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Hi bebe, Prayers and best wishes for you and your daughter. If it helps think about it this way - she already had what she had before yesterday but now they (almost) know what it is so they can make it better.

Gypsy - I'm so happy to hear about your recovery. So you would really attribute it to Earthing? Have you measured your standing heart rates before and after the week of Earthing? Keep up the recovery!

I wouldn't trust Livestrong as a source for anything important... It's just not authoritatively edited.

What is DDAVP?

Hi Alex, I think the large diastolic standing increases maybe correlated with my use of midodrine, but I don't have enough standing blood pressures pre-midodrine to be sure. Thanks for the tips! The hypovolemia also sounds likely to me since I do have very low supine diastolic since this started.

Hi Courtney. I also have heart conditions related to the Aorta, so I can sympathize. I also developed POTS. Keep us posted. In my case the congenital heart doctors say it's unrelated... But I have my fears. Prayers for you and your young family.

Does anyone else have this? Was a doctor able to explain it to you? My sitting blood pressures of about 112/60 will consistently see my diastolic rise to ~80 on standing/walking, while my systolic will only raise about 10-20 points. My only thought is it is related to my general diastolic dysfunction, or a compensatory mechanism for my diastolic being generally low sitting/supine. Or maybe it's just the dysautonomia.

What is NMH?

Chris if you read the known drug interaction above... You should be careful increasing midodrine, especially when you're at 39 while awake.

My heart rate has been extremely low - low 50s in the morning and at night and even sometimes during the day. Even seen 40s at some times. I am on 12.5 mg atenolol and now 7.5 mg 3x a day midodrine. Apparently there IS a serious interaction between the two. I am going to gradually try lowering my midodrine a bit. I've strated by lowering my last dose to 5 mg. atenolol ↔ midodrineApplies to: atenolol, midodrine MONITOR: Midodrine, an alpha-1 adrenergic agent may lead to bradycardia if administered concomitantly with any agent that directly or indirectly reduces heart rate. This may be most important for beta blockers and tricyclic antidepressants. MANAGEMENT: Patients should be advised to discontinue midodrine if they experience signs or symptoms of decreased heart rate (i.e., slow pulse, dizziness, syncope, cardiac awareness) and to contact their provider for reevaluation.

Andy, exercise biking definitely seems to help some people with POTS. Let us know what comes of your appointment.

With the terrible esophagus/GERD problems I'm having, constant burping, and my inability to take PPIs due to severe headaches (and even wondering if it was the instigator in starting my POTS) I'm trying famotidine instead of ranitidine. I know they have the same mechanism of action. I know famotidine has less drug interactions than ranitidine (for example, it does not interact with midodrine). Why do so many use ranitidine instead of famotidine? Why do all of the MCAS people use ranitidine instead of famotidine it seems?

Yeah thanks for that! That's a really good pointer and that maybe what I'm having. A bunch of the pain is between my two shoulder blades - but I'm pretty sure it's not heart related seeing as it seems to come after swallowing food and similar to the pain at the back of the mouth/neck. Don't need that

Is anybody dealing with this as a result of their autonomic dysfunction? I regurgitate even water a little bit and it's been getting worse over the past couple of weeks since I started the atenolol probably, but that maybe completely unrelated. Since my illness started I've been dealing with extreme GERD that seemed better since I started Zantac and Carafate a couple months ago but now seems back, although I'm not sure it is actually the source of the pain since it doesn't feel as much like a burning pain as it does a sharp (not severe though) pain. It is in the back of my mouth (beginning of throat) and at various points down the esophagus. My PCP says it's not likely a stricture since both liquid and solid are problematic.

I don't know your personal situation, but to answer your general question - yes a lot of people with more mild pots do seem to get better with even non-medical interventions (drastically increased fluid intake, salt, exercise, etc). Some googling will help you find these interventions. Best wishes!

Sheila, did the fluids in the ER help you? If so drink electrolytes as much as you can. Force yourself to drink two liters of Gatorade and see if it helps. I am so sorry for how bad you are feeling. Many of us can relate. If you feel your life is in immediate danger, please do go to the ER. Do you have a pulse ox and blood pressure machine so you can check your vitals at home? I hope you get through this extremely difficult period and find some help. Sending positive wishes your way.

Wow that actually is very exciting!

Very well researched article... But is it tying too many symptoms together?

I want to clarify, re-reading my post, that I do not support the article or any of the conclusions that it draws. I just was trying to say that recumbant exercise is one of my only hopes for improvement in the short term.

The approach of the community to this article seems to require a difficult balance. Ancedotally, reading all of the stories on here and hearing stories from doctors, I haven't heard of a single person who has gotten better from POTS without significant cardiac exercise. Levine's protocol, which emphasizes the unique exercise requirements of people with POTS, seems to at least be a step in the right direction (at the very least as a guide for exercise to patients and physical therapists). Yet, it in itself is not a cure. And it certainly has led to a lot of trouble and misunderstanding for those with POTS since it gives outsiders the wrong impression. Overall, I'd say it's a net negative - but at least it reminds all of us to try our best to do more and more activity each day as we can tolerate... I know some of us can't tolerate any at all - and I know the amount we can tolerate can be fleeting - but we must try right? Because at least for me, it seems like no medical cure is coming my way anytime soon - so this is one of the only hopes for improvement I've got - and I need hope... and since cardiac exercise works at least partially for most... it gives me some hope.

mo% and ba% are the percent of your white blood cells that are various subtypes (monocytes and basophils). If it were me I'd be a little concerned but if they are only slightly low or off I wouldn't be too concerned. If they are low again during your next blood test I would be more concerned. I think when things are slightly off (in my personal mind) it's more about trends than about an individual result, but that's just me and I'm not a doctor so I can't give you any medical advice, just how I would approach it.

I have seen Dr. Diana's videos and a couple papers posted on here suggesting it as a potential treatment. But any actual treatment results that are well documented or small studies for dysautonomia?

I read this a while ago. There is definitely a subset of the POTS population that is due to deconditioning - we know this from NASA and the effects that astronauts have when they come back to land. However, I think it's very few of us that are so bad to be on here. I know in my case, personally, I aced a stress test last week... and I was also told just a month ago in the hospital that "some of my problem is due to deconditioning, but not the core of it". Dr. Levine's work just makes this myth harder to deal with and even more prevalent - yet there is no doubt that exercise seems to help a lot of us, even those that are not ill due to deconditioning. For that reason, his exercise program's recommendations are worth all of our exploration. I am about to ask my doctor to contact his secretary (as they specified) for a copy.

I thought this poll would be interesting. Please only answer the last question if you have cold extremities. Personally, I have a cold right hand and cold feet (and sometimes my teeth chatter and I'm cold all over even).

Anyone else have this and/or know what it is? I started having it every night when I put my head on the pillow and it never lets up making it hard to sleep. I can feel actual blood vessels pulsing against the pillow and I can feel them with my hand. Very annoying! If I turn my head then I have it there... My blood pressure in bed is rather low - 105/55 currently, pulse 52