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RichGotsPots

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Everything posted by RichGotsPots

  1. Last night I slept 14 hours and I woke up without the feverishness and pounding heart for the first time in 3 weeks. My back feels like its been sun burned from the inside which is my sensory neuropathy. I still feel weak but hopefully im moving in the righr direction now. Oh, and the doctor gave me 5 days of antibiotics. He has no idea what it is but for insurance purposes he called it an upper respiratory infection. He was so freaked out by my heart tests in his office that he wanted to give me a beta blocker. So I told him I would try coreg. He gave me 3.125mg pills, anyone know if that is a lot? I will do some searches on here because I have heard some good things since it is an alpha blocker too. Havent started it yet, want to wait until I finish the antibiotics..
  2. Hey Sarah, hope you are getting better soon. IV saline doesn't usually help me all too much, but in the hospital that first week I think I think a very slow drip over night helped a tiny bit. I asked them for IV Dextrose, which is used for mito disease but they didn't give me it. I see a mito doc in 6 weeks. That Invabradine didn't lower my HR at all on 7.5mg/day but really 10mg is when its suppose to start helping, some people take 15mg. So being off it really didn't notice a difference. I think it did staballize my BP a tiny bit more than usual though. I really want to try it again soon.
  3. It's really hard to tell what that was. If we didn't know you had POTS, I would lean toward a panic attack from al, that stress. It could also be a bug since you were throwing up, my POTS was in remission or control for 4 years after it first started. It also came back after my divorce and after I moved to a new apartment, in my case I think it was do to either fireplace in the apartment or something else around there like the fumes by the parking lot where I commuted. Some potsies have multiple chemical sensitivity. But to me again, hos you are describing the situation where they are happing, they are scary type of scenarios. Did you take your HR and BP at the times? If they arent up and down based on posture then I think it was panic. Either way you may want to talk to a doc about taking a benzo to calm you down..
  4. There is no known association that I have ever read and I read up on autonomic breathing problems a lot. A pulseOX was actually how I figured out I had POTS. My POTS started with bad breathing problems and my HR being really high in hospital. So when I left the hospital I bought a pulse ox and recorded my O2, HR and breathing strangth with a meter. Every hour I would record all 3. When I woke up I noticed my HR was lower when laying in bed. googled and bing. My pulse Ox is accurate compared to the hospital ones they even wrap around your finger. But if my hands are cold my O2 stats will be low. Otherwise they are always 99-98 range.Dysautonomia people have a problem with CO2 that can actually raise O2. Artery Blood Gas is the most accurate. But the most accurate way to take Blood Gas for a dysautonomia patient is during a cardioPulmonary exercise test. Pretty much like a cardiac stress test. You walk on a treadmill hooked up to ekg wires but they do the blood gas before you walk, then they make u wear a special mask that records your end tidal O2 and CO2, then after then immediatley after you cant walk anymore they take the glood gas again. That sees what happens at rest vs. upright and active. A lot can be seen from doing it like that not just oxygen. Meanwhile anecdotally, over the years I have spoken to maybe 10 people that have dysautonomia and low O2, but it was usually do to other underlying conditions. One had Pulmonary Hypertension, another had COPD, another lung scarring just to name a few. I also know a bunch with sleep apnea both obstructive and central. Usually they say a CPAP helps their daytime breathing and O2 levels. Again this is anecodatal info. The many lectures and studies I have read and listened to say there isnt any more prevelance then general population as far as Apnea, POTS people have a special type of restless sleep (but that doesnt affect O2).
  5. I'm not sure you can have kidney problems due to low BP. Do you mean who has kidney problems that cause low BP? When I first got dx, i went to a nephrologist to have my kidneys checked and they kind sn ultrasound and blood work and he said it was normal. He aso offered to treat my ortho hypotension. So I learned neaphrologists are very familiar with low BP and low BP meds.
