k&ajsmom

I had one in october. I am super duper terrified of hospitals, medicine of all kinds. I literally cryed for hours before they came to get me. I was so scared and had been up all night drinking 6 buckets of miralex and mag. citrate and earlier that day I had a nucleaur stress test, and iodine cat scan intrevenously and they did another one with oral dye. I havent had a procedure where thay have had to put me to sleep since I was 8 so I was scared to death with my bp and hr. However, to be completely honest I was mad when I woke up, it was the best nap of my LIFE! Despite the discomfort after ( they did over a dozen biopsies) I felt pretty good. My stomach calmed for a few days better than it had been for months. Im not sure what chalky stuff u have to drink cause I didnt have that but I know at one point I told my night nurse to drink the miralax herself, poor women, I was quite unhappy prepping. I had already lost 40 lbs prior to admission and had a hard time keeping any food in me as it was so for me drink a whole bottle of mag and 6 buckets of miralex was crazy. (i dumped some of them out when they werent looking, wouldnt reccomend this but my body didnt need that much) They did turn up my iv and switched it over to sucrolose and saline to keep my bp up and everything was completely fine while I was out. I remember asking the tech to hold my hand and watching my vitals as I fell asleep and right before I conked out I felt so relaxed and ok with the situation. I told the tech all my concerns and they really helped me calm down and feel safe, even though I didnt stop crying lol Im such a wuss..lol Good luck !!! Imsure u will do fine!

Thx, f I think I may wanna talk to my doc, cause thats a lot of pottassium, Im a little paranoid about getting too much with these pills but maybe I can lower my klor cons which would be nice, cause I hate them so much, its like drinking sand...blahhh much rather drink some mollasses. Thx for the tip dizzy, I miss pancakes and that sounds yummy with the walnuts and so healthy. I must really be craving them cause I have managed to talk about pancakes on 2 seperate threads today lol so gonna have to make some...sooon!

wow, the one thing I keep hearing and reading for sure is gluten is a problem for a lot of u guys. I tried going gluten free and made it 3 weeks until I was hospitalized and they wouldnt comply with my gluten free requests. I had to have a colonscopy doen and after I was so hungry I devoured hospital spaghetti like it was a lobster dinner lol ironically it settled with no problem at all and after the antibody test and biopsys came back negative I continued eating gluten since I didnt notice any improvement. Maybe I didnt stick with it long enough. I am lactose intolerant, which runs in my family. My sister passed when she was 2 with no definitive cause, however they "think" it was due to hemolytic urheumic syndrome cause by e-coli although she tested negative to ecoli, she had severe intestinal damage upon her autopsy. My brother and I had started devoloping similiar symptoms and were diagnosed lactose intolerant and adviced to go gluten and sucrolse free as well, by the time we were 10 we were on a normal diet though and seemed fine. My autonaumic issues started to get better as well. I would also wake up at night with horrific histamine issues, eyes glued shut and so dizzy I couldnt walk. Anyways, I think there is def something there with intolerneces and allergies and mcas I just cant put my finger on it the triggers. Ive kept a journal lately and nothing....but pancakes.....stands out to me. Im just sick with ...everything all the time even a glass of water. Im not fimiliar with donnatal, I have tried lamotil, which I hated thx to the atropine, I wonder if donnatal is similiar. Ill have to look into that one. I really hate to think I will have to keep taking immodium forever, especially since it only helps mildly and doesnt stop it. Thx for the tips and advice, I am gonna try them ALL and poss. try going gluten free again. =))

I know chronic use of antihistimines can cause tachy, however since I have noticed this reaction from zyrtec, I was only on 10 mgs of zyrtec, didnt have problems when I was on 20 mgs years ago. when I was in the hospital they had me strictly on claritan and I seemed fine, then again I had ivs running double time too so ? I wonder if I may be having a some sort of mcas reaction to something in the zyrtec though? some inactive ingredient suddenly triggering something, its just wierd that it helped a few months ago with tachy and now the opposite is occurring. I have noticed with doing anything physical as soon as I pause for a moment is when I get hot and dizzy but Im not sure it would be considered flushing, I dont get red very often and I never sweat. I guess I have to just experiment with some new ones and se eif something helps, I cant take anyhing D either, tachy like crazy, and benedryl makes me jittery too. wierd world of pots and triggers. cant wait to get to my specialist and get tested for mcas so I know what Im dealing with here.

thx for tip dizzy, Thats a recipe I can handle lol yea the bottle I have says it is a significant source or k, iron and calcium, seems its an all around winner. I haven't tryed it yet by the spoon but a friend of mine just said she grew up eating it on grits and pancakes....yum just wish my tummy could handle pancakes...=( they always make me so sick...

