dizzygirl

Hi--i'm currently in the process of testing for mast cell activation...I'm "waiting" for a bad surge to comeon board so I can collect the pee!...then find a doc who is familiar with MCA to review the results.hmmmm... I'm having some serious ithcing and welting skin happening.. I called cardio net and they are sending me some super hypoallergenic leads... the leads i'm allready wearing are laytex free.. but obviously arent going over real well. I' am moving the patches around.. but.. in each spot that I move it too my skin is welting up big time.. and it svery red and itchy... and has a fever in each "spot'!.. I'm running out of clear un-irritated area's to wear the patch's and knowing my luck.. I'd take the patches off to give my poor skin a break and i'd have a spell while I was not hooked up!! I'm using some cortaid cream stuff on the itchy spots.. its helps a little bit..

jacquie--hmm.. My thought would be trying to find something where you can work from home.. at your own pace.. and take breaks and work at times that work for you.. I dont know how easy this will be to find.. a job tht canbe done at home.. Um do you have typing skills or anything computer knoweledge?? I went to a business school for medical transcription.. (i was so close to finishing!!) but had to stop going due to my pots.. but I had a long chat w/ the dean of the school and my advisior.. about my realistic carrer options and we came up with medical transcription b/c you can do it from home.. that is the only thing that i can think of off the top of my head.. I know I've been trying to think of part time do it at home jobs that i can do at my own pace for extra money.. another thought.. and I dont mean to offend any body here.. but have you thought about applying for welfare cash assistance? I know that its peanuts compared to as if you where working.. But.. while i was waiting for my SSDI appeal hearing.. I was eligible for full assistance until I had my hearing and either got approved or denied. I know that I felt very "weird" about having to apply.. b/c I was like geez.. I should be working.. not doing this.. but sometimes ou have to bite the bullet.. its just a thought.. I' wsnt sure if you knw that that might be an option.. though I dont know how thing work (or atlest not real well) in Mass. take care..!! and keep your chin up dear! hugs linda

Persephone--can you call 9-1-1 9an ambulance to take you to the hospital ?? here in the US.. if you call an ambulance to take you to the ER.. the hospital docs have to see you as a priority.. at least that is how its suppose to go.. I dont know how things work in the UK.. but the pain sounds horrible.. and I'd hate for there to be something terribly wrong with you and to not have you seen at the least.. is your heart rate up hihgn again? if that on call doc is so stupid as to ignore so very obvious signs that something is wrong.. I would ignore his advice of ignoring it and get your self to a hospital NOW!!! i totally understand your feeling about not wanting to go..but Persephone chest pain like you are talking about is nothing to ignore.. si there somebody who can come help you till the paramedics arrive or something?? I'm concerned about you!! please let us know how you are later ok.. that is what I would do Persephone if I were you.. go to the ER NOW!!! HUgs to you dear Linda