  6. This is truely unbearable. If you run a search on the forum for pneumonia you will find my 2 posts about when I had it. That lasted 4 days before I started antibiotics. This time its 3 weeks. They didn't do anything for me in the hospital the first week and it hasn't improved. I get so week that my breathing problems are triggered now just to walk to the bathroom. Before this I was going out driving 5 minutes and walking a little in a store without problems. I was laying down tonight and my HR was 65 and I was thinking that it's improving. Then I go to brush my teeth and then try to go to sleep and I was so weak. I turned over on my left side and my heart was pounding faster and faster until it was 140. Then I was so weak i got the surges of adrenaline, like my body was trying to wake me u and give me some energy. So I had to wait 20 minutes until my BP went down from 160/100 and the tremors stopped. Now it's 10am and I still havent been to sleep. I have a doctor appt at 3pm, but I wont be able to walm to the car. It's gojng to be soooo hard to get there. Trying to get someone to help me. Im trying to avoid the hospital again if I can. Thank you for your well wishes. Hang in there too!
  7. Sounds similiar what im dealing with the past 3 weaks. My weakness has hit like a mack truck, i feel feverish with no fever but ice packs help, tylenol seems to help. Blood was normal except high basophil white blood cells. Mine just isnt passing
  8. Unfortunately the only way to confirm Hyperpots is the blood during the ttt. If I had to take an educated guess I would say they used an Impedence monitor called a Bio-z (something like this name not sure if its that actually). Basically it measures blood flow and volume the way an impedance scale does (complicated to go into). It's new/older, new because those impedance scales have only been around for a decade or so and old because they kind of fell out of favor quickly. Supposedly they aren't that accurate. Cleveland Clinic has been using a special nuclear scan they invented for the same purpose, but they are the omly one that uses it. I thought about buying a good impedence scalethat measure hydration, but passed because reviews were mixed. Sound like they are taking the impedence monitor more serious and thus are perfecting its use and comparison, which sounds promising. I had Bio-z done a long time ago. The finger thing is actually cool, its a beat to beat BP monitor, that's what every TTT should have, usually centers only have them though. So basically your treatment is hard for me to understand. If you have pooling usually that goes along with a BP drop. You can have both hypotension and hyperpots which I have. But the problem with treating that is the lability of our BP. You give me a Beta Blocker and my BP drops big time. You give me salt or a steroid like florinef that retains salt my BP spikes. Some people do use a BP raising med and a BP lowering at the same time to sandwich in our BP at the same time. The tricky part is getting both meds to work at exactlynthe same time. If one pushes hard then the BP goes in that direction. If you can tolerate Midodrine it's more immediate results for timing purposes. But a true hyperpotsie without ortho hypotension, would never handle florinef, midodrine, mestinon, licorice, ect.. Usually they start with an alpha+beta blocker and clonidine. Clonidine is what they use to reduce adrenaline in pheo tumors..
  9. Some antibiotic over use is associated with neuropathy and that may include autonomic neuropathy. Maybe Mention this to your doctor. As many as 50% of POTS and other dysautonomia people already have noticable autonomic neuropathy via QSART or skin biopsy. Just wanted you to be informed. Hope you kick it soon.
  10. (3 weeks now) and Last night and today has been very rough. Last night I walked to get the sheet from the dryer and put it on the bed. And that caused me to have bad breathing problems and extreme weakness (my normal pots breathing problems usually take more excertion then this to cause breathing issues) I slept 6.5-7 hours last night, when I woke up I was really warm, like feverish but my temp is 96.8. My skin feels fine but my body felt feverishly warm all day, especially my back, stomach and chest. I woke to 140 beats/min heart rate, which is really high for me laying down and just waking up to. I am usually 85-95, sometimes 105. But my heart was pounding. It was like I had a high fever. I was really dehydrated and drank a lot and my heart rate slowly came down over an hour to 105. But the rest of day I have felt extremely weak and feverish still. my HR laying now is around 110-115 and rising and I feel foggier than normal with some head pressure. I was in the hospital (for 4 nights) 2.5 weeks ago when it started. My primary wont see me until Tuesday, i dont know if I should go back to hospital because its so crazy there and they dont help you.. Any ideas are welcome. I don't think this is from Dysautonmia because I have had it so long without this. The only time I was this bad was when I had pneumonia 3.5 years ago (i posted about it on here). Thank you
  11. No bumps but that is great news that you are doing so well! How did they figure out it was your gallbladder? I kmow a lot of potsies who had it removed but didnt help them...
