Sushi

3 hours ago, Knellie said:

  It is 12, but it has been flagged before by some pediatricians I have been to.

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. 

5 hours ago, Muon said:

A potential new pathophysiology for POTS?

Mechanism of choline deficiency and membrane alteration in postural orthostatic tachycardia syndrome primary skin fibroblasts

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. 

17 hours ago, beastwiththeleast said:

understand that the illnesses discussed here often present with fatigue and wanted to ask the same: Does anyone else have experience with this? Am I nuts for thinking that this is weird? I've been on these for months and only feel worse (which is normal for me). Are people with CFS/ME/POTS usually put on medication other than antidepressants?

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.

2 hours ago, Ksheo said:

Can your pulse pressure be too low? Mine sometimes can be less than 20 between the two readings .

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.

12 hours ago, Shungita said:

Any dr I’ve ever mentioned it to has dismissed me and my only diagnosis in 30 years has been anxiety (I’m not!) and attention seeking (I’m not). 

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

4 hours ago, Robert J said:

So now I take life a day at a time. I treasure good days and I accommodate the bad ones. I was a planner but now I am more spontaneous. I must live life more mindfully and aware - a sort of Zen approach. The point is changing some assumptions and expectations of life can ease some of the mental stress. 

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.

On 9/7/2020 at 6:06 AM, cmep37 said:

Has anyone got one for bradycardia?  If so how old are you (I'm 42) and did it help?  What effect did it have on your tachycardia?

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. 

4 hours ago, Daryl Ann said:

For years I have been suffering with low blood pressure after eating, especially after breakfast.  I have talked to numerous doctors, cardiologist and neurologists alike.  As I age, the problem has become worse and this summer my activities have been severely limited.  Since I have had difficult side effects with the traditional medications prescribed for dysautonomia,  I searched the internet for some lifestyle changes that might help.  I found an article summarizing research published in the Journal of gerontology and biological sciences in 2001 that suggested a low carb diet.  I have changed my eating habits around breakfast and lunch and have had remarkable results so far.  Another suggestion from the research was to keep moving after eating meals.  That, too, has helped.  I feel like I have my life back!  After searching for answers for so long, I wanted to share what seems like a simple remedy.

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!

19 hours ago, Derek1987 said:

was also just diagnosed with Heds. Not sure if this relates. 

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.

On 8/8/2020 at 6:23 AM, p8d said:

@Sushi HBOT sounds interesting. Can you please post or PM me where you got it and cost? What do you expect it to help with? Any reason why high barometric pressure helps? I feel awful when it’s falling or low. Thanks.

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. 

9 hours ago, Pistol said:

barometric pressure changes ( a big one for me )

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.

17 hours ago, Fujitsu said:

Anyone here taking Klonopin and if so how much/how often and is it helping? I started taking 0.5mg a day and it completely diminishes my pots symptoms. My mom has also had these symptoms most of her life and has taken Xanax as needed and has not become addicted. Also her pots symptoms disappeared after menopause, so this whole condition has a lot to do with hormones. I know they say it's addictive etc, but my psychiatrist said such a low dose taken twice a day won't cause an addiction. Just wanted to hear your klonopin stories and if it's helped. I'd rather take klonopin than a ton of other meds:/

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.

2 hours ago, POTSius said:

Thanks for the helpful answers

@Sushi @RecipeForDisaster (and anyone else with experience coming off these drugs)

Did you notice any sort of withdrawal issues coming off the meds when you had to stop them?

 

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. 

3 hours ago, VIVIANPC said:

HI CAN YOU PLEASE GIVE ME THE INFORMATION ABOUT THE MEDICAL MARIJUANA CARD I'M SO IN NEED OF SOMETHING THAT CALM THE NAUSEA PAIN AND VOMITING I TRY A LOT OF MEDICINES AND NOTHING SEEN TO WORK. 

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.

3 hours ago, JFreeer said:

I guess my question is what makes this different than other dysautonomia diagnoses? I did stand on tilt table for 36 minutes and finally had a very low bp episode which felt horrible. Is it the length of time I stood that makes it a differential diagnosis? 

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. 

3 hours ago, Nin said:

I've been feeling breathless for about a week now. This is something that comes and goes. I can have months of not feeling like this and then it's back again. It's like I can't get enough air into my lungs

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. 

4 hours ago, Nin said:

Also I've been getting sore throats since November 2019. Do anybody get sore throat on and off. Always seem to get it when I'm having bad day's

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. 

21 hours ago, Dale H said:

'm sure the tilt table will confirm POTS but will the results make a meaningful change in my treatment which is currently .2mg florinef daily, 6000mg sodium daily, 3 liters clear water daily and exercise every other day.

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.

21 hours ago, Dale H said:

Also the tilt table I'm scheduled for is a weight bearing tilt table, not the kind where you are strapped in so there is no weight bearing by your legs. Does this make a difference in results?

I’ve also never heard of anything but a weight bearing test—the straps are just to help you stay upright without moving.

On 6/23/2020 at 12:19 PM, MTRJ75 said:

I didn't have enough funds to go back for a second shot last summer. 

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?