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  1. Today
  2. Matt, I will share an experience I had with a 24 hour Holter monitor and a ph test (to measure ph in esophagus), each done at different times. I get ectopics too (PVCs and PACs). Based on the notes I kept of my palpitations, my Holter monitor showed that I have far fewer ectopics than what I reported. Note that I also included in my notes whether I had heartburn, GERD, or had to burp each time I recorded a palp. The reason I did this is because I suspected that some of my palpitations are originating from my esophagus and not my heart. Coincidentally, I also had a ph test around that time which also required that I write symptoms I experienced such as heartburn, GERD, gas, etc. Since the test didn't record palpitations, I also wrote down when I felt a palpitation with a symptom. After reading the results, the doctor told me that every time I recorded a palpitation, the ph test said I had an episode GERD. That proved to me that all of my palpitations weren't from my heart. That knowledge and proof helps me a great deal with the anxiety I sometimes get when I feel palpitations. If I have heartburn when I go to bed I sleep propped on pillows to calm down the "palpitations," which are actually movements from my esophagus. If I lay on my side it's worse, so I'm stuck falling asleep on my back. I was on a fodmap diet for a while and my palpitations went down tremendously.
  3. I've been measuring my pulse difference between laying and standing, and the difference is 30 bpm at 2,5, and 10 minutes after standing (my blood pressure more or less stays the same). So I definitely have POTS. I'm trying to establish which type though: My blood doesn't pool in my limbs when standing during the day. In fact my veins are invisible and nurses always have trouble finding my veins to draw blood. But then after 9 pm the veins in my limbs slowly start filling up and I feel pressure in the ones in my legs, but here's the kicker - that's when most of my symptoms resolve and I feel much better and relaxed, and my tachycardia is reduced. I have no body fatigue. My limbs don't feel heavy. But I have shortness of breath and, strangely, nasal stuffiness after standing or walking too long. I'm dizzy and have brain fog and inability to focus most of the day, much of which is relieved by night time (and of course laying down). I feel shaky and have tremors all over my body. If I stand too long my knees start shaking. I'm sensitive to noise and bright light. I have severe anxiety and lack of motivation, also relieved by night time. My hands and feet sweat and are pale and clammy until night time. My limbs are pale during the day. When I've tried the recommended salt and water intake in the morning, it goes right through me. My plasma sodium is alway on the high side in blood tests. Big meals and heat don't give me symptoms. Alcohol gives me tremendous relief from a lot of my symptoms, including brain fog. The veins in my limbs start sticking out and I feel much better. Male, 49. I would much appreciate any input I can get on this, thanks.
  4. Thank you Pistol. I wish the doctor could have answered the question the same way you did. I may have gained a few hours sleep if she had. That's another thing I'm going to have to ask. I remember having to note every incident, but this time around I may be clicking several hundred times. And if I'm lucky enough to sleep that night, I'll surely miss a bunch.
  5. Yesterday
  6. Your heart will not just stop beating because of dysautonomia. If there are any issues with potentially serious arrhythmias hopefully they will show up in the heart monitor that is ordered for you. Make sure yo push the button every time you feel something irregular in your heart!
  7. My doctor prescribed marinol to try to help stabilize my autonomic system and help my appetite but it just made me really high, I hated it....I talked to the CRNP about trying CBD instead, since I can't handle being high. I've found it helps with the anxiety from my symptoms (and anxiety caused by life in general) and also helps me sleep. I didn't have much pain when I started it, but I've heard it helps pain as well. I've had zero negative side effects so far. I use the Charlotte's Web drops and took the advice of some professionals I work with who are involved in the medical cannabis system and "started slow", basically the lowest dose, and increased my doseage to what I feel works for me. I would definitely talk to your doctor about it or try to find a doctor knowledgable about it, even if you do not want to go through a state sponsored medical cannabis program.