Thx Alex...its worth a try...and like u, I love pepperment tea and haven't had a mug of it in ages...gonna get some soon! Papaya and Pumpkin, Thx katybug never would have come up with those...def. worth a try. So far these sound much more appetizing than immodium lol and I am a little clueless why I have such severe gi issues until I get to my spceialist...in June <sigh>. Doc said it could be too much blood at times in the stomach and gi tract and other times not enough.......or basically he just has no clue. lol

sorry so many posts today again...Im feeling inspired to change some things, one being getting off as many of these chemically derived drugs as poss. I am dependent on immodium...sorry tmi...but it is what it is....even with the immodium I have a hard time holding onto food long enough to digest it, even when all I ate for 2 weeks was a brat diet....again sorry lol my question...... is there a natural supplement, essential oils or herbs that helps slow digestion and relax the digestive tract?? I haven't been able to find anything onlin.e..thx - sarah

I have been taking zyrtec for close to 10 years now for horrific allergies and asthma. Its always worked great fro me although if Im an hour late taking it I start wheezing or have a allergy attack that resembles the flu. I have always had histimine overproduction since I was very little so I have recently, after some of u pointing out the obvious connections to mcas, that I couldnt seem to see lol have been keeping a log to connect some triggers to my symptoms and worst days, so far the only thing I see clearly is my zytec causing more tachy. I started switching to just claritan to see if this would ease the tachy and ...it did.......? Claritan however is not holding other symptoms at bay... I am gonna get some other meds that have been reccommened through trial and error by others (nasal crom and allegra) but until then I was wondering if anyone else has connected an antihistimine to tachy? I really like my zyrtec, and would hate to give it =( This confuses me cause if I am having mcas related issues and have taken zyrtec for 10 years, and it helps me so much why is it contributing to cardiac symptoms now? Sorry about the multiple posts today..I am boycotting my doctor for a few weeks and I am trying to implement some changes, holistically, and just have to get everything fine tuned so I understand what Im doing lol

Hi, After some experiences from others and research I got some mollasses to try for my tachy. I have brady at night sometimes so I didnt wanna anything heavier and I love mollasses anyways due to growing up very southern lol. I am on Klor-con 20 meqs a day to counteract my florinef and pre-florinef hypovalemia. this keeps my K at around 4.1. Mollasses has approximatley 600 mg of k per serving, which is 1 tbsp. So my question is....how much mollasses to consume on a daily basis for tachy? and how will this effect my k levels? Also, any good recipes to consume it, other than cookies..nom nom..i dont need anymore cookies lol maybe some tea of some sort? Im not a creative cook...lol thx so much and happy new years eve

I have this same problem, they will go so "dead" at night I can not move or feel them at all....does not seem to matter how I lay either. I assume its due to piched nerves and muscles being inflammed for me combined with poor circulation in result. I actually do sleep with a stuffed animal( dont tell anyone lol) it just happens to be the right size to keep me from laying on my arms wrong or kinking my neck in a harmful position. My nurses laughed at me in the hospital but hey, whatever works lol I have found keeping my neck and back in proper alignment helps quite a bit, but just isn't possiable sometimes for me. Ive also found eating before bed makes this worse, again I think that has to due to circulation. However, Alex has some good tips..maybe eating the right things would be helpful. I tend to eat heavy at night...since It takes me all day to get an appetite. Maybe making night time a relaxing routine to get blood circulating properly and some calming teas and a warm bath....sounds like a plan for me lol Does anyone actually get a benefit from raising the head of their bed??? I dont really understand this? since my bp is so low when Im laying or standing I;m not sur eif it would be a benefit. In the hospital they always made me sleep head down, feet up sooo Im confused how the opposite helps? I have a water bed (still living the 80's dream lol) so Im not sure I could raise mine anyways

prayers and healing her way, and strength for u being such a caring friend...hope all turns out well

