dizzygirl Posted November 30, 2005 Report Share Posted November 30, 2005 Hi folks...I am more or less posting to vent today!!..I am having some real BP and HR issues today.. and yesterday too......nothing new right?Saturday i strted getting a mjor Migraine.. and let me tell you it is kicking my butt!!.. and the weirdest thing happened also.. Not something that I have ever dealt with before.. I got a major dizzyspell while laying down (thats not unusual..) but I sat up b/c I felt like I couldnt breath.. and the instant that i sat up.. I got a nose bleed! I have never ever had nose bleeds before....I knew that once I woke up saturday evening and saw 2 scarecrows instead of one.. (LOL ) sitting on the TV that i was in for a rollercoaster of a night or time I should say...and I had another nosebleed this afternoon! i have never had nosebleeds ever.. its ticks me as odd.. maybe the air is too dry here or something I dont know..well..I just havent been feeling well and have spent alot of time laying down.. i try to force myself to get up and move.. and my body is SOOOOO heavy and dead weight feeling...But getting to my point.. my potsy is just raging through me.. and it is starting to p@&% me off!! I am having bad autonomic storm/surges.. I try to sleep at night.. and am sleeping like 20 minutes and I wake up sweating and shaking profusely.. and I am so faint and messed up feeling.. and sick feeling (meaning nausea.. tummy aches.. the works..) i just am so frsutrated! my tummy was starting to feel alittle better. in regards to apin.. and being able to hold food down and such.. and now its worse then it was a few weeks back!!Insomnia is abck full force too...i was sleeping atleast a few hours a t nioght.. then really crashing during the day.. now i cant even sleep during the day!! and I am so freakin' tired that i cant stand it... my pain level is through the roof.. my legs hurt so badly that i cant stand.. my feet are swelling to the point that even putting sock and slippers on is "tight".. well i've been watching my BP and what not.. the past few days..as I have been so syncope-y- feeling taht I cant bare to stand... and am SO DIZZY!! and floaties galor....well at the docs today.. (what ajoke!) my Bp was low and I felt like i was going to hit the floor.. I havent been able to hold my head up straight or sit up straight for days now.. from a combo of the pain from my migraine and the potsy feeling in my head.. my head feels really heavy and weak.. UGH I checked my BP here at home and its reached an all time low.. of 45/23 w/a pulse of 46.. you can abrley feel a pulse in my wrist... then it went from 46 to 120 just like that..a hard slow pounding.. go figure!! i realize that in my case that 120 heart rate is mild compared to what it usually is.. but jumping lik that from 46 to 120 just like that.. is enough to make you want to puke.. UGH! I have been drinking the gatorade and eating the salty ham and stuff for 2 days.. I am SOOOOO thirsty.. i cant get enough to drink... the other night I drank allmost a gallon of gatordae.. I usually keep 2 bottles by the bed.. I was having such bad autonomic spells.. that I had to venture down stairs in the middle of the night for liquids.. something i dont do b/c I am so unsteady on my feet at night..sorry folks I dont mean to sound depressing.. but I am just like so tired of this pots.. and not feling well..I satat the docs today for over an hour.. (seeing the fill in doc.. as my doc wasnt in..I waitied like a hour to be seen.. and she said you need pain management.. I'm like I know.. I was having such a hard time sitting there.. I'm like if you could find the roof casue of my pain.. then maybe it could be treated properly!...i ddint mean to snap at her...but i'm so sick of everything!! I have multiple pain meds to take.. and none of them help... vicodin does take the edge off some butt makes me feel really wacked out.. and messes up my GI track even more then it allready is..Ok.. one good thing came out of my dr. visit..today.. ig o see a nuerologist friday who treats migraines!!! through a migraine clinic.. so that s a plus.. but they couldnt give me anyhting heavier for the pain b/c my BP isall over the map and so low then high.. which i understand...I guess I am feeling kinda depressed tonight...and just needed to get this of my chest...thanks guys it you read this all the way through.. and sorry its so long!!averydizzydizzygirl Quote Link to comment Share on other sites More sharing options...
mom4cem Posted November 30, 2005 Report Share Posted November 30, 2005 Sorry you are feeling so poorly. The nosebleeds could be from anything, from sinus/allergies, (with dizziness)(I get those), or possibly the migraine,just too much for your body to handle.I hope you get some help with those migraines, it's so tough with meds for us, who knows how we will react.I hope you feel better soon, and keep with the fluids Quote Link to comment Share on other sites More sharing options...