  8. Hi all, As this is my first introduction to the community, a small bit of background (it's not all necessary reading for my ultimate concern, but I like to give all potentially relevant information): - 44 M - First started experiencing inflammatory/AI symptoms end of 2012/start of 2013. Turned out to be Sjogren's, which I'm on medication for, but still not properly diagnosed and accepted by all DRs I see (and there have been dozens over the last six years) due to still not showing up for bloodwork. - First started experiencing cardiac symptoms (tachy) with a couple of ER visits in the first half of 2017. The first was put down to dehydration after the last night of drinking for me. - Last year, I was forced to quit exercising because I was shaking/trembling after every workout, even after cutting workouts I'd been doing for years in half. Also experienced skipped heart beats after workouts or even after mowing the lawn. They were always activity/exertion based and I almost always felt a tug in my throat before they occurred, which I associated with the Sjogren's (dryness), though I was never sure how and couldn't get any doctors to confirm. - Finally convinced the cardio to do a stress test (I'd had one in the past that came back questionable, but eventually a Cardiac MRI and several other tests cleared me). Even before we started, hooked up to all the wires, she walked in the room, and told me as soon as I stood up, my heartbeat went to 130. My as needed beta-blocker became my daily medication and since then, I've had several dips and spikes in BP and heart rate with a few more ER visits, but at least the heart "rate" is stable now. - In October, I had my first real complete autonomic crash. I was sitting on there typing for work (thankfully able to work from home) and I couldn't hold my arms up any longer. Almost instantly, I was nauseous and drenched in sweat and could barely sit, let alone stand. I vomited several times that night, sure I was dying. This happened several times over the next week whenever I tried to even sit up for too long. - I've improved quite a bit in that aspect since then, though did have another crash in December. Can get up and walk around and take the dog out, do minor things, but still pretty much house bound and need to limit my standing physical activity on a daily basis or pay the consequences. The interesting thing about all this though, is once I was knocked off my feet, the ectopics immediately went away. Makes some sense because I had rarely gotten them just sitting or lying down. On and off in my journey I've had various sleep problems too. Mornings have been pretty vicious for the last five or six years, but I had mostly been getting to sleep okay lately. If I had a disturbance, it would last a couple of miserable nights, but mostly return to normal, as I've taken to meditation and stress elimination practices. However, a couple of weeks ago, I started trembling (throat and chest) while lying down, which set off the pounding heart beat. These are all common symptoms for me and basically my most concerning ones over the last year or so. This set off a several night stretch with the same event for about a week. The trembles have ceased (at least upon attempting to sleep) after that week, but what started happening about half way through (actually exactly on 6/7, so 12 days ago today) and has occurred every single night since...the skipped heart beats/ectopics are back. They now come on every single night somewhere between 8-10 pm, get worse when I lie down and last for about an hour or two after waking. They go away mostly during the day or at least lessen, but then come back now every single night. Lying down, I'll now get them around every minute through the night. If I lie down during the day, I don't get them usually. Yet, they will start every single night like clockwork and get worse when I go to bed and I absolutely can't figure this out. I'm scheduled for a holter (have done a couple in the past) at some point in the next week and have asked for another echo, but the cardiologist doesn't seem too concerned (of course not, it's not happening to her). After all that rambling, my current concerns are (yes, I've asked the doctors too, but without any answers): - Considering it's now very difficult to get blood out of me and the cardiologist suspects I have low blood volume issues now, can this be an issue of not enough blood reaching my heart? (The cardiologist says that's less likely lying down than standing up, but I'm still confused.) - If this is just another symptom of my autonomic nervous system acting out, might it simply randomly decide it doesn't want my heart to beat at all anymore? Has anyone even ever heard of that happening with this condition? - At least when they were happening in the past, I'd convinced myself I was irritating my vagus nerve. Can I be doing this lying down, through digestive issues? (I do often feel trapped gas in the chest when these come on, but which is the cause of which?) - Or is it simply just another harmless learned response by my broken nervous system that be unlearned or may just go away as quickly as it arrived? To be honest, the more of these I have, the less each individual one seems to panic me, but I have to admit the circumstances and consistence of these current events kind of has me freaked out because I can't figure them out. Thanks, Matt
  9. I was on diltiazem to control sporadic blood pressure and sporadic tachycardia during the day and a different calcium channel blocker called digoxin (very low dose to control night tachycardia). I still get palpatations during night episodes but my BP and heart are under control which is better for the valves. I did not get any side effects from either that I was aware of. My cardiologist did this as a means to not put me on beta blockers just yet due to my younger age, beta blockers effects on depression, energy and respiration.
  10. @Scout - sorry you are in the hospital. I was on several meds ( including different BB's ) and found CC ( calcium channel blockers ) extremely helpful controlling my BP. I also get very worried about potential side effects from meds but have found that we cannot find out if they help unless we try. My docs usually start with the lowest dose ( often even pediatric ) and go from there - if I do OK they increase slowly. CC are totally worth a try - be brave!!!!
  11. I'm 65 now, and when I was younger, probably starting when I was 16, I often got light-headed and my vision would turn gray when I stood up. I also started having rare episodes of fainting that were a result of pain, either from severe menstrual cramps or strong intestinal pain. When I was in my 40s my doctor told me to keep hydrated to help avoid the fainting spells. Twice I've had episodes of near fainting after airplane trips, which I figured were because I was dehydrated. During these episodes my heart races, I sweat, I'm weak, am very nauseated, just feel generally horrible. I lay down until it passes, but I'm wiped out for the rest of the day. Daily, my heart rate often increases after I eat, lasting about 10 minutes. If I'm on my feet too long (stopping to talk to a neighbor while on a walk, for example), I start feeling yucky, I feel like I'm starting to get light-headed so I bend my legs and move until it eases up. When I get home I'm done in - not from the walk, but from the standing. I often get lots of upper body pains and aches, sometimes worrying me about my heart, but my heart is fine. I am frequently fatigued. Actually, I can't remember when I last had a day of carefree energy since my early 40s. I've often wondered about POTS because so many of the symptoms sound similar to what I experience. But that can be said of other conditions as well. I have a cardiologist, but feel like if I bring up POTS it won't be given more than cursory consideration. Is any of what I describe similar to your experience? I'm going though an episode where I'm spending a lot of time in bed, dozing and reading, and sleeping. This is the fifth day of terrible fatigue. It happens to me periodically, but usually only lasts about three days. On a positive note, my dog thinks it's great and stays in bed with me.
