Sushi

I also have had constipation all my life. My primary way of preventing it is quite high doses of magnesium each night. But the amount I need varies (probably because of what I have eaten that day) so sometimes I get caught.

And then there is the theory of one or more metabolic “traps” that cause dysfunction in basic metabolic processes like production of energy. This is being actively researched but know answers yet.

I also use a cooling vest every summer. There are several types and each has it advantages and disadvantages but all help one cope with high heat.

And then there is neurally mediated hypotension (which I have) where there is no rise in HR, just a fall in BP which also makes you faint. And there seem to be subtypes of NMH also, as my parasympathetic nervous system is in overdrive so I respond well to medication that increases norepinephrine in the synapses. I think many call all types of orthostatic intolerance POTS, but this is not true and in order to treat the patient you need to dig down to the subtype.

@Sarah TeeI see that you are in Australia which brings to mind Greg Page (Wiggles guy with dysautonomia). I don’t know how hard he is to contact but I’d be pretty sure he would have checked out all the dysautonomia-literate doctors in Australia and could perhaps suggest someone. He used to be on a patient forum but that forum is no more.

My autonomic specialist was happy to leave an “as needed” order at a local hospital infusion center. He felt that 2 liters was the minimum “dose” and that it should be given slowly.

4 hours ago, Pistol said:

 it essentially makes your blood "thicker"

Could you say more about that? I have to take a prescription anticoagulant so that could be a problem so me if it affects blood viscosity to a significant degree.

14 hours ago, carissalovesbooks said:

How did you go about seeing an electrophysiologist?

The Heart Rhythm Society is the professional group that most electrophysiologists belong to. You can find an EP near you who is a fellow of the society here: https://www.hrsonline.org/find-a-specialist

Depending on your insurance you can either self-refer or ask your cardiologist or GP to refer you. Good luck!

On 5/11/2021 at 4:26 PM, carissalovesbooks said:

That's amazing! I've never heard of anything like that. I'd like to ask my docs about it, but they don't even seem to like doing the bare minimum

Are you seeing an electrophysiologist? They are the ones who are interested in arrhythmias. If you can feel them yourself you could invest in a little Kardia Mobile. They cost about $80 and take a medical grade ECG paired with a phone. They are about the size of a credit card and I always carry one with me so that I can record any weirdness and email it to my electrophysiologist. Great technology and they give you a computer generated analysis of your episode.

I know that this is one of the last options in the treatment line but it works for me. I had other reasons for it to be prescribed but I have a model of pacemaker that not only prevents my HR from bottoming out but also stops the PACs and PVCs that usually lead into tachy. It feels so good to have a steady, reliable beat. I saw my electrophysiologist yesterday and also had a device check and it is heading off PACs many times each day. It paces me 98% of the time. There is only one model with this feature I believe—the Abbot Assure. I was eligible for it because I also had chronotropic incompetence and pauses, but just to say that if any EP suggests a pacemaker don’t freak, this one has changed my life.

Could you get a referral to an electrophysiologist? They are cardiologists who specialize in the electrical function of the heart and your HR comes from electrical signals. They are the ones to see for any type of heart rhythm problem. I had a similar HR pattern and it turned out to be tachy-Brady syndrome or sick sinus syndrome which is very treatable. If a cardiologist gave you a heart monitor for a couple of weeks, they would have an exact recording of what is happening. These monitors are one or more electrodes that stick on your chest with a method of broadcasting the data to a device like a cell phone which then sends it to your doctor and the monitoring company. I really hope you can convince your doctor to investigate further as living with HR fluctuations like yours is neither easy nor safe—you could pass out and hit your head!

43 minutes ago, aec8857 said:

how many of you have one/any other visible medical device and how do you deal with it?

I really think that is your personal choice! I have a pacemaker and the scar and bulge are obvious but I don't make any effort to hide them. I think it just depends on how you feel about it yourself--medical devices are not shameful in any way. It is just like the decision someone who is getting chemo and loses their hair must make--should they cover their head, wear a wig? Whatever makes them feel comfortable. Best wishes!

6 hours ago, p8d said:

@Sushi Thank you for posting Dr Klimas’s advice. May I ask how severe your MCAS is? I have increased some of my supplements and plan to take Zyrtec anyway but I  think I have a relatively mild form of it. 

I have very mild MCAS—just a tendency to get hives and itches from food, insect bites and a few medications. I think that Dr. Klimas has been implying that mast cell activation could be behind some of our symptoms that don’t seem to be related to it and that the vaccine had a potential to create mast cell activation for some time after vaccination.

4 hours ago, Sarah91 said:

'm nervous (re: terrified) about getting my second dose but having a really hard time finding any doctors who see enough Dysautonomia patients to make a good recommendation. Does 1) Anyone know of a doctor I could consult with on this in the next two weeks (my appt is 3/24)? 2) Anyone know if Dysautonomia International or another entity tracks reactions/has guidance?

Have you seen Dr. Nancy Klimas’s comments and recommendations? https://www.nova.edu/nim/To-Vaccinate-or-Not-with-MECFS.html
I have had both doses of Pfizer. After the first I increased my mitigation strategies for the second: I started Zyrtec several days before and took it for about 10 days after as Dr. Klimas felt that subtle mast cell activation could continue for some time and cause an exacerbation of our regular symptoms. I also took higher doses of the supplements she suggested and I greatly increased fluids and electrolytes, drinking a liter of Pedialyte after the vaccination. I also added Epsom salts baths.For whatever reasons my reaction to the second dose was easier than the first—no extreme symptoms but couldn’t peel myself off the couch the next day. 
 

