Foggy01

Hey, I've had a really dry mouth and eyes the last while. I also have POTS. I was wondering what the connection between these two is? Is it necessarily something like sjorgens? (I think RichGotPots found out he had this and SFN and that was causing his POTS). Maybe I should get tested for Sjorgens too. I've been trying to get SFN testing for a while. Any experiences or thoughts about these issues yourselves?

Really sorry to hear that. I hear IVIG is hard to get on insurance in america but I hope you're successful pursuing it.

Is Rama or RichGotPOTS or Jangle still around? I was wondering if I could talk to one of them about something on Skype. I haven't seen any of them post recently. I was away for 6 months myself but now I'm back.

Hey. I was wondering who I would go to to get autoimmunity and inflammatory conditions tested for. Does anyone know the name of the specialist and if you know a good one in the UK?

Yeah it's terrible to not have a brain in tip top shape. It's like the most important thing to have.

If I take too much salt too quickly I feel worse rather than better. It has to be a subtle gradual thing in my experience. Gatorade works ok but salt by itself does not for me. Maybe this is why. Ben Levine actually impresses me a lot when I have read some of his work and emailed him. Perhaps this is a condition that somehow triggers a deconditioned-like state in patients with corresponding low blood volume. His work is certainly gaining momentum within the dysautonomia research community. Although I think a quote someone said to me recently summed up my experience: Exercise may improve the symptoms but my take is the underlying disease is still there. I was wondering does Levine acknowledge neuropathy yet (let alone immune dysfunction) in POTS? One of his best cases dropped off the radar due to mast cell issues. She ran a blog promoting him. You say he increasingly impresses you. Has he gotten more realistic in his views? Btw does he have any new data out? In the community based study I hear he didn't bother to take any heart size or Vo2Max or stroke volume measurements. Also can't send you any PMs rama. Your inbox must be full now.

Yeah betablockers and such do not solve even the proximate problems (like bad circulation) let alone anything deeper down like immune dysfunction/nerve dysfunction. They just made me even more tired than normal.

Nice that someone is actually paying attention to brain fog now. Back before it was "all in your head". You were "just anxious" or something.

Yeah I get a lot of these.

Thanks Alex so much!

Hey, I was wondering if we could collect all the info we have about this condition itself and also its connection to POTS/CFS/fibro/dysautonomia. Just to make an easy resource for those trying to convince doctors about the link between their symptoms and this, or just for their own education. Summaries are fine since I guess we can't get access to the full articles but maybe a summary is enough.

It's amazing how common this is.

It's interesting so much of us have this. When I first joined this board and just had the usual POTS symptoms no one seemed to be talking about it. Now suddenly when I have it I notice everyone is talking about it (or a lot of people rather). Strange this all seemed to come out of the woodwork now.

RichGotPOTS did a good breakdown of these breathing issues. One seems to be caused by a nerve dysfunction and the other perhaps by an actual lack of perfusion in the chest area. The "forgetting to breathe" feeling is the nerve dysfunction one but the second one you describe (smothering sensation) could be either the nerve dysfunction or an actual, although transient, problem with lung capacity and blood flow. Anyway just to let you know you're not alone. RichGotPOTS has had it for around 18 months on and off and I've had it for 6 months now fairly constantly. It's very distressing so I completely understand what you're going through, as would the many others I've spoken to that have it regularly or have had it once. Hang in there. Research is continually showing connection between POTS and Small Fibre Neuropathies and immune dysfunction. While it's hard enough to get Small Fibre Neuropathy skin biopsy testing (I couldn't get it) let alone immune treatment (like IVIG, Rich couldn't get it), there is hope that research is slowly but surely getting the immune connection fleshed out and doctors will someday find it plausible and will treat POTS properly. There are other potential immune treatments other than IVIG. If anyone wants to discuss these you can PM me.

Yeah difficulty swallowing seems to be common. This sounds related to what others and I have gone through in regards to loss of sensations such as the impulse to breathe and swallow and such.

Interesting. We have similar symptoms and I've always had dry mouth and eyes since this started. Maybe I should be tested. Of course I couldn't even get a skin biopsy for SFN so I doubt I can get anything else here.

Rama if you read this I'd be interested in the specifics of your disagreement with dr. cheney. I haven't watch this video yet but his secretary sent me a paper of his outlining his recent view and I guess it's the same. So I wonder what your disagreement with his current views on cfs/pots are.