  12. Where did u have it done? How long was it done for in all positions? How and when did they take blood to measure your catecholamines? What did they use to measure your perfusion in different regions of your body? Did they tell what they used to measure stroke volume? This will help me answer your questions. Also it is strange to give a hyper POTSy patient a medicine like florinef that increases blood volume which will increase BP. I am hyper POTS but the pooling causes my BP to eventually crash after standing over 5 min or walking 2 min which means I also have delayed OH.
  13. Blood gas can show metabolic acidosis or alkoidosis. This is not linked specifically to POTS but it could linked to illnesses that cause dysautonomia, it's not only breathing related. And yes autonomic system controls breathing and up to 30% with dysautonmia have breathing problems but only less then 5% have bad problems from it. And maybe 1% would say it's one of their worst symptoms. There are many posts I have polled about it on here. Also there are studies that show pots people a type of hyperventialtion (not like rapid type you normally think of)
  14. There are some with pots and vocal cord dysfunction that can be like that
  15. Thank you. I never have experienced anything like this so idk why now. Could be that I stopped IVIG too long and I am crashing. Could be Mito crash. Could be a reaction to Ivabradine. Could a virus. It's lasted a long time already though without any clues..
  16. I stopped IvIG to see how ivabradine would work on its own and maybe help with ivig after it started working. I had worked up to 7.5mg once a day (for 4 straight days). It still didnt lower my HR even a little bit, but I had no side effect. The doc/nurse wanted me to work my way up to 7.5mg 2x/day. The on the 5th day I messed up my sleep and didn't take my dose. I had extreme weakness, but when I started my dose again it didn't help. So i have no idea if that was the reason for the weakness, but I ended up in the hospital for a few day and they told me I could stop ivabradine just in case, that there isnt withdrawl. So I stopped it but that didn't help even after 9 days off it.. I see the cardiologist tomorrow
  17. It's been awhile since I posted about my condition. As many of you already know, I have had dysautonomia for 9 years already, it was in a 4 year remission the first 4 years. So I have had bad dysautonomia for going on 5 years with little to no relief from any meds or treatments. Having been this disabled and sick for so long it became my new "normal." Always having tachycardia my body is relatively used to it to a degree even though it can be very limiting. My Tachy usually doesn't make me anxious and I can deal with a higher HR then most people. Since I have IST on top of POTS my resting around 100-110, my standing around 140-145. This is when I am not in a flare. I consider myself to have chronic fatigue from the high HR. I also have Sjogren's Syndrome which led me and my doctors to believe that I have Pandysautonomia which is dysautonomia caused by an autoimmune illness. So I started getting IVIG for it a few months back. I only eneded up with 2 months of infusions because on the 3rd day i would get bad chest pressure (its very thick, sticky stuff). I also got superficial clots (docs said they are not dangerous like deep vein clots) where the IV was in both arms after the 2nd months. Doc ordered for me to switch to only 2 days a week instead of four days in a row, but around that time I started taking ivabradine so I waited to restart my infusions. Which brings me to the purpose of my post. I started Ivabradine around 2 months ago. I started it extremely low dose at 2.5mg once a day and slowly worked up to 7.5mg/day. Then I saw the cardiologist nurse and she told me to raise it to 10 and then 15mg/day. At that point I had no side effects, but also my HR wasn't lowering at all. At that visit they were supposed to give me more sample bottles but they didn't have any so I waited to increase my dose. A few days later I did a really dumb thing by not going to sleep until 8pm the next day. So I was up for 36 hours straight. My normal routine is to stay up about 19 hours then sleep 7-8 hours. Sometimes I try to stay up longer and longer to get back to waking up in the morning, but I do this gradually over 3-7 days 1-3 hours at a time. So 36 hours was extreme. But I went to sleep exhausted at 8pm and I woke up 4am so I got some really good sleep. The next day I woke up