Foggy01

Hey guys,

I don't know where else to turn to. I have this very troubling symptom the last few days. I was wondering if anyone else with dysautonomia has had it.

Essentially when I'm focused on my breathing, such as when I'm relaxing or just about to go to sleep, I don't feel the full impulse to inhale fully, and I end up with really shallow breathing.

I'll check the oximeter and the spO2 is indeed dropping, and I can feel that I'm not getting enough air, but nothing is telling me to breathe deeper in my chest.

I think my breathing is working when it's involuntary, like when I'm not focused on it. But when I'm focused on it I don't get the full impulse to breathe properly anymore.

Has anyone else experienced this?

Thanks,

Foggy01

Hi everyone.

It's been a few years since I've been online regularly. Also my display name seems to have changed. It used to be Foggy01.

I see a lot of new members. I also notice many of the regulars I talked to before haven't been online in years. Rama and Jangle come to mind. I was wondering if anyone knows what they're up to? Last I heard Jangle was entering medical school.

I was also wondering about AllAboutPeace (Lori). I hope she's ok.

There's several others as well I miss.

I've had a big flare recently and was wondering how everyone else was doing.

Regards,

Foggy01

I only heard the results of the holter on the phone today from a doctor in the same practice as my gp. I haven't even got to talk to my gp about it let alone a cardiologist yet. That'll be a few weeks away unfortunately.

I was hoping in the meantime to reassure myself that it's something benign with pots but I think it's looking like something else is going on.

Has anyone with POTS also been diagnosed with episodes of MAT (Multifocal Atrial Tachycardia)?

I was surprised to be diagnosed with this recently since they ruled out heart issues when they gave a POTS diagnosis and said my tachycardia was benign.

Anyone else have such a change in their situation?

It was only an episode of it caught on Holter. I'm not sure how often it's happening.

Here are the threads I could find. Hope it helps.

Hi rje11,

You should get this checked out by a doctor. It could be a central apnea of course. But it sounds an awful lot like what many have reported on this board before. I collected many stories from people on this forum with similar experiences with "forgetting to breathe". A quick search for that term might bring up the old thread from many years ago.

We know how scary this symptom in particular can be and many of us say it's the worst one. And also we know how scary it is when you're lying there trying to sleep and you feel terrified and alone with this crazy symptom. At least you can know you're not alone in these episodes, for lack of a better term.

It comes and goes for many people I talk to. Some more frequently than others. It helps to talk to others about it and realise they've been through the same. I'll try and find the old thread later.

Hope this symptom has passed for you.

Of course you might want to get checked for a central apnea as well, but it does sound very similar even down to the way you phrased it.

Yeah there's all these strange and seemingly unrelated perceptual changes that seem to go along with POTS and other similar syndromes. Many people seem to have these things.

RichGotsPots heads a support group on Facebook for people with Sjogrens-caused autonomic Small Fibre Neuropathy and POTS. I don't think he hangs around these forums much anymore, but you could try sending him a message here or maybe one of his friends will pm you the FB page. I don't have a link.

Good Luck.

Hi foggy.

I have ME/CFS. In the early 2000s I saw Dr. Sue Levine in NY. She gave me a standing test in her office which I passed, though I did have symptoms of mild OI. I then had a chromium 51 blood volume test at my local hospital's nuclear medicine department, as well as a SPECT scan of my brain. My blood volume was indeed low, and I had diffuse perfusion in the parietal and temporal lobe. It wasn't until years later that I developed POTS. So, I definitely had evidence of autonomic dysfunction - low blood volume and poor blood flow in my brain - without POTS.

I think a lot of Susan Bateman's ideas are interesting, but I definitely think it may even be more complicated than that and her theory leaves out a lot. The POTS/non-POTS division is kind of confounding in my case, and POTS seems to come and go in other patients. She doesn't really address the theory of persistent viral infection of the Stanford group or Nancy Klimas's notion of acquired immunodeficiency via poor Natural Killer Cell activity and disruption of the RNaseL pathway. But, I like that more researchers are thinking about the possibility of autoimmunity for all of the reasons stated in the article.

I think it's possible that there might be a subset that is autoimmune that probably responds to Rituxan, they have about 30% doing very well with B-cell depletion which suggest autoimmunity. There are people the respond to Ampligen and other immune modulators, and those that have elevated viral titers and do well on Valcyte and Vistide, and they might be the ones with chronic immunodeficiency.

I personally like Mike VanElzakker's vagal nerve theory because the the vagal nerve enervates organs involved in autonomic response, and it's a communication pathway between the body and the brain. A persistent herpesvirus infection housed there causing an ongoing immune response would cause all sorts of dysregulation.

This disease is complicated and is definitely not a low hanging fruit when it comes to medicine understanding it!

