works. Directions below. http://www.cfstreatm...nd-edition.html

Thanks for sharing about this exceptional experience Kelly, I hope you'll keep posting, but more importantly enjoy the experience while you're there! Am guessing that you are. Think it must be wonderful to meet people with dysautonomia. Hope you get to touch base with dizzyde who posted above. And meeting Dr. Raj...That's got to feel pretty amazing. Every time you read a research paper from Vandy, you'll see the authors names, and think 'my old friends'... Thanks for sharing.

Thanks Kelly, I'm following your thread and hope you're doing well at Vandy...In my experience the more I give the more I get, so feel certain this visit is going to be/has been amazing for you! You and I are both hypotensive, and I'd be very interested in hearing more about what you learn about Methyldopa! Are you planning on starting it while there, or shortly thereafter? What does Dr. Biaggioni have to say about Verapamil, if anything? Are you still taking Verapamil, or did you just start? Am really happy for you having this extraordinary experience at Vandy! Soak it up and thanks for sharing.

Since you live in Nashville, am wondering if it might be worth your time and energy to apply for one of their research studies. Have you read Kelly's diary of her experience on the thread called 'Diary of a patient at Vanderbilt'? Might be a better/different experience for you. You wouldn't have the expense of travel, and it would not be charged to you or your insurance. Sorry you had a bad experience.

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