RichGotsPots Posted November 22, 2015 Report Share Posted November 22, 2015 (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 Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 22, 2015 Author Report Share Posted November 22, 2015 No one? Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted November 22, 2015 Report Share Posted November 22, 2015 Sorry you are feeling so poorly, i can relate What you are describing happens to me a couple times a month, sometimes with actual fevers sometimes not. Still trying to determine what it is that triggers it... Maybe weather/barometric pressure change, overdoing exercise, possibly hormone or thyroid for me really not sure. If these symptoms are persistent I usually start investigation into infectious sources as my body does not have typical response to even major infections. (Blood infections, Cdiff, sinus)Hope you figure something out soon! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted November 22, 2015 Report Share Posted November 22, 2015 Hi Rich,I'm sorry I've been delayed in responding-- reason being I'm actually going through something similar. For the last 8 weeks now I've been running episodic fevers (which is unlike me as my body temp is usually on lower end). I'm flushed and just exhausted (which is also very unlike me as I rarely am tired). The lethargic feeling is increasing, my muscles are achy and weak feeling. One of the scariest things that has happened is whatever this is, my joints (right knee) has been affected, too. I'm seeing a specialist the Monday after Thanksgiving. The last round of blood work was all normal last week, but I am going to call my doctor monday am because I feel absolutely terrible. I know exactly what you are describing, I'm sorry you can't seem to catch a break.. when do you see the mito doctor? I truly wish you success. Would you mind sharing why you are going to be seeing this doctor specifically. The foggy feeling you mention is something I've been dealing with also..the "detached" feeling in a way. Sending you my best. Hang in there. I wish I had more to offer, however at this point, I can only commiserate. I think when i call my doctor I'm going to let him know I'd like to go in for IV fluids and repeat blood work, especially as things with us can change so quickly. Something just feels not quite right. Quote Link to comment Share on other sites More sharing options...
Lovebug Posted November 22, 2015 Report Share Posted November 22, 2015 Hi RichGotsPots,When I exercise hard and push myself, I'll come home, take a bath, eat, and then get that fever feeling like my skin is on fire, I'll have no fever and when I feel my skin it is normal temperature to the touch. So I associate that feeling with pushing myself too much. I have had it at other times but just think it's hormonal. I can also feel weak at any odd time so I don't know why some days I have more energy while others I'm more weak. I like to think it is associated with my poor diet.... need to work on that.I hope you feel better and find some answers. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 23, 2015 Author Report Share Posted November 23, 2015 Hi Rich,I'm sorry I've been delayed in responding-- reason being I'm actually going through something similar. For the last 8 weeks now I've been running episodic fevers (which is unlike me as my body temp is usually on lower end). I'm flushed and just exhausted (which is also very unlike me as I rarely am tired). The lethargic feeling is increasing, my muscles are achy and weak feeling. One of the scariest things that has happened is whatever this is, my joints (right knee) has been affected, too. I'm seeing a specialist the Monday after Thanksgiving. The last round of blood work was all normal last week, but I am going to call my doctor monday am because I feel absolutely terrible. I know exactly what you are describing, I'm sorry you can't seem to catch a break.. when do you see the mito doctor? I truly wish you success. Would you mind sharing why you are going to be seeing this doctor specifically. The foggy feeling you mention is something I've been dealing with also..the "detached" feeling in a way. Sending you my best. Hang in there. I wish I had more to offer, however at this point, I can only commiserate. I think when i call my doctor I'm going to let him know I'd like to go in for IV fluids and repeat blood work, especially as things with us can change so quickly. Something just feels not quite right.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! Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted November 23, 2015 Report Share Posted November 23, 2015 Wow, what a horrible rotten night! All I can say is I'll be in prayer for you and that you make it to your appointment without incident. God bless. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 23, 2015 Author Report Share Posted November 23, 2015 Thank you! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted November 23, 2015 Report Share Posted November 23, 2015 Rich - I am seeing my doctor also this afternoon and he is able to give me IV fluids in his office so hopefully I will feel better after two liters. I'll also be having some labs done. I will let you know if anything useful comes from this. Be safe today. Did the ivabradine help with the HR increase immediately upon standing do you think? Curious to see if you've noticed a difference now that you've been off of it. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 23, 2015 Report Share Posted November 23, 2015 Rich so sorry you are having such a hard time. Let us know how you are. Quote Link to comment Share on other sites More sharing options...
Nymph Posted November 24, 2015 Report Share Posted November 24, 2015 My guess would be that you have an infection, maybe sinus, and it's making your pots worse. That happens to me. Let us know what you found out at the doctor and please take care of yourself. Glad you asked for help. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 25, 2015 Author Report Share Posted November 25, 2015 Rich - I am seeing my doctor also this afternoon and he is able to give me IV fluids in his office so hopefully I will feel better after two liters. I'll also be having some labs done. I will let you know if anything useful comes from this. Be safe today. Did the ivabradine help with the HR increase immediately upon standing do you think? Curious to see if you've noticed a difference now that you've been off of it.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. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 25, 2015 Author Report Share Posted November 25, 2015 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.. Quote Link to comment Share on other sites More sharing options...
corina Posted November 25, 2015 Report Share Posted November 25, 2015 Hope you're on the up now Rich and that the mito doc will have some answers! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 25, 2015 Report Share Posted November 25, 2015 I have been feeling "off" for the last 3 months. It started with fatigue more than normal for me, then in October I felt like I was sick. I felt achy and that malaise you get when sick, but I never had a fever. It lasted 2 weeks, and I got over that. But since then, I have been feeling weird, with a full head feeling and, as some one else mentioned, a detached feeling. I've had about 3 appointments during all this to see if someone could help me, but not one doctor could figure it out. I get moments where I can think straight, like now, so wanted to let you know it ***** to be sick and no doctor can figure it out. I am 10 years into POTS and these last 3 months have been the worst and have left me unable to do hardly anything. I don't even want to do Thanksgiving by just visiting with my grown kids. That sounds awful, but my brain is not into conversation right now.I hope this antibiotic helps! Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 2, 2015 Author Report Share Posted December 2, 2015 The antibiotics worked! ****, I went 3+ weeks completely untreated and the first week I was even in the hospital. Scary how clueless the medical community is about dysautonomia. I'm still not at baseline for fatigue but much better and on the mend. I believe there is a mito compotent to that crazy level of fatigue I got from an infection. The mito doc had to reschedule so that could be 6-8 more weeks.. Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 2, 2015 Report Share Posted December 2, 2015 Glad you're feeling better, Rich! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted December 2, 2015 Report Share Posted December 2, 2015 Great! Quote Link to comment Share on other sites More sharing options...
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