s-pot Posted November 6, 2011 Report Share Posted November 6, 2011 This is my first bad flare since I got diagnosed last March Ive been working really hard since then at managing symptoms and found this alot easier to do whilst working on wards for the past 3 mths (student Midwife..lots of movement and physical exercise!). However I've just been back at college for two weeks now (lots of sitting for 2-3hrs at a time) and POTS has flared so bad.I feel horrendous now. The downhill slide started last monday and has gone from bad to worse. Since friday i cant move from couch to bed without severe wretching/vomiting ( i dont faint this happens with sudden hypo for me). Ive bad migrane headaches all the time, joint pains, twitching and the fatigue is so bad Ive been unable to do anything but move from my bed to the couch all weekend.BP hasnt been above 80-90/50-60 despite me drinking plenty of water with salt added. Lots of arrythmias but surprisingly today when i took my pulse (was considering taking an extra dose of Midodrine to bring up BP) my HR is only 56. I am absolutely frozen with the cold despite hot water bottles, blankets n extra layers too.Overall im feeling really miserable and not sure what to do as ive not experienced this so bad since i got diagnosed and was in hospital. Am wondering should i be trying to get some IV fluids at this stage to help with BP?? Also, despite being alot less active since i have been back in college the last two weeks, the weight is dropping off again ive lost at least half a stone in the last two weeks! Im thinking my body is working overtime trying to balance BP and HR with all the sitting-standing im doing??I'd really appreciate it if anyone could give me some advice on what ye would do in this situation. It's so so rotten!!! Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 6, 2011 Report Share Posted November 6, 2011 s-pot,Sorry for the relapse. It sounds like you're doing the basics. Are you wearing compression stockings to class? Also, maybe your meds need to be adjusted for the change in your activity??Hope you feel better soon,Katie Quote Link to comment Share on other sites More sharing options...
janiedelite Posted November 6, 2011 Report Share Posted November 6, 2011 I agree with Katybug. Definitely let your doctor know. Perhaps the IV would be a good idea, and maybe some midodrine since your BP is so low? Quote Link to comment Share on other sites More sharing options...
s-pot Posted November 6, 2011 Author Report Share Posted November 6, 2011 Thanks so much for responses you guys Much appreciated!Em Ive been waiting to see my consultant for ages now...had to cancel my last appointment due to weather issues here in Ireland, cudnt make the journey. I think i defo need an assessment of meds at this stage and referral onto someone more specialist...whoever that may be over here :/I was going to take another dose of Midodrine earlier for the low BP but when i discovered my HR was so low ( v unusual for me) I was nervous, usually the midodrine pushes my heart rate down. It cud end up making me feel alot worse???I get the sense IV fluids is prob the only thing that will give me a lift now . Im drinking fluids but its running straight through me...think im hypovolaemic and bodies not holding onto the fluids i am drinking. However I dread the thought of having to go into A&E with this......havent hadto do it since diagnosis and no one knows ANYTHING about POTS here! Dont think id have the energy to explain and possibly fight them to take me seriously!!!! Quote Link to comment Share on other sites More sharing options...
s-pot Posted November 6, 2011 Author Report Share Posted November 6, 2011 s-pot,Sorry for the relapse. It sounds like you're doing the basics. Are you wearing compression stockings to class? Thanks Katybug...hadnt considered doing this!! Cud really help with the long hours sitting!! ive only 6weeks left to complete the theory part of my degree...no more sitting in lectures after that!! So ANYTHING to get me thru the next 6 wks ill try!!!Thanks Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted November 6, 2011 Report Share Posted November 6, 2011 You sound pretty sick I think it would be worth going in for some IV fluids. Is it possible that you have caught a bug? Any fever or other symptoms? I'm newish to this but my biggest flare was when I was sick with a virus. What is your highest heart rate?Usually the HR goes faster to compensate for low BP so the low HR could mean your body just can't keep up...I think you should be somewhere that they can monitor you while they try to make you better, but YES IT ***** that ERs etc know so little about POTS.Hang in there and definitely slap on those compression socks! Quote Link to comment Share on other sites More sharing options...