Hi, I can relate to how ur feeling. I have been dealing with auto dysf since I was a toddler and now at 31 with full blown pots and who knows what else. I def agree, it feels like it ***** the air and joy out of life, and laughing something that exhausts me as well and that really stinks....=( however, recently I have been trying to look at my emotions and feelings like grieving. I am allowing myself to grieve my ideal life, my ideal personality and so on. I hope and am choosing to believe that what I will become when this is either beaten or more likely managed a little better, will be someone that is humble enough to trust that what I want out of this life was not my purpose or calling. Maybe I am being groomed for something bigger, even if its to help someone else who needs a empathetic shoulder to cry on. I hope that I can get to that place of understanding and peace with it and for npw I am looking at this as lesson in patience and restructuring of my ego. Maybe all things have to be silenced to hear what is most important. Until then though....no way around it....it stinks...lol I let myself stomp my feet and cry it out somedays..I believe through tears comes healing and strength...so I will continue to grieve until I find mine and I hope u find urs too. The caterpillar gazed in amazement of the butterflys glorious wings =)

Im not sure about jury duty or the exact medical codes since there isnt one for pots, however when I first got sick my doctor wanted to put my mom out of work for a few months on fmla, to help me and he used the code for autonaumic dysfunction. He also wanted me to get handicap tags and used the same description for dmv, autonaumic dysfunction (cardiac) and had no problem with Dmv. If u have a doctor u see regulary I would call and see if there is a form or something he could fill out and fax for u stating something along those lines.Hopefully u have a doctor that can do that? Good luck =) and please know u are in my prayers for a speedy recovery and tons of comfort and calming energy is being sent ur way.

