Sushi

My fitbit tracks breaths per minute and in the last month it varies between 12 and 15. Of course I don't know how accurate it is but medical sleep studies showed a similar rate and my cardiologist didn't flag it.

I know the patient in this study and indeed, being treated with choline made a big difference though dosing took a lot of experimentation. This person had a specific genetic profile involved so it is probably not a helpful treatment for those with normal choline metabolisation.

I have a diagnosis of CFS as well as dysautonomia and my autonomic specialist did put me on Strattera and Cymbalta for a period but not because of depression, rather to help regulate neurotransmitters that affected orthostatic intolerance. As @Pistolmentioned, check what diagnoses you have been given. And yes, CFS patients are often given other medications though there is no one medication that is helpful for all. I’ve never heard of any one medication that was helpful for more than half of patients, so specialists (there are very few) try patients on different medications and other protocols (like careful pacing) looking for a positive response. An example of one of the medications that is often tried is low dose (3 - 4 mg) naltrexone. Many patients are initially given a CFS diagnosis but later it is found that something else is going on and sometimes that something else is more treatable. Best wishes.

Yes, the “normal” range is between 40 and 60 but low pulse pressure can be common among those of us with dysautonomia. On my tilt table test my pulse pressure went down to 8 and they stopped the test. It is definitely something to discuss with your autonomic specialist or cardiologist/electrophysiologist.

My autonomic specialist had me track this and I definitely also have this problem. He regarded it as a marker for Dysautonomia.

Well said! Life is very different these days, but it is possible to adjust and find new ways of experiencing connectedness and satisfaction—and even of working. The Americans with Disabilities Act is our friend here. And, strangely, time helps, in that I don’t even remember what my life used to be. Until we have more research leading to more treatments, the only variable is US—and for me that has meant finding a new way to live within my limitations. Without the internet...we’ll I can’t even think how life would be.

I got a pacemaker for brady-tachy or sick sinus syndrome. I don't have POTS but rather neurally mediated hypotension, though I was getting both bradycardia and tachycardia and also pauses--which are very unnerving. The newest pacemakers have sophisticated algorithms and mine will try to outpace the premature atrial beats that can lead to arrhythmias and tachycardia. Since getting a pacemaker (2 years ago) I have not had any tachycardia and needless to say, no bradycardia! No idea how a classic POTS patient's tachy would respond but for me, no more tachy, just a steady 70 beats per minute (we experimented with different base rates and 70 feels best for me in relation to OI). Pacemaker implantation, while not a serious or dangerous procedure, is something for you and your cardiologist to weigh carefully. It is minor surgery and takes about 6 weeks to be able to move freely without restrictions. For me, it was marvellous--you are awake but slightly sedated during the procedure and as soon as she connected the leads to the pacemaker it was such a relief--no more, thumps, bumps and pauses.

That makes sense since many of us get splanchnic (abdominal) pooling of blood and eating carbs makes it worse. I have asked into a restaurant, had a high carb meal and then was unable to walk out!

Do you mean hypermobile EDS? If so, many of us have it along with Dysautonomia though I don’t think there is definitive research on why. I too have hypermobile EDS.

@RM17 Thanks for telling your story—and in a very engaging way that we can all relate to. Sounds like you struck gold with your first cardiologist—you are lucky as many cardiologists know nothing about POTS. Did she mention compression garments—specifically compression knee socks which are easy to wear? They help many of us a great deal. I need to put them on as I get up from bed and I wear them all day until I return to bed. I could not manage to stand and walk without them, but of course, this is individual. Good luck with your treatment. And, by the way, it is not true that POTS and Dysautonomia are conditions that mainly plague teenage girls and menopausal women—thousands of men and women of all ages are hit with it, often after a viral illness. Keep us posted on your progress.

Mild HBOT (soft chamber) will be an experiment for me. Others have found it helpful but there is no real data yet. I belong to a Facebook group where patients with different diagnoses discuss their experiences with it. It is thought to improve immune function, help with inflammation, migraines, etc. Since it is an experiment for me, a friend is lending me their unit to try so that I can discover if it helps before laying out a considerable amount of money. I do feel better at high barometric pressure so I'm hoping that this is a good indication.