  12. Believe me, I'll be mentioning it, it's quite painful and distracting! I don't want AS but if something helps him diagnose me, I'll take it.
  13. I'm on calcium channel blockers as well; they have no effect on my POTS but do help with chest pain/ pressure. Beta blockers made me feel more lightheaded, and almost like I was less aware of things.
  14. Wouldn’t being the hospital and monitored be a good place to start a new med? It just might help. @firewatcherit helps with daily headaches? Migraines?
  15. I've been on Verapamil for years. It has not made my POTS symptoms worse. Honestly, I can't tell that it has effected my POTS symptoms at all, but it did cut the intensity of the daily headaches.
  16. I'm in hospital at the moment after a really bad POTS episode today. The cardiologist came and saw me and wants me to start calcium channel blockers. I said I'd think about it and discuss it with my regular cardiologist. The only reason I hesitate is because beta blockers actually made me far worse, so I'm really nervous about trying a new med. I realise they're a different class of drug though, so need to consider it. Wondering what people have experienced on calcium channel blockers, especially those with hyper-POTS. Thanks so much.
  17. @RecipeForDisaster about the rib pain: I have symptoms of Ankylosing Spondylitis and my PT is convinced I have it, especially since MRI's are also suggestive of it. AS causes spine deformities and stiffness in the rib cage, in my case this causes rib pain and restricted breathing, like you mentioned. AS is also an AI syndrome - therefore the rheumo might very well be interested in the rib pain and shortness of breath, make sure to mention it!!!!
  18. My ESR and CRP are normal too. I'm going in with an open mind and will bring any recommendations back to another one of my many doctors. I kind of had a hunch he might know dysautonomia because patients with AI diseases do get it. Of course lately I have severe rib pain that is restricting my breathing both in and out... I hate having something additional going on to muddy the waters, but the rheumatologist may be interested in it. Thanks!
  19. Last week
  20. Hi ladies. I found that Plaquenil hasn’t lowered my wbc except for cases where I am flaring or have had a cold. It’s more a DMRA drug than heavy biologic. @PistolI was pleasantly surprised that my rheumatologist knew about Dysautonomia. He explained that a few patients have it because AI and dys strike the same population. He wasn’t keen on IG therapy but my neurologist shared the recent research and is very persuasive. On the SCIG my recent wbc was the highest it’s been since I got sick. Like others have said he’s open to letting me experiment with steroid dosage. I have hydrocortisone which does cause tachycardia but haven’t needed it since I started the IG.
  21. Pistol thanks , I am content with whatever is ahead. I get another ct in 3 months, then 6 months. You hang in there too!!
  22. @RecipeForDisasterI am in the same boat. I have to see a rheumo for the first time since I had a severe AI reaction from a recent double ear infection. I had general AI symptoms for years but ANA and CRP was always OK ( ESR elevated though ). I am very concerned about seeing another specialist that is "just" educated in his filed, but may not realize about all the nuances of dysautonomia. I am scared that they may not realize the degree of medication sensitivity we have - so I will ask the rheumo to check with my autonomic specialist before starting any big-gun meds. I also get very bad from infections, so I understand where you ae coming from. I - in my case - have decided to hear what they have to say and then go from there. I hope you will find the rheumatologist to be kind, experienced and knowledgeable!!!
  23. @Pre - https://ww2.mc.vanderbilt.edu/adc/38932 this is the proper and current parameter for POTS diagnosis
  24. @freewill45 - I too recently had a CT scan and they found a nodule in my pleural space ( not the usual lung nodule ). I also have to wait 6 months ( October ) until they will recheck the CT. Just be positive and hang in there!!!!
  25. I as well have been diagnose with a positive N-type antibody. I had the test done twice and came back positive both times. My Neuro did EMG checking for Lambert eaton he says they were negative .So he schedule a ct of the chest. Turns out a 6mm nodule was found in the right lower lobe of the lung. Pulmonolist wont say its cancer till he sees if it grows. So now its the waiting game.
  26. Is it a heart rate increase of more than 30 BMP after 10 minutes, by comparing the pulse you have lying down and the pulse you have after 10 min of standing, or is it the comparison between the pulse when you first stand up and and the pulse you have after 10 min of standing?
  27. Hi Jen! I found a response from you regarding POTS and an IUD and was wondering if you can tell me your final outcome of the IUD. I have hyperadrenergic pots (not even diagnosed for a full 2 years) and my periods make my symptoms unmanageable. I have a 9 year old, 3 year old and 7 month old and I need to be able to care for them. Ironically my initial symptoms of POTS started 8 weeks PP with my middle child which also coincided with the insertion of my IUD so I quickly had it removed bc the anxiety was horrible. I was doing very well for almost a year (I did have some issues with pregnancy and BP) up until about 5 days ago. This is my 3rd cycle since child birth in October and 2 out of the three have been terrible. Today I am wondering if getting an IUD and stopping the periods completely may be my answer. I got my first IUD at 28 and never had any noticeable POTS symptoms until the IUD was removed (in order to have a child). Thank you in advance for any advice.
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