Thank u all for the wonderful repsonses, Seattle...hahaha die hard on ice, u took me back to the 90's there, I think if I looked in the attic I could find that one on vhs still... I wish the docs would do some more tests as well and the very least to ease my mind. My concern is when they admitted me, I started feeling asymptomatic (cardiac related anyways) except pvcs. So they never saw what happens at home, of course thats seems to be the way it goes for a lot of us. They saw the tachy and pvcs but the overfilling and skipping and odd feelings they missed and those things give me fear. But I guess I need to suck it up and "learn to live with it" as well...pun totally intended..lol Southbell....Like u, I have a nasty family history with heart disease and cardiac issues. All my uncles and grandparents have had major double and triple bypasses by the time they were in there fourtys, however I seem to have symptoms from my mothers side....low bp instead of high, low cholesterol etc so I know I shouldnt worry ....man if you havent hit the nail on the head with our systems are trying to tell us they dont feel well...so "doom" it must be. I guess I need to learn to ignore it?? however, I dont wanna forget it and still think a few more tests would ease my mind. I dont think Id worry as much if it wasnt for elevated cardiac enzymes while I was admitted...with no explanation....eeek abby....I guess we need to listen to our rational selves more. there is just no definate predictor to an outcome. Im so sorry about your dad, it just seems u are correct, God runs this scene and we are not allowed to rewrite the script but so much. I was thinking to myself today, as I forced myself to venture out of the house....if Im gonna croak, mine as well do it with a change of scenery. As awful as that sounds...it helped in a...wierd way lol bebe....I totally agree, when Im rational i know its my system blowing things out of proportion...but thats hard to maintain a grip on. Im glad Im not alone and have this forum but like u said. It would be so nice to have someone to relate with, flesh and blood, that I dont have to explain each and every "thing" im dealing with day to day. My fiance was asking me today...."so, how u feeling?" I said....with an eye roll...same as usual.....I tried to explain to him...my illness is like a circus....and each moment has a different crazysymptom with the strobe light on it...but just cause the other symptoms are not center stage doesnt mean they arnt there and I dont feel them. Then I realized I compared myself to a circus and new I was crazy lol I get so tired of trying to explain it in a thousand ways, Im running out of analogies lol..... Anyways, I honestly dont know how a therapist could help....I am not unhappy....I am sick...I dont need to imagine a happy place cause Im here....but I cant enjoy it, and all I need is my health sooo how can u help me with that ... this forum is a great therapy next to a fellow flesh and blood potsy lol It would be so nice to have someone to talk to that doesnt say "but u look so much better"....just because I happened to crack open the covergirl and maybelline that day...ughhh I have faith and was raised in it, however it is ...fragile at times. When I first got sick,,,and sometimes still do....question if God is teaching me a lesson or trying to change me in someway, I hope he is, then there would be a purpose to all this and I wouldnt feel like such a lost soul. He is not a magician for sure (well he could be, what do I know lol) but he is teaching me something, I just dont know what yet.......maybe its patience lol Misstraci...so glad ur holiday was well....I hate that so many of you feel the same way, because it really is...just horribale to live fearful...however in some way it gives me courage kknowing u get through it too.happy go lucky or not lol I am a grumpy butt these days lol My ususal sarcastic silly self only comes out when the right combination of fear and pain dissapaite for a few moments...I miss feeling relaxed. My fiance says he is actually happy to see me get mad sometimes cause for a while I went totally and completely numb with fear. I am even shocked how numb I was...Fear is crippling for me and honestly without you guys I think Id still be in that place where I could not even address this at all. In the hospital, they initial told me I most likely had cancer and to be prepared so the fear of losing my kids and them losing me was .....overwhelmingly horrific to say the least. I totally get how u feel with that. Now Im just scared Ill be alone with them and drop and scar them for life...I know my imagination is stoking the fire and I need to just live for each moment with them but its so hard to when ur ans is saying....AHHHHHH call 911!! <sighhh> Pots is such a dramatic illness physically and emotionally SPinner...u are so right...emotional health and balance is completely relavent to physical well being. The fear just keeps me from believing it and Im spinning in circles some days trying to get a grip on the hysteria in my brain. In the beginning of my downward spiral i remember standing on my front porch at 4 am and crying (and talking to myself lol) saying I have gone crazy, thats it, im just a loon this is all in my head and Im making this all happen. I have changed that way of thought however being that my symptoms were just....so obviously undeniable. I however think some part of what I originally thought may have been a healthy reaction. Some of this is in my head, certainly not the majority, but the fear does, in my case make me sicker. I am learning, slowly and stubbornly to trust God...without yelling at him =P he is a good listener and puts up with a lot of my guff so he must love me enough to keep me a little sane lol I am lacking in the friends department to lean on. I recently had a freind of 16 years steal all the money out of my business account. I have forgiven her, even though she is not sorry and although I am broke and maxed out on credit being I cant work now, I dont want the money enough to pursue it. It took a lot out of me but rebuilt my trust in myself and ones I love. I have one good friend I trust with my life, after that. and she has been running my business for me so she is busy and we cant chat much. I wonder at times if God is silencing everyone else, so I can hear him without any excuses. =) Pumpkin....duh...why didnt I think of meditation lol thanks for the link. I think this would be a grreat start to the day to shut my brain up lol yea, therapists kinda have shed a poor light in my past so as much as my mind says u need help here, I htink with encouragement, I have the knowledge I need to heal , Ijust have to let it happen. When my ex-husband walked out on us...i went to a therapist and she said "go to your happy place when you feel anxiety" blahahaha ummm yea..ok, that'll fix everything lady.... anyways, I am a bit obssesive in my thoughts and I will always be a worrier., but this disease takes it to another level and cancels out the parts of my personality that kept that kind of behavior in check before..but I cant say how much it helps knowing Im not crazy (totally anyways), and Im not alone.....=0) targs....fearless....ahhh...that was me as well. By the time I was 19 I had travelled to everystate, coast to coast in a pop-up camper with barely any cash, meeting new peole everyday, sleeping in the redwoods and dreaming of living in Seattle one day and being a writer. I had my daughter soon after, I had survived a horrifically abusive relationship where I almost lost my daughter, among so many other things. I loved to be moving constantly, loved the thrill of anything that got my adrenalin pumping.....and now......Im scared to go get a loaf of bread and lord forbid there is a line at check out...ill just get it later, breads overrated...wahhhhhhh....lol Astounds me how much I have changed, some of it out of maturity in a good way but alot of it out of fear from not trusting my own ability anymore. I think ur theory is brilliant. It is somewhat a side effect and I need to treat it as much and stop giving it power to predict my recovery. That is however much easier said then done at moments. lol I think ur absolutely correct as others have mentioned our bodies are in flight mode with all these chemicals being out of proportion, but the way u said it makes since, u have to pin it to something, ie; the trip to the store etc...this is a helpful way of thinking about it to me and I thank u for what I couldnt articulate or connect in thought. =)) I apologize for my lack of grammar and spelling....I know its awful right now.... and Sorry about the long replies to everyone, I know is a lot of rambling thoughts, but u all mean so much to me with ur replies I felt I wanted to respond to everyone individually because whether you know it or not ur thoughts and words have been priceless to me....Take care and big hugss =))

