Dinet needs your help

[Pistol]

As you see advertised on the top of our web page - we are looking forward to our upcoming dysautonomia webinar, which will be taped over the month of October and available on our you-tube channel. There are 3 speakers with 3 subjects: POTS overview, COVID and dysautonomia and How to identify the different types of dysautonomia, and the last session is a round table discussion between several healthcare members and a patient representative. 

Following each session, and of course during the round table event, we will ask the presenters audience questions. Since these are not live events we would like to ask you to submit your questions for the speakers' subjects and the round table at this time. We will ask them after each presentation and you will see them answered by the experts! 

So, please feel free to ask any questions you want brought to the attention of the speakers here in this post and we will use them gladly for the webinar. I hope to see you there!!!!! Thanks - Susanne

[MikeO]

Hi @Pistol I do have questions about what tests and results are needed to positively diagnose PAF. I know that my tilt table tests suggest nOH but with that diagnosis usually will point to other underlying issues like PAF or (MSA or Parkinson's disease)   

Thanks in advance

Mike

[cmep37]

I'd like to ask about how POTS/dysautonomia is affected by aging.  I was told by one consultant that POTS was rarely found in anyone over the age of 50 (I'm 43 and have had POTS symptoms since I was 13 so I was looking forward to this miraculous cure in 7 years time😉!) but another doctor I mentioned this to laughed at his idea and this forum kind of proves him wrong!  I'd be interested in how menopause affects POTS symptoms and whether getting older is likely to make POTS worse or better.

[Glassywood]

Hello, I was diagnosed with dysautonomia  by my cardiologist 6 years ago at the age of 69. Tests were run including tilt table which I failed. I do believe I have had dysautonomia, POTS, most of my life but was never diagnosed correctly. I saw many doctors but was not diagnosed until I saw a cardiologist.  Every individual is different so I can only tell you that for me, POTS has gotten worse with age. I however have not been a severe case, have always been able to be up and about and exercise by taking a short walk daily. So, I wonder if a lot has to do with a person’s case severity. My worsening of symptoms may be very minimal compared to another’s which have all along been more severe.  Best of luck to you. 

[cmep37]

Thank you for telling me your experience of aging with POTS @Glassywood. My first POTS symptoms began in my early teens and for the first 5 or 6 years my POTS symptoms were fairly mild (I thought they were gynae related as I was really only affected during my period) but then I got EBV/glandular fever at university and the symptoms became more frequent although still relatively mild.  Things gradually worsened over the next 5 years with me trying to ignore the fact I was on the verge of fainting/actually fainting multiple times a day until I finally had a complete collapse in front of an important client and had to admit defeat and give up work.  I then worsened to the point that I was bedbound for 3 years. I finally managed through very gradual exercise to improve to the point I'm at now - housebound and pretty severely affected (after 5 minutes standing my HR is well over 140BPM, BP 100/80).  Despite having had POTS symptoms since I was a teenager, I was only diagnosed when I was 38 (5 years ago) and I also got a hEDS diagnosis at the same time which is the likely cause of my dysautonomia.  I'd describe my POTS as poorly controlled - no meds I've been prescribed have helped - either they didn't work or I had side-effects worse than the original problem! so I manage with just increased fluids, salt, compression tights and as much exercise as I can tolerate. 

,The thought of my HR getting any higher than it already is as I get older does worry me - I also have to admit to being concerned about getting dementia as for most of my life I will have had reduced blood flow to my brain when upright!

[MTRJ75]

I've come to this thread several times to attempt to find the words to ask a useful question in a coherent way, but always end up deleting it. Maybe someone can figure out how to reword it if it's not clear enough, but some (a lot?) of us have doctors (cardiologists/neurologists) who want to help, but aren't experts in this particular specific condition(s) and what they do know may sometimes be outdated. 

So...

1) What's the best way to keep up with the most recent therapies/treatments and tests in the field? 

2) More importantly, what's the best way to help educate our well intentioned doctors without over-whelming them? 

[Pistol]

@MTRJ75 - you worded your questions perfectly! We will bring this questions up at our last session, the roundtable discussion with patients and healthcare workers. Look for it the beginning of November! Thanks for your Input

[Heartbroken]

Hi dear ones,

Why I feel severe pain in my both legs from being squeezed by my compression socks? is from my arthritis or something else?

Note: I have HPOTS.

Thanks.

[Pistol]

@Heartbroken -  I will pass on your question to the webinar team. Personally - I too have HPOTS and cannot wear compression hose due to Raynauds syndrome on my feet ) know that any circulation problems as well as neuropathy and arthritis CAN cause pain while wearing compression hose. Have you checked with your doctor? I do not believe that HPOTS itself would cause pain. It is also a possibility that the hose is not measured well enough and is possibly too tight, this can also happen if your legs swell during the day for any reason. 

I hope this is helpful. Be well!

[MTRJ75]

Got another one if it's not too late. 

This one is a three parter about exercise. 

1) I keep hearing exercise, exercise, exercise as I'm listening to the 2021 DI Conference. What about someone who had been exercising at a moderate rate (not often over-doing it) for most of their life until they couldn't due to this condition? Why didn't the previous lifestyle/exercise regimen keep this from happening and why should we think the result of renewing an exercise program is not going to end in the same failure now? (Again, I'm talking about moderate exercisers, as I understand over-exerting the body consistently can also cause a problem). 

