MightyMouse Posted January 31, 2008 Report Share Posted January 31, 2008 After more than a week of feeling really awful, I got into an emergency appointment with my ep cardiologist today. Symptom-wise, I'm back at where I was pre-diagnosis and pre-medication regimen. I'm having wild swings in HR and BP and I feel so incredibly exhausted, dizzy, nauseous, loss of concentration, floaty headed. I've had to leave work early or call out a few times--which I rarely do. If I hadn't gotten the appointment, I would have just gone to the ER b/c I knew something was really wrong.at my visit w/ my doc, we did the poorman's TTT...and my bp did what it did WITHOUT any meds--it dropped out and he couldn't pick it up--finally got a 60 manually. So, now it's time for a medication shake up. Nix the Cozaar, get back on Florinef, and possibly midodrine again. I'm glad we have a plan, but a bit anxious about going on florinef again because the last time wasn't good. So, that's my news from the depths--just got home from the pharmacy and I need to sleep.-Nina Quote Link to comment Share on other sites More sharing options...
mkoven Posted January 31, 2008 Report Share Posted January 31, 2008 Hi Nina,Sorry to hear about the pots flare. It s..ks. Hopefully it will disappear fast. After two months of feeling awful, I'd started doing better again...till today with my period. I hope you can stabilize soon.Michele Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 31, 2008 Report Share Posted January 31, 2008 Nina,I'm sorry to hear you are crashing. I hope that you and your doctors can find another med concoction that helps, and I hope you can find your way out of the POTS hole soon. Please keep us updated with your progress.Rest well.Rachel Quote Link to comment Share on other sites More sharing options...
morgan617 Posted February 1, 2008 Report Share Posted February 1, 2008 Sorry, Nina, hope it gets better soon. Did you ever get any info on the heart rate thing???? morgan Quote Link to comment Share on other sites More sharing options...
bellaluna Posted February 1, 2008 Report Share Posted February 1, 2008 I'm sorry to hear you're having a rough go... the thing that is so frustrating about things like POTS is that you never know if you are really fully better. It can come out of the blue and make you miserable at any time.Hopefully your new meds will help get you back to feeling better very soon. Sending hugs your way in the meantime! Mary Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted February 1, 2008 Author Report Share Posted February 1, 2008 Morgan, it's the loss of BP--I must have been cycling in and out of low bp for a few months now, and it's just all hit a crescendo this past week of nonstop tachy and exhaustion.btw, my trip tonight to the pharmacy didn't result in my leaving with florinef in hand...of course no one but me needs to RAISE their blood pressure in this town! They special ordered it and hope to have it for me tomorrow.Nina Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted February 1, 2008 Report Share Posted February 1, 2008 I am so sorry that you are having this relapse! It sounds like you are really out of balance. I wonder if you were exposed to a virus. When we are doing fine we forget that it only takes one strong stressor/allergy/cold and we can loose all our footing. It is very frustrating to have to reinvent a treatment plan after we seem to be managing. I feel deeply for your current situation. We all understand well that sense of loss of control over our body. You may never know what is was that triggered this but take it from a fellow bottom dweller, we seem to eventually rise up once again.As an well seasoned /older pots person, I find the relapses are getting longer with more global body issues happening at the same time. Do you find this too Nina? We will have to keep tabs on that as we age. Grab some comfy stuff to help make your stay in the pots hole more pleasant. I hope you can rest up over the weekend and maybe by next week this time you will have found a way out.take care,tearose Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted February 1, 2008 Report Share Posted February 1, 2008 So sorry, Nina... it really hits you hard when you feel like you are holding your own and crash. I hope you find a way to dig out! In the meantime, cuddle Wilbur and let him purr on you to rev up your motor! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 1, 2008 Report Share Posted February 1, 2008 Hope you get back to your baseline soon. Whenever this happens to me I feel pretty scared and worried--so I think I know what you are going through. What helps me mentally is to remind myself that crashes are a part of POTS. Sending you healing wishes, Katherine Quote Link to comment Share on other sites More sharing options...
pat57 Posted February 1, 2008 Report Share Posted February 1, 2008 Getting a goods nights rest is essential- for me- so its the first time that comes to my mind. Are you sleeping well?Hope you feel better soon! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted February 1, 2008 Author Report Share Posted February 1, 2008 I'm sleeping a ton, thanks, though. I've had to come home and sleep instead of lunch...and then sleep when I get home, and sleep through the whole night.Today has been rough. I left without my support hose on--and came home for lunch to get them b/c I feel like if they're on, I might be able to get through the last half of the workday. Thanks for all the kind words--it helps me keep pushing on.Nina Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted February 1, 2008 Report Share Posted February 1, 2008 (((Nina))))Sorry that you're feeling bad! I hope the medication shake-up helps!POTSy bodies are so darn touchy!Amy Quote Link to comment Share on other sites More sharing options...