Ok so assuming you have fear of course lol My whole life I have been a layed back easy going person. I always have had a joke to crack and am usually the one that people call to cheer them up. I have always taken everything in stride thinking, its only temporary, might as well make it funny, laughters the best medicine , right.... ? Ive been through more than my share of hard times, somethings bordering on tragic and nothing has gotten me down for too long. I also have always had autonaumic dysfunction, first crush....4 grade teacher, Mr. (dreamy) Barnett, why? well because he carried me to the clinic everyday when Id hit the deck in his class and said "no problem sweetie" and then sneak me a soda from the teachers lounge. As I got older I didnt even bother me that I was excluding myself from activities due to my health, like going to the beach or a theme park, I just knew to feel better there were somethings Id have to sit out on to be able to enjoy the things I could do, so its not that I cant deal with being sick but since it has developed into POTS, I cannot get the fear under control. Ive have developed a horrific fear of....well....dying. I cant seem to help it or control it. While I was in the hospital it just aggravated and grew this fear, which I expected, because I loathe hospitals but when I got home is when it crippled me. I am constantly worried to push my heart, being that it always feels ...exhausted?? I am so scared they missed something, and it mainly stims from my cardiac symptoms. They did lots of tests and I ve had hypotension long as I can remember and have had many a conversation where the person Im talking to doesnt know I cant see them cause my vision was blacked out. Id wait it out and pretend I was fine and honestly I felt I was, it was second nature. The cardiac symptoms are so unnerving I am scared to move some days. Im finding it hard to recondition myself from this. I do feel awful, however I feel alot of the little bit of energy I have goes to fighting the fear. I try to give myself a break and say it will pass with time but its not...and I just dont have many moments that I feel well, between living in the bathroom and headaches,wierd symtoms and exhaustion i dont wanna waste energy being scared my hearts gonna stop if I go grocery shopping...ugh...I have constant tachy/brady.forceful beats/pvc's/ and just a feeling of breathlessness from it. Gabas dont help, they crash my system and ....I am a bit of a pharmacophobic soooo the less meds the better for me. (geez Im a mess) Sorry for rambling and venting but I am so OVER IT. I know I should maybe seek a therapist for this or something, but honestly....they are just gonna tell me to go to my "happy place". or find peace about my mortality, but these arent panic attacks, this is constant. I have faith in God but it just seems to be not taming the beast within so to speak ... Do others have fear like this??? does anyone else worry about their heart like this? Part of me feels like I am making myself worse and the crazy side says, nope...there is something wrong that they dont see??!! How do you deal with it? how do you go to work and drive yours kids to the store?? I cant seem to do these things on my best days?? Im scared to take a shower or vacuume the house?? I have missed half a year with my kids, trick or treating, school plays, christmas shopping.... Is this a normal stage of healing or coping??? I hope someone can relate, cause I feel like a hypochondriac sometimes, like POTS cant kill you, so why do I feel like Im gonna keel over all the time!! Again Im so sorry for the post, these are things i am not willing to share with others because it just grows the fear in me when I say them outloud. Kinda like monsters under the bed....thx for reading if ya made it through all that lol Hope everyone had a blessed Christmas =) -Sarah

That is great you found this doctor, and wonderful he is intelligent enough to question previous conclusions. I remember the first doctor to tell me I had cfs. I asked what is that? and he responded with " well.....its what we tell people that are tired and dont feel good and we cant figure out why...just like fibromyalgia, its called a bucket diagnosis we doctors have, we just throw it all in there".......jaw dropped, and never went back to him again.

