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Jyoti

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Everything posted by Jyoti

  1. 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?
  2. 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.
  3. All the best on Monday and afterward, Doug!
  4. Good luck! When are you scheduled?
  5. 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.
  6. 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.
  7. Great progress, and encouraging to hear about @Karen Elaine! May your trend upward continue.
  8. 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.
  9. 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.
  10. 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.
  11. And...@Sushi, you do a fair amount of exercise, no? You ride a bike, right? How much of that can you manage?
  12. 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.
  13. 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.
  14. 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.
  15. This is incredible to hear. And helpful. Thank you! So happy to know that you do have that much capacity when not in a flare! I think I must be in a kind of constant flare where I can with careful management do the minimum of the things I need to do. I have been diagnosed with ME/CFS as well. Sometimes I wonder if that is accurate, if perhaps I simply have POTS. But perhaps it contributes to my never ending lack of resiliency. In any case, this is MOST useful to hear, from both of you and from anyone else who wishes to share. I really appreciate it.
  16. @MTRJ75--that is helpful for me to hear. And I totally relate to What happens when you are up too long? What are your symptoms, if you don't mind my asking?
  17. What a great year, then. Even hip pain gone! Amazing.
  18. That is FANTASTIC @MikeO. We have to celebrate that a LOT! Because ultimately, any improvement for any of us makes improvement for all of us a little more within the realm of possibility. Do you think it was primarily dealing with the glucose issues?
  19. I've been reading stuff written by doctors, researchers and patients--on dysautonomia as well as ME-- for ages and occasionallyI think I have a fledgling handle on the facts. But sometimes, I wonder how my experience compares to others--subjectively. Obviously, we can never fully know another's experience, but I started to consider how many hours a day I can be upright. That seems like a fairly straightforward measure, though of course there are plenty of fun add-ons that are not included (like GI distress, dyspnea, blood pressure, etc.). So just asking: how many hours a day are you able to be upright, either sitting, standing or moving around? On average, naturally. And not in a flare I am finding that my 'good' pattern looks like this: four-five hours of being up during which time I can do a lot of what I once was able to do, though brain fog prevents the cognitive activities from being as fruitful. I can clean, read, talk on the phone, walk or ride a stationary bike, buy groceries, go to appointments. Cooking is hardest--standing still will tank me almost every time. But after those four or five hours, I need to be flat on my back for the duration. Usually even getting up for food or water or the bathroom is treacherous. It is odd to me how I seem to cross a line between feeling relatively normal to feeling just awful. I do try to anticipate that moment (with help from my Garmin's Body Battery) but often don't get it quite right. Thanks in advance for sharing your time upright--how long, how good and what happens when you are up too long.
  20. Same. It is very mysterious at times....what activates the SNS and what doesn't or does less so..... First of all, the Apollo would NEVER put me to sleep on its own. But it is one of the things I use every night to get to sleep, and it is the most helpful when I wake up and can't go back to sleep (at least twice and often more often, most nights). It uses a range of sound waves which create vibrations to stimulate different states. I have only taken advantage of a few of these programs--sleep, relaxation (I use this one for a half hour BEFORE I want to go to sleep), recover (which does help bring down my heart rate a bit when I am too ramped up) and energize (they say--when you need an espresso). My daughter uses it all the time for focus (I suppose I could use some help with that these days as well😛). It is a wearable, obviously. I wear it on my ankle at night. On my wrist, I can hear the sound (it is VERY minimal, but when I put my wrist under my head, I can hear something) which doesn't help me sleep. It is expensive. My sister and I have a joke about ALL the devices out there that are priced at $350. Someone did a focus group and decided that the desperate amongst us would go that high, I fear. Anyway--it runs about that much, though they do have sales a couple times a year when it is $300. The good thing is that there is a full refund guaranteed up to 30 days, so if it doesn't do it for you, you are only out the postage to return it. Someone on Phoenix Rising was intrigued but didn't have the money for it so she rigged up a substitute using some cloth and a cheap vibrator! She found it really lessened her pain, though there was no good way to strap it on. There is something to it. I don't know if it will work for you, but it is one of those things I'd be kind of lost without. I've had it for two years and used it every night. Still going strong.
