k&ajsmom

Implosion lol well obviously none of those people have pots. My max heartrate should be around 190 and I hit 180 sometimes just showering so I think its safe to say I overshoot my max even without exercise sometimes. Like you I wish I could take that bet, it wouldnt take but 3 minutes for me to have a $1000 in the bank lol

AWESOME!! This sounds yummy and easy lol Gonna try this soon! Thx, Sarah

oh my, I am quite surprised to see all of you have this going on! I was just saying t my fiance right after I got doing brushing my mess of hair, that it seems to be falling out at alarming rates. I have to clean my hairbrush after every use. Maybe its the florinef, that seems to be the only one I have in common that would possiably do this, unless its a nutrional defiency. My b vits are all normal but I havent had my D checked. Fortuantly I have thick hair but I do notice a difference when I put iit in a pony tail. I ve also noticed its extremely dry, no matter how much hair serum I put on.

So sorry you have to deal with injury on top of everything else. Im not really sure what advice to give here. I always have warning signs and voluntarily will dive for the ground or put my head between my legs for a bit till I can attempt being upright again. The only thing I can say if your not noticing warnings, as I was adviced, keep a journal. Maybe you will find a small sympton or warning your are looking over. Sometimes I think we are so tough and aclamate (sp lol) to our illness that we tend to unintentionally ignore some things. So good days and especially bad write everything down, how u feel, what u eat, what ur doing and how u feel before during and after. It sounds tedious and time consuming but it certainly would be worth it if you could avoid another concussion. Maybe u wont find some warning signs but maybe you will finsdcertain activieties that trigger it. and you will know to change your routines to accomadate this..... Good luck and be careful!!!

Well, i never expected so many wonderful responses, this is great. I literally didnt know what to drink today so just made some delicous salt water with some juice in it....ick Really gotta get that recipe tweaked lol I think I def have a problem with the dye, however I am still feeling quite crumby today. I got up and got very sick and had to sleep it off for a few hours. Felt like my body just would not function properly. Had d's and chills, and tachy low bp/high bp(for me anyways) and just could not stay awake even after sleeping 9 hours last night. I think there may be a sucrolose issue. I know I have mentioned on here before that my sister passed away form hemolytic urheumic (sp) syndrome form probable coli poisoning, yet it was never confirmed. Upon her autospy she had massive intestinal damage. My brother and I had similiar symptoms and were on a restricted diet. (my poor mother, I cant imagine) We reframed from lactose, sucrolose, and limited gluten. I cant remember any specifics on how this helped us but I know by the time we were around 10/12 we were back on normal diets and seemed to do ok despite some abnormalies here and there. I think I may need to go that route again, although i find it overwhelming to attempt it on alimited budget with kids of my own to feed. I also am a uncreative, untalented cook who literally can burn anything.....even the pot I boil water in lol but hey I gotta change something or suffer quitely =) and really it would be good for my kids to eat better since they are having some issues as well. Thank u guys for all the suggestions, I havent gotten out of the house much and honestly just the thought of walking around looking for something to drink is unmotivating.. I have never liked water and it runs right through me as well, but now I have some good things to try out. These all sounds comparable to the price of gatorade so I might try them all for osme variety till I find one thats a fav =)) ANything has to better than gatorade, I cant believe such a positive stigma is around drinking that stuff. Thx again, u guys are awesome, I have learned so much from this forum!!

Thx Amy, I was trying to search for the name of those tablets but find them. There is a new whole foods near my home I see if they have them =))

G2 is the lower sugar alternative to standard gatorade. It has approx. 17.5g of sugar by way sucrose and sucrolose per a 32 oz bottle. So its better, but still not good and why I water it down usually. However, I did a bit of research on all the ingredients in G2 and gatorade and every single thing is concerning besides water lol I am almost positive it is the dye in this smurf juice that got me. One thing I was shocked about is apparently blue #1 and red 40 are 2 highly suspected causes of some allergic responses as well blue #1 can cross your blood brain barrier, so does this mean not only is your tongue blue but your brain is too???? what?? lol Seriously though ,it is concerning that I have been drinking something so ignorently without knowing what was in it. I grew up drinking gatorade all the time and I have literally had days where it was the only nourishment I could manage. I will never drink another one though, I will certainly be making my own. And after drinking water all day and some water downed juice I am starting to feel a bit more normal potsy instead of manic potsy lol I wonder how many symptomatic days I have done this to myself. Geesh one trigger discovered, who knows how many more to go =)