Guest Belinda Posted November 30, 2005 Report Share Posted November 30, 2005 Dizzzy-I really hope you start to feel a little better. This bouncing between Docs. and meds is @##$$%.Hang in there...Belinda Quote Link to comment Share on other sites More sharing options...
Poohbear Posted November 30, 2005 Report Share Posted November 30, 2005 Thinking of you and hope you feel better soon.Good luck with your appt on Friday!I'm sending (((HUGS))) your way! Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted November 30, 2005 Report Share Posted November 30, 2005 I am sorry you are having such a hard time. Have IV's been mentioned as a treament option for you? Since you say you are so thirsty all the time- you're body is probably dehydrated. In addition, this is a warning sign of diabetes so make sure you let your doctor know about that unrelenting thirst. If diabetes is not the issue, iv saline can do wonders. Hope you feel better soon!Carmen Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted November 30, 2005 Author Report Share Posted November 30, 2005 Hi.. I am diabetic.. I forgot all about that!! I think it might be a double whammie of dehydration pots and diabetes.. my sugar levels havent been to terribly bad latley though...I think that if i have another rough night.. I might need a trip to the ER.. (which I hate!!) but am feeling that badly.. I have discussed IV's many times with docs.. and they all say they dont want to risk infection of a ah.. line being inserted long term...that and I am very difficult to get an IV into.. during my EP study last week.. they ended up putting the IV in my groin.. where they were doing the study through.. OUCH!!But they did say to save my rare IV use for emergency's..hmmm.. ok off for check my sugar and drink some more water.. geez i could float all the way to china the rate i'm going!! I have barley pee'd at all today too.. HELLO LINDA BIG red flag !! DUH!!thanks guys for yoursupportdizz Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted November 30, 2005 Report Share Posted November 30, 2005 Hey, I'm sorry you are feeling so crappy. Wish there was some sort of advice I had to offer you....I hope you feel better and plz keep us up to date on how you are doing.Take Care, Jacquie Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 30, 2005 Report Share Posted November 30, 2005 The autonomic roller coaster isn't much fun at all sorry you're riding it out. Here's hoping that you're leveling out soon. I know that when I have migraines and/or am getting sick, all my symptoms kick it up a notch or ten... give your body whatever rest it needs to get back to "your normal". Nina Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 30, 2005 Report Share Posted November 30, 2005 Hi,Sorry you are feeling so bad. I hope that you don't need to go to the ER but if you have to go I hope that they treat you well.Good night Quote Link to comment Share on other sites More sharing options...
gwen Posted November 30, 2005 Report Share Posted November 30, 2005 Hi my first input on POTS. Have struggled for 2 years but really all my life just no one would diagnose it.Have you tried humidifier in room? really helps sinus' (furniture too:-)) in winter. Migraines are a witch. I don't know how you can write. I can not take pain meds. make me nauseous so I rely on Percogisic over the counter. Makes me a little sleepy too. has a muscle relaxant in it. Can get it at Walmart. (Of course if you felt good you could) I am concerned with the thirst and not peeing. Please don't wait too long to go to hosp. I too have problem with veins. usually can't get pulse. hang in there. it will get better. I will pray to St. Anthony for you. Gwen Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted November 30, 2005 Report Share Posted November 30, 2005 Linda,I would tell your doctor about those nose bleeds. Sometimes they don't mean anything, but sometimes they indicate that something is really wrong. Of course, something IS really wrong! You shouldn't have to live with all those symptoms...and I know you've been living like this for awhile. I love that you are always upbeat and cheerful, though. I wish I had your courage. Take care, and email me anytime you want to vent!- Lauren Quote Link to comment Share on other sites More sharing options...
Mrs. Glass Posted November 30, 2005 Report Share Posted November 30, 2005 (edited) Sounds like your body is putting you through the ringer. Hang in there hope you get rid of that horrible migraine. Wish my magic wand wasnt broken, then none of us would be suffering with this stupid illness. Heres a great big HUG just for you. Mrs. Glass aka Vanessa Edited November 30, 2005 by Sunfish Quote Link to comment Share on other sites More sharing options...
