dizzygirl

Hello folks... I was wondering i know there have been alot of discussions about pots and pregnancy..But have any of you ever taken fertilty medication after developing pots? I was told almost a yr ago.. that i would not be able to have children at all..infertilty is a big and very real issue for me.... i was devastated to say the least.. well after alot of dr.s and questions.. I met with a endocrinologist.. and have talked alot with my OBG...and said it is still going to be very very hard if not impossible for me to concieve but they think that if they can treat my pcos.. and get my ovaries up to parr again that I "might " be able to have children when im ready... But that "might" involves me taking fertilty drugs to help things along..among other things.. starting with clomid... then working on other things..if that doesnt work I was just wondering if any of you on here have every done fertilty treatments after developing pots? and how did it go?? Of course I have to be ablot more stable pots wise.. and i sometime truly wonder if that will ever happen...and my cardiologist(s) have to approve/be on board in regaurds to fertilty treatments.. But i feel that I have had to give up or rethink alot of my goals in life and having children or atleast one child is not something that i want to have to miss out on b/c i am too sick.. or b/c of the complication that may arise from pots.. not to mention fertility issues......((((((((((sigh)))))))))) now im starting to ramble.. LOL.. any insight would be greatly appreciated!

so sorry that you are now dealing with fainting it is not cool at all.. and canbe very scary to go thru.... i hope that your docs can figure out what is triggering them and find you something tha might help relieve your fainting.. hang in there and rest up and take it easy till you feel back to your normal baseline hugs linda

ernie hello! Um i go thru cycles where i have insomnia and these sleepy spells.. each can last months at at time.. when im thru a cycle of alot of adrenaline surges i do not sleep much at all..

Oh yes I get this all the time...I get the pounding in the back of my head and in my ears...I also will feel it thru my body.. primary spots being the bottoms of my feet and my booty...that is a weird spot to feel you heart beating. . and also my fingers I get it too Um I get the heart pounding when i lay down or when I stand up.. or am standing to long...I dont know why i get it.. I am speculating maybe it s blood flow problem? I dont know.. Uh oh and i get the pounding when i am really over heated or my BP is spiking.. do you get dizzy when you get the heart pound ing your head? i hope that you feel better..

ernie soo soo glad to hear that you are improving and making progress.. that is wonderful!! love and hugs linda

doing a search online.. and i typed in sudden sleepiness.. and narcoplsey came. up.. very interesting reading for me that is for sure. While reading i read that people with narcolepsy "can sometimes" aslo have sleep paralysis..all the stuff i just read on narcolepsy sounds like they wrote about me and what ive been delaing with for well years.. i began having sleep paralysis when i was a kid... Uhm but to my point.. I know that there are folks on the board who suffer from various form of sleep disorders.. I was wondering is it commmon for people with ANS probs to have these issues? sleep issues? or is this still kind of unknown? And how many of you who have a sleep disorder have to wait yrs for s proper diagnosis? DO any of you have narcoplepsy? are you on treatment for it? and does it make you overall feel better? Oh and those of you with other sleep disorders same questions... thanks

thanks corina and rachel.. corina i like light and dark pink tulips.. they are my fav color tulips.. i like yellow tho too

oh thank you for the update em! Melissa Im so glad that your kitty came to visit you as the easter kitty! how cute!! lol.. also its great that OT is find ways for you to get a shower.. i know youve SOOOOOOOO got to loving that up!! can they hook you up with one fo those reclining thingys for home? with help of course... I know it poops ya out.. but atleast it would be there for you.. so youd have the option ya know.. take care honey still thinking and praying for you.. wish i could get there to see you! and give youa hug in person! love and hugs linda

Oh Linda im so saddened to read how you where treated that is just horrible... Just wanted you to know that im thinking of you and adding you to my prayers! manymany hugs dizz

