k&ajsmom

Thx guys, sorry took so long to respond. Its been quite a ...day <sigh> this momma is tired of drama. I have essentially just layed the law. I hate to be mean to anyone but when I get my fill, especailly since pots, I am just done with it. I basically layed rules down...number one being "if ya wanna fight , write your complaint down and put it in the suggestion box and its over there, I call it the trash can" lol Awful I know but fighting just not my thing. I continue however to get attitudes consistantly the last 2 days and I know some of it is his med changes but some of it is just that I am not putting up with it and offerring my sympathy for temper tantrums anymore. I refuse to spend my spoons on it!!!!!! Id rather take a shower and be able to shave my legs lol Pots is life changing for me, and Im still wrapping my brain around that so if my loved ones cant be supportive then well......theres the door and I will rely on God to carry me through. but goodness if it isnt frustrating. I do know I have to learn to be more patient (and forgiving)but I am still learning and thats all I can do for now. Thx for your support and I hope you are all well. I think I would have lost my last shred of sanity if I didnt have you guys

Angela, you have my motto for choosing which one initially to take...".hmmm...that one is on sale and hey I have a coupon " Moneys tight so Im gonna stick with upping doses and being consistant with it before I switch. Im glad its helping you, even if its a little. I think if it would just calm my heart down I would be a happy camper.

yay! so glad this is done and went well. Congrats and I hope things move quickly now for you.

wow, I hate to say Im glad im not the only one here, but I guess I am. I just cant get moving even when I feel I could fight past everything else because of these wacky pulsating irregular beats, let alone the tachycardia. Its so unnerving because everything in your being says STOP WHAT YOUR DOING!!! and it does make me symptomatic. And its constant, predictable and even when I feel ok...its like its not even fully connected to my pots symptoms sometimes. The tachy is always but not these pulsating beats that almost ...hurt and make my eyes throb. AAP, So far , thank the heavens I have had only very brief runs of afib, under 30 seconds. And to be honest it felt funny but not much different from a pvc for me without the thump or boom feeling of the pvc. My first verified a fib was in an ambulance. I went to the er and they sent me in a ambulance to another hospital that was wanting me admitted. My pulse had been high and irratic all day (not unlike...everyday lol) and my bp was around 70/40- 80/50...also not too far off from now... but I was laying in the ambulance (which I am terrified of lol) and something felt funny,I looked at the paramedic and said what was that?? she said ohh just a bump, but when they admitted me she told thenurse I had a run of a-fib, I have no doubt thats what I felt. and of course I had a few more that week. Doctor said no worries, ur fine...hhahahaha thats why my enzymes were elevated...cause Im.....fine??!! lol Im still waiting to get some follow ups on all this so Im leaving in a bit of fear from it all. I really wanna push to get better and and recondition myself but my heart says NO! Its so frustrating, I think I deal better with syncope than cardiac issues, especially since syncope isnt every single second of the day and night....ugh I mean atleast I get a little nap outta passing out (trying to keep my sense of humor =p) I have suspected mcas, but I also have wondered about an autoimmune issue maybe aggravating these issues. I have so many symptoms resembling so many autoimmune diseases...things that go outside the realm of POTS.. There is def. something causing this, I can literally feel it. I wonder and question what the doctor strue defintion of "is harmless"....nice way of saying...we are clueless but your still breathing sooo...u must be fine. "Neuro-cardiac perfect storm" Katybug...love it....I might coin this phrase on occassion when people ask me "whats wrong?" for the millionth time in a day

yes vision issues with floaters were just one of the many initial symptoms I had. Not sure why??!!

I was just reading about Simon. So sad to hear he lost his fight.,especially so young. He was truly a remarkable, courageous person, and I hope everyone will keep his spirit alive with his story and spirit. Rip and prayers of strength for his family and friends

diamond, gla dto hear gastrocrom is helping, thats encouraging, sorry it makes ya nauseated though, its always something. I also find it interesting your pvc's dont increase when your hr stays down, this is something that bothers me greatly....def. worth talking to a doctor about. THx for sharing Kelly, thx, i think i needed to hear that. Im always so worried about meds and dosing and reactions. I increased my zantac today, we shall see...atleast I wont have any heartburn lol Katy, Geeshh...so basically this is going to be a tidious investigation...I really do need to try to pay even more attention to what im eating. Its an overwhelming task to get started when youve never really thought twice about what ya eat.... Thx =)