Dunno about him/her but the team there seems to just give out the usual stuff like beta blockers/exercise plans. They won't read anyone elses research even if you bring it about other potential drugs. Those still in the research phase or that they don't have clinical experience with don't seem to be considered. It might be worth a shot if you're not paying out of pocket for it though.

Yeah lesion here. Some (Cheney for instance) say UBOs (Unidentified Bright Objects) are found a lot in CFS and presumably POTS as well if the connection is indeed there. So I guess it's not surprising if we have some by this logic.

Yeah I get this. You'll notice a lot of your symptoms are shared by the rest of us at times and you'll be hard pressed to find people outside in the ordinary world that understand. I've heard of you guys mentioning so many things I never thought I'd ever hear anyone else say they experienced. Guess you guys've experienced quite a panoply of things that no one else will understand.

Guys check out his original study itself. Look at the graphs. While heart size went to normal (and even above normal in a case or two), blood/plasma volume remained stubbornly low. If you draw a linear trendline through the data points for blood volume a lot of them will still be below normal after 9 months even (assuming it's a linear trend that continues which it may not even.) This abnormal blood volume combines with a stroke volume that didn't really increase that much even when cardiac size expanded a lot. Abnormal diastolic suction didn't change at all. There is obviously something going on with the heart and circulatory system even in this group of people. I'm not sure if the word is contractility (maybe rama could help out) but it seems that despite the increase in muscle size the heart doesn't seem to have commensurate increases in contractility of the muscle leading to poor diastolic suction (the negative pressure during diastole that $ucks in blood) and poor expansion (the stroke volume didn't really improve in lockstep with cardiac mass). While Dr. Cheney's hypothesis (mitochondrial issues) about the causes behind such a "diastolic heart failure" may be unconvincing for some (rama I think you said you found it unconvincing) there does seem to be an undeniable problem with the heart's "power" (for lack of a better word) in POTS patients. Despite muscle mass approaching normal, stroke volume/blood volume, diastolic suction and overall contractility seem to be below normal. Whether one wants to say this is due to some direct autoantibody attack on the heart, or due to some immune mediated mitochrondrial issues (Cheney) or due to some other immune mediated nerve/chemistry abnormality is up to debate. But there still seems to be an undeniable issue there. (Undeniable to a full scientist; doctors can seem to be a scientist one day and an "artist" the next depending on how the wind is blowing) This "diastolic heart failure" for lack of a better word (Cheney's term not mine), is interesting. I even find it in myself. For some reason I have hypokinetic valves. It's like the muscle is just sluggish no matter how much of it there is and just cannot act with a normal amount of power when expanding (diastolic suction) and contracting (related to stroke volume; my ejection fraction is awful). We all have different causes probably but what seems to unite us for the most part is a resultant abnormality in how hard the heart can pump. And I'm not convinced cardiac mass increases that didn't improve the other parameters anywhere near proportionally explains this sluggish heart away. By the way, I'm studying complex dynamical systems at the moment along with the application of their general principles to our incompetent failing governance structures (corporations, hedgefunds/investment groups, banks, ratings agencies, academic economics, legislature, executive, judiciary, bureacracy, etc.) And the same core issues that has led to the peters principle becoming manifest in our world can be said to be the same in current medicine. (The peter's principle is a tongue-in-cheek principle that says a person or organisation will advance until it reaches its maximum level of incompetence at its "job" and will stagnate forevermore thereafter until "demotion"/crash). I won't go into these at the moment, but it's actually quite interesting how virtually all failings in our world can be boiled down to a few things and medicine is rife with them too. If anyone would like to discuss it further let me know. I just am throwing it out there to maybe help other people who are in a similar spot wondering if this situation is their fault and why the doctors seem to not care and seem to be seeing what they want to see in a lot of complex problems such as ours. (an exercise specialist seeing a heart issue as primarily a deconditioning issue? Law of the instrument anyone? If all you've got is a hammer, everything looks like a nail?) A birds eye view that shows the whole world is lurching towards its own failure and they are united in a core of common faults may put people's mind at ease as to why these supposed "rational" upstanding people are treating them like this, and remove any sense of shame or guilt.

What study?

Guess what you're saying sounds familiar.

Yeah it's fairly impossible to make them with something like this.

Anyone know a good immunologist in the UK that can test for autoantibodies, mast cell issues, allergies, small fibre neuropathy by skin biopsy and so on? Really need to get the ball rolling soon, my issues are getting worse. Thanks.