Like others, mornings are the worst for me and I tend to stay up late because I feel better later in the day. I feel much better when the barometric pressure is high. I am about to experiment with this by trying mild HBOT, a soft-chamber that can be used at home. It is pressured to 1.3 atmospheres. It can be used with out without supplemental oxygen from a concentrator. Has anyone else tried this?

A poor man’s tilt table test can be really helpful in identifying the basics: whether you have just orthostatic hypertension or whether you also have POTS. It is easy to do at home and would be one step toward identifying your next step!

My diagnosis isn’t POTS but rather neurally mediated hypotension. My Dysautonomia doctor prescribed Strattera, an SNRI, and it worked extremely well for me though I had to start with taking a third of a capsule every other day and it took about a month to increase to a capsule twice per day. It definitely did NOT reset my ANS though, as as soon as my dose wore off symptoms returned. I think this drug worked for me because I tested as parasympatheticly dominant.

I take CoQ10 and haven’t noticed an effect on BP, but of course individuals will respond differently.

A couple of things: some doctors feel that klonopin can tamp down an overactive CNS and at times when I have had severe symptoms, it did seem to do that. I’m not talking about anxiety but the symptoms of an overactive CNS that some get from Dysautonomia. That said, it is addictive even at low doses for most people. .5 mg twice a day is not a very low dose and is likely to lead to dependence/addiction, so it is good to be very cautious in weighing pros and cons. Re: menopause and Dysautonomia—passing through it did not improve my Dysautonomia at all, though it seems to for some.

I wouldn’t call it withdrawal but yes, it didn’t feel great when the dose was wearing off, but that was only for a couple of hours. I never took more than 5 mg and usually mor like 2.5 mg.

@POTSius When I was taking a low dose of Adderall it did help me with OI. I no longer take it because I have moved and don’t have a doctor to prescribe it.

I do react to the epinephrine in the drops they use to dilate the eyes. As others have said, we all respond differently. I have Neurally mediated hypotension rather than POTS. I need to avoid epinephrine in local anesthetics too.

If you are in the US, qualification depends on what state you are in. Some states do not have a medical cannabis program but each state that does has different requirements to qualify. You can easily check your state’s requirements on the Internet. In my state, medical cannabis dispensaries can refer you to a doctor or your primary care can fill out the paperwork.

That you didn't get a POTS diagnosis. I have more or less the same diagnosis though I have time to sit down quickly before I faint. Were you to have POTS, your HR would have gone up 30 or more points. On my TTT I had a short (about 15 minutes) tilt, then some other autonomic tests done lying, and then a long tilt. After 30 some minutes, my BP went to 88/80 and I did feel awful, awful and asked to end the tilt. I think that my official diagnosis is Neurally Mediated Hypotension.

My autonomic specialist prescribed adderall for me at low doses (about 5 mg as I remember). It was indeed helpful. At low doses it didn't seem to have many side-effects though "coming down" from it did not feel great. In the end I used it only when I had to do a task that required extra energy or concentration, as I have heard of people becoming tolerant to it and needing to raise the dose. One downside is that it is hard to get a doctor to prescribe it and if they do, they have to write a paper script each month rather than prescribing it electronically. He also had me try ritalin but, for me, Adderall was more comfortable as it combines four types of amphetamine salts, each with a different half life.

Are you seeing a cardiologist/electrophysiologist? Often dysautonomia creates cardiac like symptoms though they are often secondary. I have found it really important to have an electrophysiologist on board to help pin down the cause of various symptoms. There is also a cross-over between dysautonomia and Chronic Fatigue Syndrome (Myalgic Encephalomyelitis). I have both and, for me, sore throats seem more associated with the ME/CFS aspect of the illness.

It could well make a difference if you have a comprehensive TTT. (not just the standing in place for 45 minutes). During my testing they did about 5 other tests designed to monitor the ANS when it is stressed by certain things (for instance a grip test among others). All this produced a lot of data on the functioning of the ANS and if you have a good specialist, the results could well change your treatment—mine did. Good ANS testing (or even just an extended upright tilt) is difficult as it will bring out your worst symptoms so make sure that you have the right to stop the test if it is too much and that you have a recovery plan. I stopped the test when my BP went to 88/80. I’ve also never heard of anything but a weight bearing test—the straps are just to help you stay upright without moving.

That is an interesting article. I wish that it were less expensive and that you could try a second shot. Do you mind telling us how much this therapy costs?