Hi Bebe, I just posted my personal rant on here with emotional stress and ...stuff lol U sound like you have a similiar personality to me. Deal with an issue before it becomes a problem. Be straightforward and and you'll never have to watch your back. I always have to beat an issue till there is no life left in it...but its all with good intentions. Its to leave no seed of possible problems to grow. Im sorry your having this issue, I agree with Ruby, sadly you need to think of yourself and try to let go....difficult, but Im learning to spend "my spoons" wisely =) again easier said than done. If you cant find yourself to block them...then maybe write a letter explaining you dont want to lose them but you care so much that the stress of seeing these things is making your condition flare up...make them decide. Good luck and hang in there, family is hard - sarah

Ok I think I am having a nervous breakdown. I havent dealtwith being sick all that well. I have alot fear and the first several months I went numb, almost childlike in fear. I just wanted to cry but was too scared to. Lately with some comforting words and honestly just good old fashioned time to heal me I thought I wa sdealing a bit better. I allowed myself to grieve and be angry and get through the emotions of everything. That being said, I have a complicated relationship, Im not gonna say a lot on here because its a public forum, but my fiance is a veteran and fair to say we have had ALOT of trials and tribulations with his recovery from deployments. Lately I have been trying to push myself, but after I need calm. I have to vegg and escape for a bit to calm my heart and nerves down. I ahave been getting a lot of guilt trips for this. For playing a game on my phone, or reading a book, or not being talkative (which is nothing new since Ive been sick I am a lot quieter) and for BEING ON THIS FORUM, which isnt really that often and if it is it is a short period of time, and even if it was...I need an outlet, i mean I dont go anywhere or do anything these days. Ive been woken up 3 days in row with fights. Mornings are my worst time with my nerves, because its a bit depressing waking up to Pots ...again. So when I wake I take about a half an hour before I can even talk to anyone, so you can imagine waking to a attempted fight is breathtaking for me. This evening marked fight attempt number three for today, and I finnally had it, I snapped and am not proud to say went a bit crazy...dont worry I only threw a teddy bear and lasted literally 20 seconds....lol but all the same the emotions that welled up caused my heart to go CRAZY, and I instantly retreated into the bathroom to calm and collect myself. I felt syncope come on and my heart was extremely irregular which sent me into panic and fear....etc....so avoidable, but there is only so many emotions u can bottle before u blow your top and I had to let off a little steam. I dont know what to do, I cant leave, I cant fight, I cant sleep.... Normally I could handle these emotional ups and downs and be just fine and work them out rationally. But I feel emotionally traumatized and this constant need to just push him away so I dont get riled up again. We are both under a lot of stress, Im not bringing in a paycheck now, he is disabled and Im not getting better. Ive talked to him about everything I feel, he knows my nervous system is sensitive to this kind of events. He has seen videos with me and been to doctors and I have literally beat a ton of info into his head so he understands...but he doesnt seem to care now. and now Im getting very bitter, like how dare you pick on me while im sick. I can handle a calm discussion but he just seems to escalate and pick at me. He has told me his side of just being stressed and worried about me....and the kicker he says he is jealous!!! OF WHAT!!...he thinks Ill find someone else??...because I never leave the house and am disabled essentially, that screams "hey boys, taking applications" really???? <<<BIG SIGH>>> ridiculosly childesh and ususally I could handle this and reassure him but I just dont have the energy to cater when Im so sick all the time. I just needed to vent, I am just on the edge here and feel like my business, my health, my hobbies, my friends, and now relationship are tanking...and a girl cant even have a good cry with a glass of WINE cause it will make my bp too low...SO NO ALCOHOL EITHER...GASP lol j/k I wonder if this normal relationship stuff dealing with baggage or if one of us is crazy Of course its not meee.....<nervous laughter> THX for reading, I just needed to get it off my chest before I hurt my teddy bear again, poor innocent teddy bear ..ugh Im so ashamed lol...

That is so wonderful!!! Congrats and have fun writing your article!! Who knows how many others you are gonna help through this!! =)))

ok so through all of this I have many , many symptoms like all of you guys some wax and wane or just simply take turns driving me nuts. However the most concerning issues I have are my cardiac symptoms. They are the most debilitating for me and unnerving. I can even struggle through 70/40 bp if I had too but this irregular heart thumping whenever I show any emotion or move faster than than a turtle are really driving me batty and between the tachy, pvc's and these throbbing irregular beats I get no reprieve. I was wondering if cardiac symptoms were something that waxes and wanes for you guys or is it a steady issue for you. I know I may be just getting discouraged again and worring but just walking from one room to another and picking up laundry started these heartbeats and I then retreated to the couch. Could this be deconditioning? Im certainly not active and get so winded just cooking dinner Im exhausted. However I had these symptoms from day one when I was active.....<sigh> just so frustrated and am wanting to get well so bad....=(