runningshoe Posted February 1, 2008 Report Share Posted February 1, 2008 This crash will pass, wait it out and see. If you got on top of your symptoms once then you can do it again! Quote Link to comment Share on other sites More sharing options...
dawn Posted February 2, 2008 Report Share Posted February 2, 2008 Nina,Sounds familiar. My doctor finally said "enough.""You need all the energy that you have to be able to care for yourself."I hope this is temporary. I used to go on Florinef but it didn't do much except deplete my urinary sodium.Take care of yourself, it is really important.Dawn Quote Link to comment Share on other sites More sharing options...
flop Posted February 2, 2008 Report Share Posted February 2, 2008 Hi Nina,I hope you're feeling better soon.Take care,Flop Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted February 2, 2008 Report Share Posted February 2, 2008 Helllllooooo down there Nina! Hope you are feeling a tad bit better each day.Need anything down there?What are you doing while you are down there? Anything to keep the brain cells moving?Sending you warm healing thoughts.best regards,tearose Quote Link to comment Share on other sites More sharing options...
mom4cem Posted February 2, 2008 Report Share Posted February 2, 2008 Sorry to hear your not feeling well. Glad you got in and checked out right away though and hopefully you can prevent feeling any worse and will be back up and around soon.Hugs. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted February 3, 2008 Author Report Share Posted February 3, 2008 Hi Again all,thanks for checking on me down here; I'm hanging in there, but the marathons of high/low bp and hr have taken their toll on me--I was pretty much completely out of commission yesterday. I slept until about 10 am, then fell asleep again before noon and woke up at 3pm. Slept the whole night again and woke up about 9am--could go to sleep again now (about 11:30), but I'm trying to keep some sort of a schedule so that I can wake for work tomorrow.I've had 2 doses of florinef so far. I'm a bit bloated and haven't yet checked my bp/hr standing, but will so so today b/c the doctor wants me to email him with my vitals tomorrow.I could really use a full body massage about now--I forgot how much it makes my muscles sore when my body runs like this. Everything aches. Otherwise, I'm hanging in there as best I can. Wilbur has kept me company and given me a few laughs. He cleaned my head today for about an hour, so I don't think I need a shampoo I'm purrrrfectly coiffed.Nina Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted February 4, 2008 Report Share Posted February 4, 2008 aw boy that Bit*s!! I hope that you can get something to help you get out of the pots hole miss mouse!...bright side.. atleast there is lots of love being sent you down there... feel better!lots of hugsdizz Quote Link to comment Share on other sites More sharing options...
Megan Posted February 5, 2008 Report Share Posted February 5, 2008 Hang in there! You're in my thoughts.Meg Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted February 5, 2008 Report Share Posted February 5, 2008 Goodness, Nina- I just saw this tonight- I'm so sorry! This royally stinks. I'm sending good thoughts your way- and yay, for Wilbur for helping take care of his mommy! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted February 5, 2008 Author Report Share Posted February 5, 2008 I just wish that Wilbur could now take away this headache ... or the 3 lbs of bloat I already have from the florinef. Wrote my cardio the email he requested with my vitals and asked about dropping to half a dose because I feel pretty crummy. Cranky, edgy.Thanks again for the nice posts... wish I had a nicer update. Maybe tomorrow? Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted February 5, 2008 Author Report Share Posted February 5, 2008 Er, well, so much for the positive thinking getting me to a better day....not quite there yet. Didn't get much sleep but needed to work a full, full day today. I really just wanted to hover in my hole for cover but kindergarteners with autism were all bright eyed, bushy tailed and charged more full than the Energizer Bunny this a.m. No rest for the weary. I'm still at work and am trying to rest a little before endeavoring to get in my car and drive.my bp has been soaring--lying down this am it was 146/108, and standing was 170/108. Ugh. My cardio did email me back though, and we're cutting my florinef dose in half. I skipped it altogether this am. Trying again for a better day tomorrow... here's to wishes coming true!!!!Nina Quote Link to comment Share on other sites More sharing options...
Tammy Posted February 5, 2008 Report Share Posted February 5, 2008 Wow, your BP is really high... that's a little scary! Hope it levels out soon...Take care,Tammy Quote Link to comment Share on other sites More sharing options...
mkoven Posted February 6, 2008 Report Share Posted February 6, 2008 Hi Nina,The new ans doc I saw prescribed clonidine prn for bp spikes-- knowing that I don't need to regularly have my bp lowered. I've been told to take it if my bp goes to 170/90 or higher for more than 5 minutes. I haven't needed it, but thought that was interesting...Don't know if that would be appropriate in your case. Hope you feel better soon.Michele Quote Link to comment Share on other sites More sharing options...
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