Jyoti

Fantastic news, Doug! I've been thinking of you and looking forward to hearing how things went.....so glad you are able to make such a happy report.

I always notice a correlation between tachycardia, narrow pulse pressure and high diastolic. That reading pictured looks exactly like many of mine. I don't know about the impact of mitral valve prolapse but in my case the high HR goes with the other two most of the time. Have you learned about the cause of your tachycardia?

A well-earned congratulations, @Sarah Tee! I really hope this is a helpful step toward improving things for you. It is all so resonant for me, and inspiring too. I have developed what I am sure is intracranial hypertension alternating with a cranial leak of CSF fluid. I am confident that it is stenosis or impingement of my internal jugular veins, blocking the outflow of CSF. But of course you go to a doctor and tell them you have it all figured out? You ask for the tests that will either prove or disprove it all? No. Not likely. So I am in the early stages of trying to cajole and nudge various doctors into ordering the tests I need. Anyway--this is about celebrating that you got yours after loads of money spent and yards and yards of patience and strategic craftiness! We look forward to hearing what the tests show.

All the best on Monday and afterward, Doug!

Good luck! When are you scheduled?

Can you inquire, @New Soul, if the pain clinic focuses on mind/body techniques or if they are more likely to prescribe something? Seems like someone would be able to give you some idea about the way they work. This is what I see when I google them: Mayo Clinic's Pain Rehabilitation Center (PRC) helps people with chronic pain return to a more active lifestyle. Teams based at Mayo Clinic's campuses in Arizona, Florida and Minnesota use a rehabilitation approach that incorporates behavioral, physical and occupational therapies to help restore physical activities and improve quality of life. The program also helps participants eliminate the use of pain medications and decrease the use of other medications that can impact health and quality of life in the long run.

I don't want to be discouraging in any way, and I need to say off the bat that I have no first hand experience with their pain clinic. This may be a great thing. I wonder why you are nervous? What are you concerned or uncertain about? Who is sending you? I will share--and remember--this is not necessarily relevant to your situation, but after some consideration I decided to share it in case there was something in my friend's story that shed any light on your concerns. A good friend of mine went to Mayo in Rochester a handful of years ago for a diagnosis and treatment of a rare disorder. They did diagnose and then basically said that their pain clinic was the only thing they could offer her. She was someone with 50 years of daily meditation experience (she started young) and she had many mind-body practices already in use. They did not offer her a lot beyond that. I recall she was somewhat disappointed overall. But if these techniques are new to you, or you want to really learn to implement them successfully, then they may be helpful with migraine and fibro, I'd think.

Great progress, and encouraging to hear about @Karen Elaine! May your trend upward continue.

This is ...well, not great to hear. On your behalf. That is not much up time, but it is so good that the trend is upward. 23 1/2 hours flat is hardly living. I know we are very creative in terms of finding ways to make a life from bed, but that is extreme. I hope along with @MikeO that your time upright continues to increase, particularly after your hip surgery. But keep at the exercise. It sounds like you are making a lot of progress. And it is nice to hear from someone who is not up most of the day. I am, as is obvious, trying to understand what others' experience might look like and I anticipated a range. One thing is clear though from these responses--if you can get the right diagnosis, then you can get at least some treatment/intervention and things do get better. So figuring out what your special stuff is seems to be critical.

I love this! Thanks for the concept. Now...the practice. Thanks @MTRJ75 for detailing your experience when you have over-extended. It can be, I guess. There is a lot of overlap. Teasing the symptoms apart is not easy sometimes. Appreciate everyone's input.

I was just in the ER with the usual: tachycardia, dyspnea, terrible tension and pain in my thorax, shoulders and neck, searing headache in the occiput and behind the eyes, tense and painful jaw. Oftentimes, I have low potassium which triggers the POTS flare, but this time, no. And this time and the last visit to my favorite ED--a few months ago--I had high BP whereas in the past it has always been low. I had wondered--did I flip from neurogenic POTS to adrenergic? What is going on? But today inter cranial hypertension came to mind as a potential culprit and reading about it, I think there is a good chance. People with ME/CFS and hEDS (which populations have a ton of cross-over with dysautonomia folk) have really high rates of sub-clinical IHH. I am going to see if I can get it checked out. I do know of people who had diagnoses of ME/CFS whose symptoms went into remission for up to a month from a lumbar puncture, which would relieve pressure. And as well, of those who symptoms retreated with a CFS patch. There is some connection here...... Any other thoughts or experiences would be very welcome.

And...@Sushi, you do a fair amount of exercise, no? You ride a bike, right? How much of that can you manage?

That was a big difference! I know you weren't sure how it would impact dysautonomia symptoms, but it is wonderful it was so helpful in that regard as well. I'm really interested in the fact that at least the three people who have responded are mostly able to be upright all day. It is adds a lot to my perspective on my own situation. Thanks again.

Again--so appreciative to hear about your experience @Pistol. I have the same symptoms with standing too long. And panic, as well. Though I know the panic is just the body saying--you are about to faint. I have stability in the mornings as well. Often, I really feel almost like I used to before I got sick, but it feels like I get so many heartbeats a day and if I use them up early, that's it! Then, I have to be horizontal to slow things down. I am learning a lot from you guys and it will help inform what I ask for from my doctors going forward. I tend to be stoical and it is hard for me, unless I am totally trashed, to evince a lot of weakness. But I am in a situation where I need to be in bed, without pillows, 19 hours a day and that doesn't seem all that great to me.

That sounds terrible and terribly stressful and draining! The reassuring thing I take from your post is that your oxygen levels are fine on the pulse/ox. So you can know that although you are feeling like your body isn't breathing, it HAS to be in order for the oxygen levels to be ok. It also sounds like something happens to you that happens to most of us--you sense something wrong (and this is an hourly if not more occurrence in my life!) and then you react to it. With fear, naturally. And fear tends to constrict everything. Which means that breathing gets harder, pain gets worse, blood flow stops, etc. Fear can truly (and physically) exacerbate any real physical symptom. I want to say that I have had a taste of what you are talking about. I do have that experience from time to time --where I have to think about breathing. I am not sure what would happen if I just decided not to---would the ANS take over and do it for me as it is supposed to?---but of course we can't really decide not to breathe. We just do it. Anyway--I am not sure if my situation has any relation to yours, but I think I know what you are talking about and it is definitely NOT something that ever happened to me prior to POTS. It kind of makes sense that autonomic dysfunction could lead to that. So....a couple of thoughts. One is that you need strategies that help you stay calm even while this scary thing is going on. And perhaps that is where a therapist or someone in that field might help. Because that is likely the part you have some control over. And then I wonder--what kind of specialist do you have? How curious are they? I would think a dysautonomia specialist would be curious and interested in getting to the bottom of this. Since the cardiologist and neurologist have presumably looked into it and found no organic issues, that should put this right in the lap of a dysautonomia specialist. Finally, you didn't mention your diagnoses. I do not know enough about some of the rarer dysautonomias to have any idea if this might be linked to them. Do your best to stay calm and yes, breathe. Even when your body is not doing it for you.