Oatmeal and eggs are two trigger foods for me. A billion years ago when I had rast and allergy testing, I responded to eggs and tea, two things I consume frequently. Oatmeal I'm not sure if I have an allergy to but more I think it is just hard to digest ( like gluten) and triggers gi issues to worsen. If I feel well I can consume these foods, if Im sick, like for the last 6 months( ugh) they effect me, severly. I think for me it may be an mcas issue. I have noticed if I hard boil eggs for some reason they dont effect me as much, but they certainly dont taste as good as scrambled or over easy... Im with you though, these are staple foods that are quick and easy, so its really hard when the budgets tight and you have to find a new nosh that doesnt involve sprinkles or marshmallow balloons lol. I wonder if just egg whites would make any difference?

LOL I just wanna give u a hug {{{hug}}} I have been very grinchy today reading similiar posts, and although I realize before I got sick Iwas just as whiny with aches and pains and illnesses, that are all very valid just on another level, I was getting sick of hearing it.I always feel guilty when I complain, so other than this forum I dont talk about it much. I am sitting in my car right now, that I havent drove in 6 months, in the middle of a bustling Target parking lot, on Christmas Eve because I cant get out of the car and go in. Santa forgot something when he was ordering online so my chaffeur (haha) has been sent in to hunt for a needle in a haystack. Im sitting her leaned back, nauseaus, heartrate wildly high and chest pains with the window down trying to catch my breath...from doing nothing and this lady walks up next to my car to get into her Mercedes and she drops her Starbucks. She then proceeds to rant and throw a hissy about her horrible holiday, shes been cooking nonstop, hosting company, she's gained five LBS and she has to shop in lines that arnt accomadating to her schedule and now shes dropped her MACCHIAATTO...OMG!!! lol I had to contain the urge to whack her with my middle class pontiac car door and tell her to suck it up LADY, however that would take some much needed energy that Ill need to drag myself from my chariot to my castle once I get home, and I dont wanna be too tired to feast on my McDs when I get there, just too tired to go to xmas eve dinner at fams house. (sorry my sacasm is riling up) I felt so much better just reading that Im not the only one a bit frustrated with others health and problems. I would kill to just have the flu or just have a cold or drop my coffee!!!.....<sighhhh> I cannot make plans tommorrow cause I cant predict if I can manage to even get dressed and was feeling sorry for myself, but you reminded me I am not alone and alot of people are sucking it and getting through ALL the holidays, and workdays and shopping days and just plain old day to day so thank u and I hope u have Merry Christmas and your rant was just what I needed...=))

hey Issie, I definatly think there is something to that. Especially the beta-endophins. I def can associate with the "high" from the sugar. Thx you have given me a lot of sirection and I have been doing some studying on these theories and it seems to all be starting to make since. =)))

oh ps....I hate thigh highs, Im not sure if they do this to everyone but they slip down after awile and I feel like Im always pulling them up, plus I was told by the lady that fitted me they just dont do as good of a job as waisthighs. I never did calf high didnt think they'd work and would have the same problem. My doctor said compression all the way up is best.

Hey J, I got Jobst waist high 30/40 compressions, extra firm,doc wrote a script for them...they are soooooo difficult to get on though I skip them somethimes cause they wear me out gettin on...I literally break a sweat and have to lay down lol They were pricey, I got them at med emporium for $130? I wouldnt pay that again though. I went to a website called compressionsale.com and you dont need a script and there are several brands varying in price that are of decent quality.I got a pair of nstyle's for $30 that were pretty good. You kinda get what ya pay for with these though. The more expensive, the longer they last but again I wouldnt pay $130 again. Theres another site with some really stylish ones..I think its rejuva health, Im saving for a pair of those next. They run about $50 and up there. Ive wondered about footless compression for the summer so I can wear sandels, I hate shoes in the summer. But I thought with being footless wouldnt they trap more blood in your feet?? Does anyone know?