hope that you feel better soon jacquie! hugs

i posted earlier in the week about my rough week.. well it is not getting any better.. Ontop of everything else.. I keep getting these sudden feelings that ive been drugged up.. and i get very lethargic.. and Im very near a feeling of fainting.. But its is kinda different from my normal presyncope cr%p i feel..i dont quite know how to describe it.. I have had several of these "episodes" in the past 3-4 days...i need assitance walking when i get like this.. my legs its like they have forgotten how to put one foot in front of the other.. my upper body kind of feels like its heavy and weighed down.. yet at the same time my upper body feels detached and fuzzy.. any my legs are just like to blobs of nothingness..i am so incredibly unsteady when tis happens.. once im get helped to the couch or the bed.. nearly instantly my body is out.. im totally asleep...right before falling asleep i feel complete fuzzy and disoriented.. my head especially feels the fuzzies.. But IM am out like a light.. I fall into my comatos stae of sleeping and i sleep anywhere from 4-9 hours straight after these spells... and im just done in for for the rest of the day.. cant really stay awake for any real amount of time.. and just totally and completely whiped out.. my b/f and i talked about it its something that im eating or drinking causing..something in my food doing? but my appetite is like gone.. we also wondered if im having some adverse reactoin to my meds.. But my everydays meds im on.. ive been on for like a few years i think.. so why would they be monkeying with me now? I dont know.. but this is scary and freakin' me out! geez it makes me feel like th reeper is knocking on my door...UGH

nadine.. thank you.. no its not anything new going on.. same stuff in such a bad flare...i have an appointment next week with my pcp.. tho i think im giong to call him sooner.. radha--rip thru your skin now that is an acurate description! I have vicodin small dose.. But it does nothing really for pain.. except put into lalla land.. and it REALLY messes with my pots big time..I asked for something stronger something moreeffective (demerol that help a little) but IM allergic to a ton of the heavy duty pain narcotic meds.. and my pcp is afraid of giving me anything stronger.. 1. due to what if i have an alergic reaction.. and 2. he doesnt want to monkey with aggrivating the pots.. which i totally get.... BUT.. i really need some effective pain relief and i need to find the real cause of all this pain im in day in and day out... and it would be nice to figure out after figure out waht it really is waht the heck causes these flares.. **generally** ive noticed that sometimes in the past when im in a bad flare like this that w/in a few days of a flare that i get sick...i really hope that that is not the case here..b/c that would annoye the hebbie jebbies right out of me! my spine OMG!! sometimes i wish we didnt need a darned spine when it gets to hurting bad.. yucky yuck..OWEY

congrats on your pregnancy! I hope that you dont have alot of fainting issues during this one...

hey all do any of you get fullness/intense pressure in your ears upon laying down? I will wake up and my actual ears will hurt.. not earach hurt but ear ear hurt... and there is so much pressure in them its unreal! I find if i adjust my head/neck in a different position that it sometimes allevies this feeling.. anybody get this?

MAXINE~~~ i was thinking of you yesterday and today wondering how things went.. Im so glad that it went well..just wanted you to know im rooting for you!! glad dr. tinkle took you seriously that is so imnportant when dealing with all this stuff... talk soon love dizz

Oh Im not liking my body this week folks! Im having a really bad flare with my spine and my bones hurting really really bad..there is so much pain in my spine that it has me in tears.. and is causing such an intense headach.. that i just cant stand it! My Bones in general feel like they are going to shatter into a million little pieces.. and actually so does my spine...my skin even hurts..and my hair hurts..yucky tuesday iwas so incredibly dizzy that i spend a majority of the day on the couch unmoving.. i kept trying to sit up.. and i was so dizzzy!!.. I did get small boost though after drinking some pickle juice.. made me want to barf.. but i got a little less dizzy... wednesday.. wsa bad too... I sat up only for a short time wednesday evening to eat some dinner.. whic i had to force down literally.. and with in 20 minutes of eating i felt like i had been drugged and was very lethargic.. i laid down and like instantly i was asleep....i was in one of those coma sleep i go into.. i woke up at like nearly 3am.. and i tried getting up to pee...and i was bouncing off the wall going down my hallway.. and i have night light all over my apt. so i dont have to contend with alot of light in the middle of the night.. and i was so dizzy and my vision was so blurry.. i was trying to focus my sight and i wsa seeing things in like 20 or something like there where 20 bajillion door frames and 20bajillion door nobs.. freaky i tell ya..and the chest pain..feel like and elephant crawled inside my chest and kicked the crud out of me from the inside out.. ugh low and behold i was awake the rest of the night..this morning i finally got to fall back to sleep.. But my pain level has reached beyond a point of no return...and i kept waking up crying and was tossing and turning... even my skull head bones hurt! grrrr.. and one last thing my tummy and my guts are in an uproar...i have like no appetite.. and i m having such intense feeling that my guts are being ripped apart.. and sharp stabbing pains that it doubles me over.. that is so not cool.. my insides feel sore.. does tha make sense? UGH ok whiny session over.. im just having a rough week and neded to vent about it.. thanks

my goodness that made me cry reading that.. Im glad that she is going to go home.. but yet im scared for her too! my goodness... melissa.. girl you are an inspiration to me.. I think of all that you have an are going thru..and how you still depsite how sick you are.. support all of us.. and are here for us.. your amazing...I hope that you can be comfortable.. and that you get to spend more time at home with family friends and your kitty czar of course! But my point when i think of all youve been thru.. you give me inspiration to get thru the day and make the best of waht is handed to me... you are so full of love and light.. you hold on tight to that my dear! we all love you and are hear rooting for you! love linda