feeling okay but miday I ate a heavy lunch and went to go sit outside a little around 1pm. After 5-10 min of sitting out I started to get profoundly weak and tired. I just figured I needed more sleep, so I went to go lay down and maybe push myself to at least stay up until 8pm so I wouldnt loose this schedule. I was just so tired but stayed up and at 7pm is when everything started to go bad. I was sitting up in bed watching TV when all of a sudden I lost all energy. I got the wind knocked out of me and was so weak I couldnt eat and to sit up was so impossible. I never felt this profound type weakness in my life (only very weak after I exert my energy in some way and not to this degree). It was strange as ****, and then 10 min later my adrenergic system kicked in and my HR and BP went sky high. I couldnt go to sleep until 6am after that. After two days of not recovering and my laying HR still being around 130's, I went to the ER. They admitted me to the hospital. I was in the hospital for 4 nights. It was a terrible experience at the hospital and they didn't have a clue. They ran a lot of blood work and gave me IV saline the first night. After the second night I got a little energy back but I woke up with chest pain and a high HR. It was near impossible to get sleep there. The cardiologist had no clue but said my chest pain could be chondritis. They were only giving me tylenol (i cant take asprin). i was still weak but the 5th day I wanted to get out of the hospital badly and checked myself out with the ok from my cardiologist. I got home and again the profound weakness started. I was thinking it was viral so I started taking elderberry and olive leaf and it helped me a little not to get worse. A few of days ago I started taking d-ribose thinking it was mito related. D-ribose seemed be helping slightly and yesterday I was able to get out of bed and do a few things. I have been going to bed at around 5am since I have been home and sleeping 7 hours. But last night I tried to go to sleep 3:30am and couldn't, i had palps and weakness, so I waited until 9am. I woke 2:30pm with chest pain and checked my HR it was 147. I couldn't sit up from the chest pain. I waited it out and hydrated and it calmed down to 105 after an hour. I have a cardiologist appt tomorrow. Oh and I stopped taking ivabradine in the hospital over a week ago incase that was the cause. Only time I was nearly as weak was when I had pneumonia 3+ years ago. But I dont have a fever this time or more breathing problems. In the Hospital they did a chest x-ray, ECG, and echocardiogram. X-ray and echo were normal but one ekg said Sinus Tachycardia (113 beats), nonspecific ST and T wave abnormalities: Abnormal when compared to previous ECG take 2 days prior, ST now depressed in Lateral Leads. Called the cardio and she said it was from tachy. My bloodwork finally came back after I was home. Normal except my ebv titers were positive (only showing previous infections not new infection and 90% of the developed workd has that I read), 1 out 3 times my CO2 (via vein not artery) was a little low (23.3 vs. 24 is low). 1 out of 3 times my anion gap was high (16 vs 15 is high), Alk phos was low (44 vs 45 is low), 1 out of 2 HGB was high (16.9 vs. 16.7 is high) and my absolute bosophils were high (.150 vs .05 is high). Magnesium, calcium, phospherous, sodium, ect.. Were all normal. Same with d-dimer and other heart blood work Meanwhile I'm not feeling ok at all and this is more then 2 weeks without hardly any let up. I have an appointment with a mitochondrial specialist at the end of December, but he is far and I have to find a ride there. Wish I could get some answers
  18. It is dissappointing that it is taking so long for this research to become public and be published. Also if it's true that only Alpha 1 and Beta 1s were tested then that is terrible. The reason I'm saying that is because of the cost and the amount of samples that went into this study. There are tons more of autonomic receptor antibodies that need to be tested in order to treat a patient in a balanced way. The only win here is finally pointing to a big autoimmune link but that has been brewing for ages and as Rama noted it was pretty obvious. Also what is interesting is that sometimes amount of antibodies does not relate to how bad autoimmune symptoms are but here they are saying amount related to HR... Wish they would give a timetable on when they plan of publishing the entire study..
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