s-pot Posted November 6, 2011 Author Report Share Posted November 6, 2011 Thanks Anaphylaxing!!Tbh I am quite sick now I usually am very positive and upbeat and do everything i can to manage this but its really bad ryt now!!Dont feel like i have any infection or anything going on....Migraines are severe now, my HR usually is 70-80 resting and can increase up to bout 130-140 then with standing depending on how I am or what im doing during the day.But never low 58bpm earlier....my body feels like it is struggling terribly at the mo. Ive checked BP several times today and its never more than bout 95/58,(took an extra dose of midodrine this afternoon aswell). HR is fluctuating throughout the day from brady to tachy :/. Havent managed to get off the couch all day, mustering up the energy to even get some food has been really tough, althou my appetite is pretty bad now too.Think im gonna havto hit the ER later or in the morning Extremely fed up now!!! Thanks for the support u guys!! Im all on my lonesome up here where i go to college...no family around and as its the weekend all my college mates are gone home too. So its great to be able to get some support herexxxx Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 6, 2011 Report Share Posted November 6, 2011 s-pot,I was also thinking (because I do a lot of vomiting too because of POTS) that someone on here mentioned drinking a cup of boullion every day. That will get you a large salt load and fluids at the same time and maybe your tummy can take it since its liquid?? Worth a try (but I would make sure you get boullion that has no MSG in it.)Good luck,Katie Quote Link to comment Share on other sites More sharing options...
s-pot Posted November 6, 2011 Author Report Share Posted November 6, 2011 s-pot,I was also thinking (because I do a lot of vomiting too because of POTS) that someone on here mentioned drinking a cup of boullion every day. That will get you a large salt load and fluids at the same time and maybe your tummy can take it since its liquid?? Worth a try (but I would make sure you get boullion that has no MSG in it.)Good luck,KatieFunny you mention that Katy cos in my desperation today to feel a bit better and get a bit of food into me I managed to make a pot of veggie soup and put in lotsa salt, boullion and extra stock! i dont usually use it but was trying to find anyway to get the extra salt into me!Ill remember that tip for the future thou. Thanks Cant imagine drinking the boullion would taste too good! Quote Link to comment Share on other sites More sharing options...
Lette Posted November 6, 2011 Report Share Posted November 6, 2011 Hey s pot, im in ireland too and im having a relapse too, Im vometing every night now and back to napping during the day when I didnt need to for a long time!! I am back to the specialist in 2 weeks so hopefully we will see whats up, im still on the same meds and in my description below, I can have good and bad days but the vometing is killing me and back to fainting too where that had stopped for a few months Quote Link to comment Share on other sites More sharing options...
s-pot Posted November 6, 2011 Author Report Share Posted November 6, 2011 Heya Lette Its Steph sorry to hear ur having a rough time too!! Thought i was on the up big time n not heading bak to feeling like this again!! Its rotten.I see your on a good bit of medication now aswell.....its tough to get the balance wit them. Im hoping to get mine reviewed again nd get a better mix for what i need. Actually since i posted this earlier my mum has managed to get it sorted that i can get admitted under my consultant in ros tomoro morning. Hopefully some IV fluids at least will help me get bak on my feet a bit n go from there. Hope ur consultant helps you get bak online again Lette.Just wish there was a specialist/expert over here in some of this...its tough to find pple who have even heard of it never mind kno how to help !! Quote Link to comment Share on other sites More sharing options...
Lette Posted November 6, 2011 Report Share Posted November 6, 2011 yeah Ireland is very behind the times in the health department :( I am also on a 2 year waiting list to find out if I have Vascular EDS!!! I am really hoping my appointment in 2 weeks can speed things up a bit! Hope you feel better soon Quote Link to comment Share on other sites More sharing options...
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