  21. That is fascinating! it seems to me that just as there are a thousand things that humans do not know definitely about the science of our bodies (we are exhibit A!) there are many other factors that influence our lives that remain currently unseen. Quantum physics has revealed realities that were long experienced (the energetic nature of everything, for instance) but were poo-pooed as nonsense until science saw them. Faith in the impact that the heavens has on us is almost as old as our species...why would there not be some veracity there? On the other hand....oh ugh! Another factor to consider when things go south! At least this one doesn't make me like I made a mistake, did too much, ate the wrong thing, etc. I actually love the idea of being able to say: I'm in a flare due to Mercury's backward movement this week. People already think I am crazy.....
  22. Yes...sending best wishes for a quick uptick for you, @Pistol! And for what it is worth, I don't think I can do anything useful in terms of dealing with other people's blindness when I am in a flare or a crash. I just wait till I feel a little better. Sometimes I think of more successful ways to explain and once in a while, I know the relationship is not really a good one if the person cannot find a way to believe me when I tell them I am sick. But none-the-less, it is a painful part of this condition and a mostly invisible one, along with a lot of the dysfunction itself. It is why a forum like this is so vital--if we did not have one another, the isolation of living in these bodies would be unbearable sometimes. So...know that the work you do here is much appreciated.
  23. Oh jeez.....do I know what you are talking about! I just hate the rigidity that dictates this part of my life (and there are others just as circumscribed--we are talking about the end of the day here...) but if I try to deviate or 'cheat' a little, boy do I pay. It is crazy that a phone call at 6pm--a happy and welcome call in most regards except for the time--results in an almost entirely sleepless night. Same with eating late for me too. And if for some reason, I am obliged to be upright any later than 7pm, it's curtains for the night. I theorize, like you @Machair, that once the blood has stopped getting to my head in any normal way, the adrenaline kicks in to save the day. If I am up and can't get flat, it's the only option my body has at its disposal. I'm sorry you have those awful adrenaline surges. I have ME as well as POTS and NMS, btw. I have a raft of things that DO get me pretty consistently good sleep if I am in bed before pumpkin time. I use an Apollo Neuro device religiously as well as THC, melatonin, chamomile flower extract and a sleep patch. I have (more rigidity) a timed routine when I take/apply them all that I have developed over the years and I notice on my Visible app data that it works pretty well 6 nights out of 7. I'm feeling pretty good about it in general, but I definitely went off course this afternoon and so this thread is timely
  24. @Sea otter--I am going to leave you an answer here so if it is ever of value to anyone else it will be visible. I was tested for: AChR binding Abs, AChR blocking Abs, and AChR modulating Abs. Looking at the results again, I am interested to see that my blocking antibodies were on the border of borderline. Yes, they came in negative (0-25) at 23. From what I have read, the blocking and binding are often both present together. My binding look very low normal, so ....? Yours were measured on a different scale (US/Europe) but you were thinking that perhaps there was some significance beyond the usual brush-off? Also, I find it of interest that the only med which has worked for me (and I have tried a good handful) is Mestinon, a cholinesterase inhibitor--it stops the acetylcholine from breaking down too quickly. Or that is my lay understanding of it. Which would kind of make sense (???) if I have (some, just enough to qualify as 'positive): Blocking antibodies may sit on the receptors, preventing acetylcholine from binding. I do not have a biochemically adept mind, but that sounds to me like they would prevent the acetylcholine from doing its job. Do you know if you were tested for each of the three separately? Check this out: https://www.testing.com/tests/acetylcholine-receptor-achr-antibody/ I just want to add that I have seen numerous situations where blood tests looked ok--in the normal range--and yet were not normal for me. (For instance, the normal range for potassium tends to be from 3.5-5.3 and I get symptoms of low potassium when my blood levels drop to 4.2.) If '1' is at all borderline in terms of range, I would see if there is a way to investigate further.
  25. @Caterpilly--please update us as you gather more information. All good wishes that it helps. A lot! And @MTRJ75--let us know if you get the Pulsetto and whether you get any joy of it. Also....hoping it does something great for you.
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