Morgan.. you have been thur the ringer when it comes to getting proper treatment that is for sure.. I have talked alto with my home cardio/pcp/neuro.. and my pots specilaist doc.. about my paraylsis stuff.. my cardio here after i told him about what i was experiencing and about wht i found online about PP and sleep paralysis.. he agree's that he thinks I have 2 seperate paralysis issues going on.. He told me that I was going to have to travel outside thearea.. more likely outside the state to get a doc to treat me.. b/c you dont see PP in everyday treating of Pt. he had never had a case till he met that is.. my docs here are not comfortable treating me... im fortunate that my doc believe me and they havent pulled that psycho babble crudd with me.. the problem is they like i said arent comfortable treating it.. its not there are of specialty I have an appointment at the cleveland clinic next month and im going to ask for a referal.. all i know is my body seems to keep going into over load.. as the paralysis spells like to come in droves..and some times all you can do is cry..once i can move and speak that is..they really drop me for a loop.. my POTS specialist (he is the only one who "tried" to treat this).. well he put me on diamox back in cotber to treat my paralysis spells as well as brain swelling.. well the medication did not react well with me.. and no further meds have been given to me.. so i try to eat potassium rich foods to keep my levels normal...I still have PPspells even when my levels on blood draws are normal... have to experienced this? any way morgan i wish you luck next month at the clinic.. i do hope that they can come up with a concret answers for you.. and something that can help you feel better hugs

thank you morgan.that was helpful.. began doing some reading... and thanks corina your a sweetie...

what a cute kitty cat! he looks alot like my bfs cat spazzo..very cute :0)

I was wondering over the weekend i saw my family...and my brother was telling me about something that happened to him the other day.. he experienced his first paralasis episode.. and my mom stated that she has experienced some of the same kind of episodes of paralysis.. i was floored! i was like holy moly!!! and that got me wondering if there is some kind of genetic componet involved in not only dysautonomia.(in me and my case/family). but the paraysis as well? anybody known of anything like this? my mom has alot of symptoms of pots..my brother has some as well... im wondering if there is an adrenaline thing going on too.. but that is a whole nother post! i get the worst of my paralysis episodes when im going thru my really bad adrenaline surges.. that is why im wondering if there is an adrenaline thing going on.. verses it being a potassium problem..(i do have low potassium levels sporatically.) I have 2 seperate paraylis epeisodes going on.. i have the ones that are related to low potassium.. but t hose are few and far between.. and are horrible to go thru..But the paralysis episodes that i have on a regular basis I believe are related to something other then potassium b/c the symptoms and I guess presentation of the spells are different from the other ones.. I hope ive made sense.. my mind is kind of not function properly today.. and i think i may have repeated myself and got thing a bit jumbles! sory thanks a bunch folks

oh yea.. compazine also makes me REALLY sleepy.. so be careful if you take it.. dont drive until you know how its going to affect you..

jacquie hi i have been on both medications.. compazine in pill form for me sometimes helps sometimes does not just depends on the day.. Now if i recieve compazine thru IV it works SOOOOOOOOO much better the pill form.. I was on amitriptyline for pain issues back before i got full blown pots... Uh it caused some weight gain for me.. and thats about all i remember about it.. Im sorry that i cant remember if it actually helped or not..I went off of it.. but again dont remeber why! alot of help i am! hope that your feeling better and that you find something to help your nausea hugs

thnakf or the updates ladies! Melissa still thinking of you and sending prayers and some postive healing energy your way.. much love and hugs linda

HOORAY!!!!!!!!!!!!!! ERNIE!!!!!!!!!!!!!!!! Im so so very happy to see you on the board again you've been very missed here.. also im so happy that you are now home in your own bed.. and im sure that you where just as happy to your doggie and your doggie was to see you i cant even begin to imagine waht 3 months in the hospital must have been like for you.. oh my..im glad tht you are improving tho ernie that is great news.. do they know why you took such a turn for the worse? I know you'd been havinga hard time... all in all glad your back dear much love and hugs linda