eek...so sorry your in a brace, I am glad your past your surgery but I know it must have been so dissappointing to have the symptoms worsen after the surgery. I fractured my neck at age 9 and was in a brace, thats when mine started. 2 car accidents later, docs say surgery or suck it up..I am phobic of surgery so...lol ugh I think I was born with some underlying factor , have always had an overproduction of histamine ( looking at mcas) and I feel maybe the neck issues have contributed to the worsening of auto. dysf. as well as some other contributing factors. I feel like a cocktail of contributing issues that seemed to make Pots inevitable. Now, atleast its a cocktail party...haha anyways, its all very interesting to see how we are all so different but the same...I hope you dont have to wear your brace much longer and feel better soon. This is my first full fledged "flare" ( although I was ridiculously ill as a child) as an adult and its lasted since June and Im with ya, OVER IT and ready to move on.

Yey, indeed Naomi, hope ur doing well =) Amy, Thx and I hope ur doing ok as well. I love this doctor, he is sweet, kind and compassionate and takes me very serious...BUT u are right, he may not be the man for the job lol...I am his only POTS patient ever... I am conflicted on this. Not many doctors around here know what pots is so that fact that he does and is willing to keep trying and learning with me is better than the old doctors who said " um...you have reflux, and uhhhh anxiety?? even though you dont look anxious??" So I hate to find a new doc at this point, he also works with me on payment, being that I am self employed and have no insurance. He would come in from home on the weekend if I needed him to. However, I do have appointment with a specialist, Dr. Chemali formaly of the Cleveland clinic, in which all my hopes lie. So I look at the doctor I see now as someone to help me maintain not cure me. I hope Doctor Chemali cna pinpoint the issues and help guide my primary care. My appointment isnt for 6 months so I am just holding on for now. I will admit though he does treat me like his daughter and gives me this look of "dont you argue with me missy" and though its sweet... its frustrating....lol Thx for your feedback and take care =)))

As u mentioned Gastrocrom being pricey is a problem, def. havent hit the lotto lately lol I have applied for some insurance but being self employed with a pre existing condition is not moving things a long.... however I am going to pick up some nasalcrom, I looked it up and have read very good things in regards to mast cell stabalization. I am horribly unorganized by nature so I havent started a journal until you mentioned . I sat down and started one, Ive thought about doing it after reading about triggers but just kept procrastinating, so thank you for the motivation there. One thing I didnt mention is I own a Cleaning business and for four years have been emersed in toxic chemicals. Even when careful there is only so much you can do. Now, I would blame my condition on that except Ive suffered since I was a toddler, however maybe the work Im in just sent it over the edge. I havent worked since October, because physically I can barely function as of late and Im not sure Ill be able to go back and expose my self to the toxins and physically its hard work. I may have to turn my business over to an employee and seek disability for a while till I can find a line of work I can handle. Anyway...lol U reallyhave been quite motivating and helpful and cant thank u enough for your kind :experiences: I am gonna play with these meds and try to get the dosages right for me and keep learning....=0) Oh Ps. I know I ve been rambling on and taking alot of your time but does anyone know: When I have a allergy meltdown lasting over 24 hours I begin to crave sugar, uncontrollably. I binge on it. till it makes me ill. I am not one to eat a lot of sweets so this is wierd for me. My glucose has been borderline through all this though so I try not to, but even when I have no sugar and eat small and healthy meals my sugars been running around 100-112...I reviewed my old labs from when I was heathier and it always ran between 70-88...is something with mcas or just a comfort eating thing lol

I agree, I have wondered if there was a relation to with my neck problems and Pots. My head/neck pain started very young and over the years with injury and car accidents has gotten quite debilitating. (My autonaumic dysfunction started when i was a toddler, chicken or the egg dilema?) I am waiting to get to a specialist (in June 13' <sighhh>) but I am curious about Chiari malformation. I have read the symptoms can be brought out by injury, I also think I may have some mcas issues, so I really am a little lost?? All my pain is generated at the base of the skull and neck but radiates...everywhere ugh. Ive tried everythng for the pain to no avail. Treating my tmj helps moderatly. Im am curious, did your issues with your neck start after injury?? and has any treatment helped manage pain?? haha I wish I had more brain cells. to figure this out..its a wonder I find my way home some days =0)