I have heard good personal accounts in reference to Dr. Chemail. I have an appointment scheduled for him, however he is extremely busy and when I made my appointment a month ago he was booked 6 months out, so if your even considering him make the appointment asap, you can always cancel later if you find someone else. Good luck =)

I geuss Ill start with some in depth allery testing and then try not to drive myself crazy looking for triggers. It in a wierd way makes me feel better that I may not know some of them. I get a little manic, scared to eat anything cause of how Ill feel after. I can eat something one day and be fine and then the next it makes me terriably ill. I was confused to say the least. I live in hampton roads Va, which there is a local dermatitis and fungal thing called the hampton roads crud...lol medically speaking of course. Alot of people have allergies and skin issues that some doctors chalk it up to. Weird, Ill have to look into it a bit more. Thank u guys for your help, I learn so much more from you guys than I do from hours trying to research it elsewhere. Im gonna tweak some of my meds and research some local doctors...thanks again =))

hmm CM, well that makes sense. I do have constant gi issues....Colonoscopy was benign so the doc at the hospital said its either ibs or a side effect of pots...deal with it. I have really random malabsorbtion issues. All my vitamins are fine...b's etc except pottassium and my cholesterol is extremely low. (has been for years and years)..so much my doctor said eat bacon, cheese and other high cholesterol foods, good and bad everyday...and then I laughed and said well if I could do that I wouldnt have lost 35 lbs in 3 months sir !!!! I am always feeling dehydrated as well. EVen on ivs, the nurse said my urine looked concentrated, this was after 5 days in and atleast 7 bags of fluids and a liquid diet, but I did feel better. lol Now I drink and drink before bed trying to prevent the morning yuckys and to no avail I am still dehyrated by the time I get up.

Hi guys, thx for your responses, Christy, so sorry its not helping yet with your son, but from others I geuss it just takes time. I tryed singulair years ago and my doc took me off cause it was causing more freqeunt runs of pvcs, which is a shame cause it was great for allergies and asthma. Im glad singulair is helping him even if its only a little bit, thats omething. Hang in there and good energy to your son Kelly, so sorry ur having a bad day, hope ur up an about soon =( I was on zyrtec but I thnk it was causin some added tachy so I cut it out a few weeks ago and stuck with just the claritan. Was on it for years though and it was great till pots hit me. Ive heard of usuing aspirin but my doctor years ago told me not to take it causes tachy and itchy allergic symptoms in me. Im always nervous to take too many antihistimines but maybe I need to up my dose a bit. My doctor said I could but I dont always listen to him lol I tend to listen to you guys a bit more through experiences...lol I just bought a new bottle of zantac so Ill stick it out for a bit longer and try upping my claritan. So I am undertsanding correctly, it is ok to take benedryl and claritan even at a higher dose together??? This is good to know...sometimes I just dont have the right questions for my doctor...=P Feel better soon =)) Hi Bren, well I geuss your doctor called it and I have to be patient...blahh lol Im waiting on some insurance to kick in and Im going to inquire about gastrocom with a specialist but till then Im trying nasalcrom and it actually flares my allergies everytime I use it. Geuss thats normal though according to the side effects. Thanks for response I feel alittl ebetter knowing theres stil hope I just gotta....wait =P Take care Katybug, like you Ihave aweful allergies. My job exposed me to almost everything I am allergic to (owned a cleaning company yuck) so Its hard to differentiate all these symptoms. It sounds like you have a smart doctor. Mine, when I asked him if antihistimines could help pots or a cause of it....said absolutely no thats a placebo effect in your head.. lol so patiently I wait for my specialist and try to figure it out on my own...gahhh What kinda of doctor do you see for mcas/mcad...I have a autonaumic neurologist appointment in June, but till then I thought Id see someone about mcas and get some tests done while Im waiting.....an allergist?? and if you guys dont mind...one more qeustion lol promise last one what seems to be your triggers? Im trying to find some of mine but other than obvious ones (food) I dont know where to start??? or do you even have triggers?? Thx so much ladies...{{hugs}}

eek this is hard to say, I havent tried any of these for financial reasons, however If I could I think chiropracter or massage therapy to help improve circulation and relieve pain. Its hard to say though cause we are all so vastly different. I dont think any would really relieve core symptoms though for me???