There is a Facebook group for ME/CFS patients to discuss their reactions to the vaccines—most all have dysautonomia. Good luck! After both doses I could tell that my immune system was highly activated for about a week.

1 hour ago, TorturedSoul said:

Thank You everyone. @Sushihe did say that the sympathetic acted appropriately to the Valsalva (it increased) but that the parasympathetic increased as well which it shouldn't have. So would an SNRI still be appropriate? 

As I remember, my valsalva test was about the only normal part of my autonomic testing. It was in all the other parts of testing that the parasympathetic was too strong. Whether an SNRI would be appropriate for an individual depends on assessing a whole array of autonomic tests—so your doc needs to do some more investigation if the valsalva was the only test he did. Hope this gets figured out.

16 hours ago, Jyoti said:

When I google all I find are celebrations of how good it is for people in our situation.  I was wondering if anyone here has any experiences with it--good, bad, indifferent--that they would care to share?

I tried it for a number of months but could not tolerate either the standing or the arm movements. The teacher even had me practice in a chair, but I could not tolerate it. Responses to it will be individual, but it didn’t work for me. 

15 hours ago, TorturedSoul said:

Thank you!! Still confused about what excessive parasympathetic response actually means. I tried to research it and I read the article you posted but till confused. I have a lot to sort through. Thank you again 

The parasympathetic and sympathetic aspects of the autonomic nervous system each regulate different functions. We get problems when one tries to take over in a situation it is not supposed to control. My parasympathetic system dominates when the sympathetic should dominate. For me this results in orthostatic intolerance. I did well with norepinephrine reuptake inhibitors that increase sympathetic response. But we are all different and it looks like your neurologist has some homework to do. Perhaps he would be willing to do a consult with an autonomic specialist to get more understanding of your test results.

@angelloz I gather your chest CT was normal? I was having similar symptoms and had fluid in my lungs--probably as a result of severe mitral valve regurgitation that snuck up on me. It was discovered in a routine echocardiogram. Hope your resolves soon.

Just a note: some of us, probably the minority, have a vagus nerve that is too activated. I have tried to find out how a vagus nerve stimulator would affect those like me? My parasympathetic system is dominant.

I had my first dose of the Pfizer on Wednesday. Sore arm, then overnight slight headache, sinus congestion and chills. Fine the next day. Yay!

1 hour ago, MTRJ75 said:

From Australia or to Australia. I can't find where they're located. 

Brigham and Women’s hospital in Boston. There is another researcher there, Dr. David Systrom, doing interesting work on exercise intolerance.

6 hours ago, cmep37 said:

Here is a link to his exercise programme case you haven't seen it

Microsoft Word - CHOP_Modified_Dallas_POTS_Exercise_Program.docx (dysautonomiainternational.org)

I completed 4 months of modified cardiac rehab and was able to double my exercise capacity but the program designed for me was much, much less strenuous than the one linked above. I was really impressed with the knowledge of the doctors and exercise physiologists involved. I only used recumbent machines (nothing upright except one lap around the gym before and after a session). They had me rest for 5 minutes after each 5 minutes of exercise and checked pulse and O2 levels after each 5 minutes. They also had me do stretches and to only exercise twice a week instead of the usual three times. It really showed me that I could gain some strength if an exercise program was designed for a dysautonomia patient and not standardized. My electrophysiologist told me to educate the rehab staff and they were very receptive.

To "get the vaccine or not" is a question that many of us will have to face. I was wondering if anyone who sees an autonomic specialist has raised this question with their doctor? Since this is a brand new type of vaccine we can't really extrapolate from our experiences with conventional vaccines. Thoughts?

18 hours ago, CallieAndToby22 said:

So they've received everything at Vanderbilt but said it would be 4 months before an appt. I really can't wait that long, especially the shape I'm in, it's affecting everybody, and I'm miserable. I do need some sort of accurate diagnosis. I live in North Florida so Georgia is even doable. I know Dr. Rowe personally but he's a pediatric otherwise I'd see him at John Hopkins. 

I guess you’ve checked with Dr. Randy Thompson to see if he is taking appointments?

5 hours ago, MTRJ75 said:

I know many of us believe there are many different triggers for our ectopics/PVCs/skipzies/whatever you want to call them, but has there ever been a mechanism discovered that connects them to allergies. 

Or perhaps something you are taking to combat allergies? Decongestants can do this (ones like sudafed). Strangely, I discovered after much trial that fish oil capsules give me palps. I checked in on an Afib forum and some others also reported this. 

On 10/31/2020 at 5:49 AM, Muon said:

Once every 10 seconds for the last two days in rest (sitting), so it's ~6/min (if I'm using a stopwatch, very subjective, age=35 in 2020). This needs to be objectified by measuring devices and for longer periods though. Sometimes breathing just stalls and have to remind myself to keep breathing. Thanks for this thread now I know it's far below normal. There also seems to be something going on with my heart, not sure what.

Have you ever had a sleep study to check for apnea? There are a number of medically validated devices for home sleep studies that give a great deal of information. My cardiologist prescribed one of these and it is read and signed by a doctor who is a sleep specialist. Since apnea is related to several medical conditions and can usually be successfully treated, it is a very helpful screening test.