Hey,

Thanks for your story and your contribution. Yeah I think POTS can come and go but the underlying low-blood-volume remains and other CFS/ME issues remain despite it. It is just one symptom that can come and go in these type of people I think.

If I may ask your thoughts: Wouldn't this neuroinflammation theory mesh with what others like Nancy Klimas have found in an indirect way? A heavily TH2-Shifted chronic state of immune activation could cause both overactive microglia in the brain, due to one of the cytokines involved in humoral immunity activation, and also deplete the intracellular immunity cells (NK Cells and CD8+ T-Cells) involved in the TH1 response.

What do you think? Perhaps low NK Cells and low CD8+ T-Cell findings could be the result of a person having a TH2-dominated state of immune activation and they deplete in proportion to the length of time its overactive (explaining the variable numbers found sometimes). The cytokines involved in this could also keep microglia consistently over-active in the brain?

I am new to investigating CFS/ME so I am very open to other view points. With that said at the moment (like a lot of the research community I think) I'm leaning heavily towards an immunological explanation ultimately. I see you agree that at least 30% probably have immunological causation with their fatigue resulting from b-cell proliferation like in Sjogrens. But perhaps a lot of other cases could have an immunological cause just it's not as simple fixing it as depleting B-cells.

Even in Sjogrens rituximab/rituxan didn't significantly improve fatigue after 6 months that much (if I recall the study correctly). It seems to be more complicated that just killing lymphocytes even in Sjogrens where the main problem seems to be lymphocyte proliferation. So maybe the fact that only 30% respond to rituxan isn't indicative that ONLY 30% have immunological causation.

So to summarise, perhaps a lot of the findings such as low NK-Cells, low Killer-T-Cells and neuroinflammation of microglia can be explained through a common cause like a TH2 dominated /TH1-depressed immune state AND this TH2 state is not as simple as just killing the agents of humoral immunity like B-Cells. The whole cytokine environment could be out of whack whereby some pro-inflammatory cytokines cause microglial activation and other things (like reducing NET transcription in POTS perhaps) WHILE causing a depressed TH1 response that leaves one suseptible to chronic viral infections (perhaps chronic intracellular infections like with viruses are due to a depressed TH1 response).

Viruses of course may be a trigger that start the chronic shift to TH2 (Pathogens trick our immune system into activating the other arm of the immune response so they can replicate in peace. Intracellular pathogens will trick a TH2 response even though its a TH1 response we need to clear them). But perhaps a person may already be heavily predisposed to a TH2 dominated response and a triggering virus just shifts it into permanent overdrive? I think Dr. Lipkin says that disruptions to the natural microbiome (bacteria, helminths, etc.) in our guts may shift the cytokine environment into already unstable territory and out of natural balance. He's investigating this.

This jives also with one of the main hypotheses behind ALL autoimmunity (the Hygiene Hypothesis - Lack of Pathogens/The Microbiome Diversity Hypothesis - Disruption to natural bacterial flora inside us/The Old Friends Hypothesis - Destruction of natural helminth symbiotes). The idea behind them all is that a TH2-dominated response results from lack of interaction with infections/infestations that shift us AWAY from TH2 to TH1 such as bacterial pathogens like H. Pylori/ or other bacteria in our guts/ or parasitic/symbiotic worms like Helminths in our guts.

Let me know what you think of this overarching theory of what perhaps will be the majority (?) of CFS/ME. I think it could well be higher than just 30%. Of course CFS/ME has been treated as a garbage-bin diagnosis (no offence meant to sufferers) for a long time so there may indeed be many other organic diseases in there that shouldn't be. This is the problem with an exclusionary diagnosis and the focus on "fatigue" and not other biomarkers. But I think it could well be more than 30% that could be explained by this overarching immunological theory. Of course chronic immunodeficiency is always a suspect in any autoimmunity but I dunno how bad it could be (some studies find no significant increase in cancer risk that I came across, but perhaps you could show me some that indicate a double digit indication of immunodeficiency in CFS that is not NK cell depletion [which I think can be otherwise explained]).

Thanks for reading, sorry for the wall of text.

http://www.cortjohnson.org/blog/2014/05/06/blood-volume-will-ischemia-key-pots-chronic-fatigue-syndrome/

Interesting how Low Blood Volume may be the cause of so many symptoms in both CFS/ME and POTS. Perhaps the mitochrondrial issues and the resulting cognitive and muscle issues are all causes by low blood volume.

Stewart thinks that many POTS cases are because of the carotid body reading blood gas levels wrong and triggering reduced blood flows to the brain which seems to cause reduced blood volume that causes many other symptoms.

Low blood volume even without POTS is a consistent finding in CFS/ME. Perhaps POTS for many is just one reaction to low blood volume you can have and 50% of us are on the CFS/ME spectrum. If anyone thinks they are on this spectrum the neuroinflammation theory linked above might be of interest.

