morgan617 Posted June 14, 2004 Report Share Posted June 14, 2004 yesterday sort of an episode like i do a lot. bp rising, a lot of arrythmias, having to void every few minutes,etc. they usually last about an hour then i get very flushed and things settle down and then i'm just exhausted. well yesterday, my face felt like it had been shot full of novacaine , as did my arm and my leg was very weak. man it sucked. i took my pressure and it was 180/110. my pulse was above 100. i haven't had this before. i can handle all the things i'm used to, but it bugs me to get new stuff. called doc on call and he said go to er. was there from 7:30 pm till 3 am. they were actually very nice. till things came out ok. she said i had definate deficits on my left side, but my cat scan and mri didn't show a stroke, so sent me on my way. now i just wonder, is this something new i get to deal with and how am i going to know whether it's the big one or not unless it happens. i can't and don't go running to the er all the time, but it was so classic for a stroke and i'm such a candidate for one who knows. she decided i must be having an atypical migraine. i've never had a migraine in my life. man i am so tired of new crap hitting every other day. and i feel stupid for even going in. then she said my potassium was low and wrote me a script with someone else's name on it. so today i mailed it to her with an explanation of why i can't fill it. how stupid is that? anyway, not a fun night. morgan ps my face and arm did not improve till this morning. bummer Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted June 14, 2004 Report Share Posted June 14, 2004 That was a bummer of a way to spend your night Sounds kind of frightening. Probably good that you went to the ER... I know I've had many an instance where i thought "is this just my weird POTS stuff or is it something I need to worry about???" With those really unusual symptoms, it's a tough call, isn't it? Better safe than sorry I suppose though.Glad you're doing better today. Nina Quote Link to comment Share on other sites More sharing options...
VJWeaver Posted June 14, 2004 Report Share Posted June 14, 2004 I am so sorry you had to go through that. I have had those symptom a lot. I don't go to the hospital any more unless my B/P goes over 210/120 with the symptoms. I do have some numbness in my neck and arm but not like you did. Or should I say I haven't yet....LOL...I understand how you felt. I went to the ER all the time and they finally looked at me like we can't do anything for you. They see everything is out of control but like you, all test come back okay. It is VERY SCARY to experience this because you feel like you could die anytime and then you feel like a fool when your system goes back to mormal.I agree with Nina. You do need to go when you don't know for sure. I have had so many episodes that I know when it feels like before or when it is a little different. When it is different I go to the ER. Hope you don't have anymore like that and all is okay with you.Vickie Quote Link to comment Share on other sites More sharing options...
ethansmom Posted June 14, 2004 Report Share Posted June 14, 2004 I'm sorry to hear about your experience. I'm sure it was scary, but glad to hear it wasn't a stroke. It's so strange how we never know when these things are going to happen, even though we expect new symptoms to occur- but when they do, it's so terrifying. And it can be so hard to decide if its POTS or something else- probably good in ths case that you made a visit to the ER. I hope it doesn't happen ever again, and that you are feeling better! Take care! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted June 14, 2004 Report Share Posted June 14, 2004 Good you went to the ER to make sure you were ok.I think so many of us have been through this--i.e., trips to the ER. I know how awful it is and frustrating.Hope you continue to improve. Quote Link to comment Share on other sites More sharing options...
danelle Posted June 14, 2004 Report Share Posted June 14, 2004 Ya know, I have spells like that too. And there are time when I think it is "stroke-like" as well. Mine is almost always on my left side. Have had these spells for yrs and I do have weakness on that side and decreased sensation. Interesting to hear others have this too Maybe it is POTS related. Heck, I'm beginning to think everything is POTS related......... Hope you are feeling better,Danelle Quote Link to comment Share on other sites More sharing options...
RunnerGirl Posted June 15, 2004 Report Share Posted June 15, 2004 Morgan (and others who noted having similar 'episodes' high BP and other scary symptoms clustered together) - Just wanted to double check that you've been worked up to rule out pheochromocytoma and carcinoid? I know several other folks here (particularly ones with hyper beta-adrenergic featurers of POTS) have undergone these tests, as I have. Forgive me if you've posted this info before. Again, just wanted to make sure. I know pheo is rare, but it's definitely worth a 24-hour urine test check your metanepherine, normetanepherine and catecholomine levels, since you do exhibit some classic pheo-like symptoms. Carcinoid can also be tested via a 24-hour urine test of H-5IAA levels. Best wishes to you. I know how frightening these episodes can be. RunnerGirl Quote Link to comment Share on other sites More sharing options...
morgan617 Posted June 16, 2004 Author Report Share Posted June 16, 2004 yes, i've had those workups, i guess tho not when i'm having an episode, and have heard it makes a difference. however, have had mris too, so pretty sure it's not. thanks guys for your support. of note she heard a murmur and a carotid bruit, which none of my other docs have mentioned. weird huh, as i did not tell her i have mvp. morgan Quote Link to comment Share on other sites More sharing options...
Deb Posted June 16, 2004 Report Share Posted June 16, 2004 Yes, it's all weird. Just wanted to add that I've had those episodes for months, and I too went to the ER. I really thought I was having a stroke. Now I just wait them out. I get numbness in my face, a headache, a pain behind my right eye, a pain in my neck and shoulder, and weakness on my RIGHT side. I sometimes get a shooting pain in my right leg, foot, and/or big toe. And I've had them in my right arm, but not very often. I've had all those urine tests, too, but nothing has ever shown up. It has to be the POTS. It always leaves me tired. Glad you're feeling better, but sorry you have another new symptom. Quote Link to comment Share on other sites More sharing options...
justin Posted June 17, 2004 Report Share Posted June 17, 2004 wow, been such a long time since i've posted on this forum....been in hiding ...anyway...it's ironic and good that i logged in today to see this post...because all this past week i have been having exactly the same thing happen...hah. new symptoms, i mean...the first, which was a few days ago, was some kind of paralysis accompanied by slow breathing and pins and needles in my face, neck, arms and chest. it eventually went away, and then i felt really naseous for hours. this cycle has repeated itself three times since then, the most recent being last night. i don't know what to make of it, and i too am faced with the "should i do something about this or just ride it out" dilemma. once again, it's nice to know i'm not the only one..justin Quote Link to comment Share on other sites More sharing options...
hayley Posted July 2, 2004 Report Share Posted July 2, 2004 hey im new here hello everyone.i had the same problem .i was rushed to hospital because i lost the use of my right side 7 months ago .they thought i had a stroke but everything came back ok i had to have physio for a few months.everythings ok now i still have a bit of weakness and decreased sensation .i just wonder is this related to pots often i get a numb left arm aswell very strange. Quote Link to comment Share on other sites More sharing options...
Sue Posted July 4, 2004 Report Share Posted July 4, 2004 so strange to come on here to post something and someone already has. Probley for about two weeks now I have had some really strong numbness on the chin, right side of neck, chest, and arm. Not too sure what was going on. My husband really wanted me to go to the ER but I figured it was something to do with all of this. (NCS) My father had a massive stroke a few years ago and is totally paralyzed. Its scary to see what has happened to him and have all of these "classic symptoms" I am seeing my regular physician on Thursday will see what she has to say.Happy 4th everyone!!Sue Quote Link to comment Share on other sites More sharing options...
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