yogini Posted November 30, 2005 Report Share Posted November 30, 2005 Hi Dizzygirl,Sorry you're having a tough time. It sounds like you need a doctor if this keeps up. I had a few nosebleeds last year, which stopped after I got my nose cauterized. I remember being really scared each time it happened. I never figured out whether the bleeds were related to POTS. My guess is that they weren't. I was taking florinef which may have brought my BP too high, either that or all of the stress I was under because of developing POTS. Hopefully you won't have another, but if you do, you should definitely mention it to your doctor.Feel better soon.-Rita Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted November 30, 2005 Report Share Posted November 30, 2005 sorry you are feeling bad. Glad you are getting into a migraine clinic. Maybe they can give you a permenent solution. Hope you feel better soon! Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted November 30, 2005 Author Report Share Posted November 30, 2005 hey folks.. i just wanted to pop in and give you all a quick update... I dont feel like loads better today.. but do afeel alittle bit better.. my BP is higher today about 75-80 over 58.. with a pulse between 100-120.. so my HR is better then yesterday.. and so is my BP.. still kinda low but atleast i can kinda sit up today!!My migraine is kicking my rump.. no relief there.. but hopefully yhings well turn out good fidau...with neuro...thanks again for he supprt guys! your the greatest! Quote Link to comment Share on other sites More sharing options...
Sunfish Posted December 1, 2005 Report Share Posted December 1, 2005 sorry you've been having such a rough time. i wish i had something more to offer but other than some (((HUGS))) and telling you to hang in there....and i know that's easier said than done. i'm late chiming in but just saw you post & seeing that it's the middle of the night thought i'd let you know that i'm thinkin about you. melissap.s. i used to get horrific nosebleeds so know how not fun they are to add to the mix too...hopefully it was b/c of dry air & whatnot and is now old history... Quote Link to comment Share on other sites More sharing options...
briarrose Posted December 1, 2005 Report Share Posted December 1, 2005 Sorry you've been feeling so bad. Multiple symptoms are horrible to sort out especially when the doctor has a snap to answer. Hang in there and if you're not improving be a PAIN at the docs office Quote Link to comment Share on other sites More sharing options...
corina Posted December 1, 2005 Report Share Posted December 1, 2005 Hi Dizzy,I'm very sorry you felt so bad lately. I hope you're doing a bit better today!Wanted to let you know, I'm thinking about you!Corina Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted December 1, 2005 Report Share Posted December 1, 2005 Linda,Gosh you've been through enough. I think for Christmas you should have no problems------ Keep an eye on that nose bleed. I hope your sleep gets better. The trouble is that we need sleep to recover from this illness kicking our butts every day, but if you can't sleep----then what?Wishing you better days ahead----and sending you a BIG HUG.Julie :0) Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted December 1, 2005 Author Report Share Posted December 1, 2005 thanks gals!!I'm really struggling today.. with the same stuff ... my tolerance for sitting up and standing is way low... and I'm about to go nuts from the dizzyness...I really hope that this "new" neuro can help me.. and atleast get a handle on my migraines...will let you know how it goes! Quote Link to comment Share on other sites More sharing options...
wareagle Posted December 2, 2005 Report Share Posted December 2, 2005 Hey Dizz,I was reading about your docs. not wanting to put in a line for IV's due to possible infections and thought you might want to ask them about a medaport. I've been trying to decide if I want to try IV fluids but insurance doesn't cover home visits so I haven't had any yet...anyway a nurse was telling me that if fluids were going to be required often and I didn't want a line they could put in a medaport. She explained that basically it's a disk that is inserted under your skin in a minor procedure. Then the IV's just are inserted into the disk and you don't have to worry about infections like you do with Picc lines. I hope that you start to feel better soon!! Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted December 2, 2005 Author Report Share Posted December 2, 2005 wareagle..thanks for he info about a medaport.. that is really interesting.. I have never heard of it before.. a disk huh?? Hmm.. definalty worth looking into!!tha would really help if I could get routine Fluids pumped into me.. I am at a constant level of dehydration all the time.. no matter how much I drink... gotta love this potsy crappola!thanks again for he tip... i'll let you know if it fly's with the docs... Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted December 2, 2005 Report Share Posted December 2, 2005 A med-a-port and port-a-cath are the same thing just differrent brand names. So, you can go back and read the stuff I have written about my port. You can also go to their website and see exactly what it looks like and learn more about the procedure. Let us know how your neuro appointment goes.Carmen Quote Link to comment Share on other sites More sharing options...
dianaD Posted December 2, 2005 Report Share Posted December 2, 2005 I am so sorry you are having so much trouble. When things are the worst for me, I just need a way to escape or distract myself from the misery. I have had to resort to taking a sleeping pill during the day to sleep through the worst of the storms. Or sometimes, my husband will just massage my back while I try to get through it. They are just miserable and there are few ways to escape.Please try to remember that they do seem to end at some point, or at least improve to where you are only semi-miserable! And remember that you are not alone, and you are not crazy. Hang in, girl.DianaP.S. can I ask you what "restrictive lung disease" is? I have an incredible amount of trouble breathing. Quote Link to comment Share on other sites More sharing options...
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