Hi folks I dont know who to talk to about this or where i should post it ..sooo I'm posting it here.. I'm wondering.. for over a month more like a month and a half.. I have felt like I've had like PMS going on no-stop..I'm very emotional..(meaning that i cry at the drop of apin) and my moods are kind of all over the map..and my breast are sore!! they have been hurting for a while...I havent had a period since december.. though before that I bled and had a period from august to the beginning of december.. and for a good 10yrs.. my cycles are HIGHLY IRREGULAR!! i can go 3-15 months w/o having a period.. so being irregular isnt to unsual for me...and other things.. the thought crossed my mind that maybe I was pragnant..but a blood test showed that not to be the case...so now I'm wondering if I've got a hormonal imbalance going on from something.. but I dont know what that something is...i tried talking to my doc about it.. the other day.. and that resulted in "its not PMS it must be something else.. that something else being a mental health problem!! GRRRRRR ..I do not have a mental health problem.. last time I knew a mental health problem does not casue your breast to hurt... and your feet to hurt like ****!! I'm very frustrated..and I dont feel good.. and I'm grumpy and snappy..you know the only way I can describe what I'm feeling. is like I'm having PMS.. I know that my pots has gotten severely more worse then it was even at the first of the yr. the past 6-7 weeks.. I've felt really really potsy and cant find the cause or the link.. i go see an endo crinologist tomorrow.. i'm hoping that she has some input.. b/c I'm normally not a basket case... I dont know I feel kinda goofy posting about this.. but i feel like I'm on a roller coaster ride that has no end in sight!! and pots is worse now then i think it has even been before..even in 2002 when I got severly symptomactic.. I think its worse now then it was then.. and there is no know cause reason for it..nobody can tell me why i'm paralysising now when I pass out.. and its scary.. but didnt you all know the medical people think I am CRAZY! my Bp bottoms out.. but ehy that is ok.. I have sever pain thru out my body but hey didnt you know that is ok too!.. my tummy hurts terribly.. but apparenlty that is all in my head too!! i puke my guts out and cant eat for days at a time.. but that is OK!! its normal!! GRRRRRRRR!!!! HELP!!! everybody thinks i'm crazy!! but I really am not!! anybody who really knows me Knows i'm not crazy .. a little goofy yeah.. (in a good way).. but I'm not crazy!! I think that it is safe to say that i'm alittle depressed.. who wouldnt be if your body was doing things that nobody can explain why its doing it!! and i think its a normal reaction considering thing!!

well you could tell your hubby.. "welcome to my world!!" I feel like that everyday!!!!

hi the monitor itself works great! I moved the pads around to an irritated ffree area.. under my skin where the patched originally were.. my skin is majorly red.. and my skin is welted! raised up.. and it itches madly! I took a shower and used some aveeno oatmeal soap.. to help with the itching..I'm going to call in the morning and ask them what to do about this..I need to find a way to be able to wear this thing the full time I'm suppose to wear it!! hmm we'll see.. i have such sensitive skin!! grr!

Hi happily married morgan!! here comes the bride!! I'm so very sorry that you passed out so many times yesterday.. my god thats horrible!! But i am glad that you got to have the cereomny that you wanted.. god bless you and your hubs and your family.. ihope that you will spend another 25 yrs (? am i right on the time you've been married) happy years together!! god bless --take care-- and take it easy for the next few days.. and heal those boo-boo's!! love and hugs to your momma morgan!! linda

hi folks.. i'm looking for pointers.. I got hooked up to the cardionet monitor yestedday.. and allmost instatnly i started to itch!! i'm super snesitive to stuff like this...they sent me the laytex free leads.. but I'm ithcing big time.. and i'm getting nice and rashy...(julie if you read this.. rememebr how red and itchie i got after my EP study?? ---its like that!! ).. and my skin is turning RED!!.. So i'm wondering do any of you have any pointers to over come the itchies from monitor leads..???? I've got some benadryl.. and am womndering if that will help the itchiness at least.. the irritation.. i'll have to dance around that... its pathedic just 24 hours into this .. and i'm so red and itchie/skin irriatated!! wow!! what trip! itchydizz

Julie you are not obese!! My god..!!!..by no stretch of the imagination are you obese or heavy or chunky.. nothing!!.. Now me on the other hand.. i'm a "BIG" girl--no ryhm or reason behind it other then POTS and medication.. considering that i used to be super skinny.. my nick name growing up (my aunt) called me bones.. as i was skin and bones!!.. Now she calls me meaty bones.. LOL.. lets here a HOO-Ra!! for the plus size women out there!! LOL :0 just kidding!!.. trying to be funny julie.. but no I dont think you are "Obese"... hang in there julie.. i know easier said then done!! HUGs Linda oh yeah.. about the pheumonia.. i think you might need a chest x-ray to rule that out...hows Kaela doing?/ I bet she is cuter now then when i saw here a few months back!!

amy- Hi_ I am wearing a cardio-net monitor.. it records24/7.. and i will wear it for the next few weeks.. it is pretty neat.. and reassuring to have it monitor and pick up things that i might be having but dont notice.. or things that i do notice..