So ive been on zantac 75mgs before breakfast and dinner for 3 weeks, claritan forever lol and added nasalcrom 2 weeks ago. I feel no improvement yet. Ive also cut out artifical sweetners and alot of carbs. Am i being impatient or should i be having a slight benefit by now, isee absoluely none =( Any suggestions on other combos that you have tried or do i just need to give it more time? And i see alot of u take benedryl, is this is combonation with another antihistimine.

Maybe someone on here lives local and can give u a personal review. There seems to be quite a few doctors specializing autonaumic dysfunction in NY. I dont have any experience or knowledge personally however i would suggest u dont limit urself based upon reviews. Just pick one make appointment and if ur gut says no pick another. There is only one doctor here in my area, and hes has had some rough reviews however i believe it was cause he has a not so cuddly bed side manner and have heard he is very good at what he does. Im waiting 6 months for a first avail. Appointment so we shall see lol...... Isnt there a mayo clinic in nY and i believe a dysautonmia center linked with the presbyterian hospital, sounds like a good place to start maybe. Good luck. Also look for local support groups (some are on facebook) and u can get a lot of local feedback that way..=)

Ps. apple cider vinegar helps me sooooo much with nausea. Ive tryed all the prescription stuff, and dont care for the side effects. It is the only thing that has helped me put some weight back =) I use braggs....2 tsp in an eight oz. glass of water with a bit of honey and throw it back., not exactly a margarita but .... it does the trick for me. =)

yes and yes as well. There just seems to be no end to number of symptoms. I have horriable left arm, shoulder and chest pain. It was so bad I really thought I was having a heart attack. Add in elevated cardiac enzymes, and the bp of 70/40 with a resting heart rate of 140 and I got admitted to the hospital for 2 weeks. This is a symptom that comes and goes for me. I had at that time already lost 35 lbs and was very malnourished from not being able to eat. No desire to and absolute horrific nausea and other gi issues. My weight loss occurred in less than 3 months time. UGH...so it is unforuantly normal to have weight loss, weight gain and everything in between. I also have been getting horriable leg pain lately, all my labs are normal, cant figure it out....grrrrr gotta love pots...hahahaha

Hey....i have the same qeustion. Fluids and salts dont seem to be making much, if any difference for me. I just assumed it meant i am probaly not suffering from hypovalemia, but then it raises the question...why does iv saline make me feel better ?!

Chiari malformation Mitral valve prolapse Geesh u guys are good..i cant think of anymore with my foggy little brain. ++blink++

Hi Archilles, I wouldn;t live in a state of fear worrying if its gonna get worse. Yea its a possiability, however nothing in this world is predictable. I seem to have had this since birth or shortly after. By the time I was in kindergaten I was passing out everyday like clockwork. It eased off for several years while I was a teenager. This proves noone is the same. You'll read a lot that it is sopposed to worsen for teenagers going through rapid growth spurts and for me it got better so everyone is different and unique. It hit me again hard and much more problematic this past june, right before my 31st birthday. I was healthy and in shape and had a rigourous job so I dont think its connected for the most part to anything I did. I think what ever is causing yours and mine will determine the outcome, or there are those that have idiopathic Pots that improve quite well without a cause being found. Myself, I have stay positive, which is easier said than done, but honeslty because Pots effects or is generated by the same nervous system that effects anxiety, I feel that if you dwell on the unpredictable and add to your anxiety it just makes things worse. (easier said than done, right ) I have a hard time with this and its literally a battle but I wake up everyday and forcefully say, I refuse to lets POts run my thoughts today and it helps. I have found a few things to be helping, maybe not consistantly but a little here and there. Monitoring what I eat and drink. Keeping a journal of intake and symptoms to see if anything makes me worse or better. I take a few meds which are in my signature that help a little. ( I suspect I have mast cell issues after keeping a journal and some wonderful advice from othersa on here ) As far as exercise, I cant really do that yet but any movement helps, after I push through the inital dizzies and tachycardia I can keep moving for a while till I get flushed. Then I rest and do it again. Being imobile was my worst mistake. I have been bedridden on and off and evrytime I am it makes it harder to get up again. I feel if I hadnt been hospitalized and made to lay down for 2 weeks I would be better off now. Im sorry I dont have any words of wisdom here since I am still figuring this out myself but hang in there, its trial and error for all of us. Stay positive and take care - sarah

Same here, although I feel better than when Im standing...I think this is the part of Pots the doctors are clueless about and just reminds me there is an underlying cause.

Wishing you strenght and comfort Pumpkin. I hope time speeds by quickly so this can all be in the past!! You will be in my prayers tonight!!