The idea behind the neuroinflammation theory is that the activation of microglia (the brain's immune cells) in the mid-brain has upstream and downstream effects. It also has direct effects on memory, attention, reaction time and arousal which are what are consistently reported in CFS/ME and POTS (Brain Fog). The upstream effects are on the neocortex and frontal lobes (despite there being low inflammation in these areas especially the frontal lobes) and downstream effects on the amygdala and hypothalamus and other structures that have roles in the neuroendocrine system. These neuroendocrine structures are affected and hormone production (Such as the hormones needed for blood volume levels and female reproduction) are greatly affected.

Perhaps then low blood volume due to these hormone issues causes the rest? Reduced blood flow to the brain and muscles and such can cause the mitochrondrial issues due to oxidative stress.

Does anyone have any knowledge on CFS/ME and the intersection with POTS that could perhaps confirm or argue against this hyphothesis. There's a summary of it in the first post. I'd be interested talking about it.

Hey,

Has anyone read this? It seems that this doctor has put together an explanation for what causes CFS and she mentions what she thinks are the two most frequent causes of POTS. One is primary and involves autoantibodies against receptors and another is secondary and involves the neuroinflammation seen in CFS/ME/FM causing POTS as a secondary condition.

What does anyone think about this classification scheme for etiology? Could she be right and this is finally a comprehensive way of explaining CFS/ME/FM/POTS for most?

Have a read and let me know what you think.

http://www.cortjohnson.org/blog/2014/07/17/mystery-longer-big-picture-emerging-chronic-fatigue-syndrome-dr-bateman-talks/

Yup youre not alone. Whatever happens it feels worse than if i was exercising. Youre the first I've heard say it though.

These breathing issues we get in POTS (I've also heard some people with Sjogrens and other neuropathies/dysautonomias mention it) seem to be a difficult to pin down thing. Many people report a breathlessness that is not helped by rest or report a "forgetting to breathe" loss of sensation. These appear to be nervous system issues to be honest. Sadly I've never found anything to help them. It's not arterial O2 that seems to be the issue. I don't think it's something as simple as O2 or blood not getting to the brain. Some sort of neural dysfunction is occurring. Me and Rich discussed it a few years ago. If you want to read I can send some links. I think it was January 2013-October 2013. He's not been on the site recently I think but had some good ideas as to what was going on. The conclusion was that it was some nervous system issue and not really true air hunger.

Had a very similar experience in Ireland. Psychiatrists are very keen to spout woo-woo like "Anxiety" and "Depression" and "Psychosomatic" whenever they need to fill the Gaps. (God of the Gaps/argument from ignorance)

Doctors aren't much better. That's why your specialists won't use proper terms in their correspondence. There is no regulation here in Ireland (except a guideline by the Medical council in 2011 but it's just a guideline) that doctors continue to educate themselves. These terms will never be on their radar, and any nuanced meaning behind them will certainly never be developed in their understanding, given the current state of affairs.

I sent you the name of a good specialist. Good luck.

Were you diagnosed with a sensory small fibre neuropathy or something? What is causing this pain do you think?

Yes hot flushes and flushing happens to a lot of us randomly. If it happens regularly you might think of investigating MCAS (Mast Cell Activation Disorder) a now recognised (by some) lesser disorder of the mast cells than extreme ones like mastocytosis. The test is to examine the urine for histamine after one of these flushing episodes.

I think I know what you guys are going on about. No idea what causes it though.

Thanks guys. I'm getting them seen to.

Yeah. Illnesses with an immune cause behind them (like POTS) shouldn't be used to explain away all your symptoms since other comorbid immune problems (autoimmunity like Sjorgens or histamine related illnesses like asthma) are more likely to exist if you've already got immune dysfuction. Anyway hope the nebuliser works well for you. Good luck.

Thanks AllAboutPeace. I hope it turns out to be just pots related.

Thanks guys. I'm seeing an eye specialist tomorrow and he'll be able to tell me if I need to see a neurologist or what. Thanks again. Still I'd be interested to know if anyone else experiences this and what it's in relation to. (like migraines or other benign illness)

Do you guys ever get unequal pupils? I'm wondering if I should be worried about this.

Thanks guys for the input.

Lip biopsy is really the only fairly accurate test for sjogrens, because I tested negative, as well, and I've had major corneal issues (Edema, ulcers, etc) and severe chronic dry eye, and a dry mouth is a constant symptom for me, as well. Biotene is supposed to help your mouth, and I use the Refresh ointment at night, and preservative free eye drops during the day when I remember to do so.

Did the lip biopsy end up showing you had sjorgens? Sounds terrible what you've had to endure with the edema and ulcers. :/

I think Doctor Stewart takes only kids. How old is your child? They only take adults for studies.

I'd recomment him over the Mayo to be honest. I feel he's far more enlightened about POTS and its associated causes/consequences than some of the docs in the Mayo (won't name names). Good luck.