Kristen..WOW!! while I have no pointers on melatonin.. I do hope that you are feeling better this afternoon. then you were about 12 hours ago!!.. gota love those "viruses" that we apparently just happen to have when ever we got to the ER!! Lol... the whole fever thing.. I think is more of a reaction coming from your body.. pots..uh the ans system controls body temp.. so it makes sense to me that you were tachy and having a reaction to meds that you temp is going to go up.. just b/c our body.. thats how things react... But Kudos on doling out pots brochures!! I know i'm running low on mine.. I hand them out to everybody... pretty handy! hang in there and I hope you are feeling better soon!! oh yes.. and i just realized that you were talking about menstration too.. shoot that will cause a temp as well.. and will also knock your potsy body thru a loop too...feel better!! HUGs Linda

hi folks.. i read the main page on NCS.. and now I have some questions for you all.. I'm wondering.. my cardio thinks tht i'm having drops in heart rate that are causing "some" of my syncope spells....as well as my messed up BP reading that are right along with the drops in heart rate.. my question is I guess.. can you still get a syncope spell if you heart rate drops lower then what your body is used to? verses waht the docs consdier low for NCS? .. i mean my pulse can run between 33-45 and i will still be talking.. though not as good.. but talking none the less.. I've seen my pulse drop quickly.. I watched it dueing a TTT afew times.. and I remember my pulse dropping from like 140-15- and dip down to 70 just like that.. and I was still standing there (though very symptomactic.. dont know how I stay conscious somethimes).. and the nurse jumped up quickly.. and said hey where are you going? and the doc came running back in the room.. then my pulse shot back up to the 140's range.. sorry short babbling going on there.. but that is waht I'm wondering.. can your heart drop from a fast rate to a low (yet normal) rate.. and then go back up.. can you still faint from that?? and then the obvious i wonder what my Bp and heart are doing when I do pass out.. I mean we have allready documanted Breading with no numbers.. so what the heart doing?? hmm.. sorry folks but i'm trying to figure this shtuff out in my head!! i'm hooked up to the monitor now.. have been since yesterday.. nifty little thing.. ad I've had some regualr potsy episodes.. but I want to catch the "cadilac" of spells!! time will tell acuriousdizzydizzygirl!! lol..call me curious girl.. instead of curious george!!

BIG HUGS for you dear!! feel better soon!! love and hugs linda

Kim--I'm a fellow nightowl.. though not by choice!!! ..i have horrible insomnia... so if you are ever up and want to chat b/c you cant sleep.. i'll pm you my IM address and stuff if you want.. i havent found soemthing to help my sleep.. i've had insomnia problems since i was a little kid.. have you tried sleepy time meds?... hang in there!

oh my that is funny! I'll have to remeber some of these!! for future use!! LOL .. i particularly like the my comforter is down and needed a freind!! hahha! oh yes and welcome to the forum!!

yeah I know mine pool too they begin to change color almost instatnly upon standing or sitting up. and I've had this since I can rememebr at the about 11-12 yrs old and always wondered why my legs would turn purple... now i know why!!!

thanks all for the support...I'm sending you each hugs! I'm not doing better today..still feeling like there is electricity zipping thru me..I have now moved into the everything from myhair on my head to the toenails on my feet hurt.. and everything in between.. and its progessing full force! OUCH!! i've been crying off and on all day I hurt so much and feel so icky.. I'm freezing cold.. and purely exhausted...I think if I would stopp feeling like i'm gonna hit the floor that I might be able to hadnle everything else.. I dragged myself to the lab today for yet more blood work! GRRR! I had to get a blood test for Mono.. as my dear friends spent a weekend here not to long ago.. and she was sick when she came.. and it turns out that she has MONO!! I'm like Oh great.. she says that its really contagious... .. so I had to get it done.. and a few other things checked... Ok I just wanted to let you know that I'm still alive! I'm going to crawl back into bed and bury myself beneath mountains of blankets.. I'm so cold that I am shaking..from the inside out.. and my skin is so cold.. despite the fact that I was under a mound of blankies for several hours!! good news though I'm getting hooked up to the cardionet monitor tomrrow afternoon.. they are calling me and going to walk me thru the set up process and stuff.. thank god b/c I feel like death has warmed over...the pain in my legs and feet is horrible!! still feeling like a puddle of mush/goo dizz-