2) Assuming there is a reasonable answer to Q1, where can we find an easy to follow exercise regimen to follow. I'm talking about something with a description of exercises AND a schedule, so that we don't over-push. I have previously downloaded the CHOP program, but had no idea what to do when I was finished reading and ready to start. 

3) I also heard on a talk last year by an physical therapist with POTS experience that those with MCAS issues will generally fail at exercise programs until that's under control. I'm really not sure what my question is here, but this is not an easy thing to get under control. Can someone maybe expand upon this? 

[MTRJ75]

Another one. Brain is working overtime today. This one about weather and why does it affect us so much? 

Sure, 90 degrees or 20 degrees at the extremes make sense, but my worst months (and I've heard the same from others) overall have been October/November. Beautiful fall weather. Why? 

Is it the actual weather or the changes in weather patterns that affect us the most? 

Also, people always recommend sunlight as a remedy to many things, but sunlight now destroys my body. Why is that? 

[Heartbroken]

Thank you so much Pistol. Yes, I do have arthritis and bone spurs. I haven't told my doctor because he doesn't know. 

 MTRJ75 I am the same like you,  October/November are the worst due to barometric pressure.

[Pistol]

@MTRJ75 - unfortunately the presentations have been taped, so we will not be able to ask questions for you. But maybe I can put in my 2 cents: exercise, as with even healthy people, is important for our cardio-vascular health and without it our body will suffer in many ways. Aerobic exercise is recommended for most POTS patients ( to tolerance ) because one of the goals is to oxygenate the body. Personally I was always told to stay as active as I can ( I am extremely exercise intolerant, so for me this is mild house work and a rowing machine ). If you were able to do exercises before POTS and now can do less then do what you can, do not push yourself. Your body tells you what it needs. 

11 hours ago, MTRJ75 said:

This one about weather and why does it affect us so much?

This subject has been often discussed in other posts, and what we have been realizing that there are two theories here on the forum: barometric pressure changes ( a known trigger for POTS because it can alter BP and blood viscosity levels as well as oxygen levels in the blood ) and histamine release. Spring and Fall are high=allergen seasons and histamine release causes vasodilation. This in turn can trigger POTS. Even if you are not even aware that you have allergies you can still have them. 

Both of these factors are triggers for me, especially every fall. I stay mostly indoors during those times and take claritin to avoid the allelrgy symptoms. 

I hope this might be helpful.

[cmep37]

15 hours ago, MTRJ75 said:

What about someone who had been exercising at a moderate rate (not often over-doing it) for most of their life until they couldn't due to this condition?

I hear you @MTRJ75when I first got really symptomatic I was brisk walking at least 3 miles most days plus swimming a couple of times a week.  I wasn't in bad shape.  When I saw my doctor they suspected depression/anxiety and advised me to exercise more - that did not help, just triggered a complete collapse!!  I do try to keep as active as I can but like @Pistol I am very exercise intolerant and a 5-10 minute walk plus an hour's recumbent physio exercises every day is about all I can manage without triggering a flare.  I did try the Levine protocol but I could never make the transition from recumbent to upright exercise without flaring despite trying several times. I felt worse not better doing Levine, I think it was too much for me yet as you say all the experts talk about exercise without really explaining how/what to do!

 

[MikeO]

4 hours ago, Pistol said:

Spring and Fall are high=allergen seasons and histamine release causes vasodilation

Had this conversation with my PCP recently and he agreed that my allergies have aggravated my nOH. We did also talk about the rough go i have with the ACE and ARB drugs. He is onboard that i had an immune response to the ACE at least just by my symptoms. He thinks i was releasing histamine and got the double whammy from the bradykinin which will also acts as a vasodilator. I personally suspect that the combination of the beta-blocker + ACE + allergy flare  sparked a MCAS activation.

28 minutes ago, cmep37 said:

What about someone who had been exercising at a moderate rate (not often over-doing it) for most of their life until they couldn't due to this condition?

@MTRJ75Any exercise that you can tolerate is better than becoming deconditioned.

[MTRJ75]

8 hours ago, Pistol said:

@MTRJ75 - unfortunately the presentations have been taped, so we will not be able to ask questions for you. But maybe I can put in my 2 cents: exercise, as with even healthy people, is important for our cardio-vascular health and without it our body will suffer in many ways. Aerobic exercise is recommended for most POTS patients ( to tolerance ) because one of the goals is to oxygenate the body. Personally I was always told to stay as active as I can ( I am extremely exercise intolerant, so for me this is mild house work and a rowing machine ). If you were able to do exercises before POTS and now can do less then do what you can, do not push yourself. Your body tells you what it needs. 

This subject has been often discussed in other posts, and what we have been realizing that there are two theories here on the forum: barometric pressure changes ( a known trigger for POTS because it can alter BP and blood viscosity levels as well as oxygen levels in the blood ) and histamine release. Spring and Fall are high=allergen seasons and histamine release causes vasodilation. This in turn can trigger POTS. Even if you are not even aware that you have allergies you can still have them. 

Both of these factors are triggers for me, especially every fall. I stay mostly indoors during those times and take claritin to avoid the allelrgy symptoms. 

I hope this might be helpful.

I know the weather thing has been discussed here and agree with your assessment, but was wondering if the doctors would have had anything new or different to add. 

There has been no combination of things successful in controlling my allergies this year. In one respect, it actually helps with the Sjogren's dryness, but it's torture in all others (I mean neurologically, not the sniffles of course).