lauren those are beautiful poems!! you truly havea gift!!

cool!! where they good melissa?? mmm they sound very good!!

wow Persephone!! holy cow!! I hope that you feel better soon dear. get yourself tot he doc soon!! Big hugs linda

that is very cool Melisssa!!

this is going to brief as I'm having a doosey of a time sitting up and functioning in general today.. I woke up feeling terribly potsy this morning.. and I got up.. and tried drinking some apple juice.. I was MAJORLY thirsty.. hmm ddint go very well.. get seriously nasueated.. and then the feeling of electricty started shortly after I got up.. and it hasnt stopped.. I feel drugged up big time.. and I've got that weird feeling i get before I have aparalysis epsiode.. I dont know how to desribe it.. only that those who experince probably know what I'm talking about.. its a bad feeling.. and i'm starting to jump and twitch all over.. i can feel in internally.. like my organs are mexican jumping beans or something... and its starting to show on the outside.. especialy in my hands and feet.. and left arm.. ugh.. you know the usual potsy junk.. I'm feeling like crap.. my boyfriend called and said that he'd leave work early tonight (i'm majorly surpirsed about that one).. he told me before he left for work to keep the phone by me so that it i get worse i can call 9-1-1,, then he's like looking at me and goes you arent going to be able to call 9-1-1 if you keep getting worse.. so he's coming home.. mighty nice of him.. i called my pcp and I told them I wanted NEEDED them to set me up for 2 liters of saline for home infusion.. and tht teling me to go to the ER is out fo the question.. they called ma back my PCP isnt in today.. so they'll call in the am tomorrow.. she wanted to know what my BP's ahve been so I told her.. and she goes well if your BP really was 0 then you wouldnt have been talking.. I'm like Oh No you dont! I told her that it gets like that often and that I had pased out cold and had paralysis less then 2 hours before i was at the docs office and gave her th name of the doc who i was at.. and told her to call herif she had doubts on the reality of my BP. so infuriating! i then called Dr. grubb office and got an appointment to see bev in less the 2 weeks.. so that is good.. ok i'm going to o lay back down..i'm so tired! I hope that the elcetricty surges stop b/c they are making me feel wacked out.. and sick.. and I'm shocking myself here if i touch everything.. the cat jumped on me and i shocked her she looked at me and hoped down.. LOL.. ugh my body feels like goo... or mush watever fits better.

morgan.. I am praying that insurance goes thru for you for this chair!! It helps!! let us know how it goes k?? if they give you a hard time I'll hop in my chair (imagine me doing that reclined full back going 4 miles an hour!! LOL .. )and ride it out there to the insurance company and kick there butts.. and i'l make sure that I wear some nice and pointy shoes too!! LOLLOL But I'm glad to hear that it is ordered dear that is great!! BIG HUGS to you!! linda

yeah I thought that Remeron was for sleep too. that is why I was given it. IF you start the med make your pcp give you the lowest dose..(ofcourse)..and chop it in half!! and then in half again!! --if its choppable.. I dont remember! would somebody be there with you when you would start the med?? I think that would be a very good idea.. I'm one of the ones who didnt have a good reaction.. and will leave it at that.. I would say sometimes you have to trust your gut instead of your doctor!! let us know how things go ok.. take care dear! hugs linda

hahaha! LOL that is funny!!