Ive had basic rast skin testing several years ago. I dont remember many foods being tested I think only the basics, peanuts, eggs etc..the 2 that turned up were eggs and tea, until recently I was still consumeng both because I didnt get violently ill right after consuming them so I assumed I was fine...lol ignorence is bliss ....other than that I think I was tested for the basic stuff, mold, pollen, grass etc...and was allergic to almost everything...but I am pretty sure things like dyes were noyt on there. I am waiting for my insurance to come through hopefully anyday,then Im going to start making appointments. I have a specialist appointment for autonaumic dysfunction in June, so I am trying to rule out everything possiable before hand so I can make his job a little easier and save me some trial and error with him.

thx guys, I am gonna experiment with the "homemade gatorade" mixture. I agree gatorade is heavy, almost syrupy ...yuck..., so I switched to the g2 from regular awhile back and I try to dilute every bottle half with h2o so its not so heavy but enough to get me balanced. (plus my glucose has been high lately) However this bottle I drank straight cause I was out when I opened it and just didnt think about it. Wont do that again!! lol Im just learning about sensitivities and allergies. I have always seen it black or white , your allergic or your not. Now I know better. Probaly why I have been so sick all my life, although my mom had us all on restricted diets when we were young, as soon as we got older and aymptomatic we went back on all the stuff we had been restricted from and never gave it another thought. I geuss I need to face the fact my diet may be a big factor in all of this. It just amazes me how much I am seeing that is in our food that is so hazardous, its overwhelming knowing where to start.....but i geuss Ill start by eliminating gatorade lol

Amy, Thanks for your feedback, when I first got sick I thought for sure I had some kind of gi bacteria or parasite along the lines of fungal dysbiosis. But the doctors assure me I don not after many studies and an colonoscopy I was deemed "healthy" So I dont know?? However vinegar does help me when I get nauseated so I htink something is out of whack. I didnt even know they made gluten free oatmeal, Ill have to try it. It doesnt seem to matter what I eat though, it just seems everything is my enemy at one momnet or another.=( but cutting gluten is probaly a good way to go regardless being that its hard to digest. Frugal, I think u may have hit the nail on the head. I highly suspect I have mcas and/or similiar issues. It certainly feels like a whole body experience when I get "sicK". I have added zantac 2xs a day and today started nasalcrom and already on antihistimines. I did not know however analphlaxis could be occuring. I always associated it with the steriotypical anaphylaxis one has from a peanut allergy or shellfish with the swelling of the throat etc... This is interesting. I just posted another topic today in regards to a reaction I think I had to gatorade, of all things. The immodium def. helps but not enough for me to stay out of the bathroom very long =( Do u find benedryl helps differently than another antihistimines?? I havent taken it for years cause it use to make me wired and jittery but Id be willing to give a try if its different than the claritan Im already on and may help. Thx so much everyone =))

The last couple of days I have been doing ok, not great but not as bad as usual. I even accompanied my fiance to do grocery shopping yesterday. (Mainly cause Im tired of eating hamburgers and chips , somebody has to get some veggies in this house lol) I have been avoiding Blue gatorade for a while cause basically I dont care for it, however thats all they had in the G2 when we went so, I got a couple. Anyways I noticed as I drank it last night and as I woke up and continued to drink it, I became very symptomatic. Very high heartrate,(160's standing after doing nothing) breathless, dizzy, bouncing blood pressure (110/84 one minute and 80/48 the next) etc.At first I assumed it was a mast cell issue, but then why did I get just POtsy and not sneezy and allergic or have stomach upset like I usually experience on a daily basis? There was nothing else I consumed or did diferently besides start nasalcrom today,at which time I already felt yucky. I dont wanna stop drinking G2 cause its really all I drink, Im allergic to tea , juice is too harsh and water dilutes my system too much so what else could I drink?? I noticed if blue dye is a culprit, it is in many of the flavors not just the blue ones. Has anyone had Pots symptoms flare from gatorade? or more specifically food dyes??? Or is this solely a probable mast cell issue?? or merely a coincedence. Sorry I am still so new to all this, just trying to make since in my jumbled up brain and was curious about other experiences......=) Thx

most somedays* ****see i messed it up already lol

There are several classifications or presipatating causes of svt, so it would really depend on what exactly is going with yout heart. That being said, it is usually not life threatening, and the biggest concern , usually is demage done after extended periods of svt. By extended I mean more than a few hours of days or even years for some people so dont worry yourself too much. (easier said than done, if only I could take my own advice lol) Generally speaking from my experience svt runs in episodes and is not usually constant. I get runs of it as well as a fib occassionally and take no meds becaue it is not frequent enough for me to warrant the side effects since I suffer with chronic hypotension. Some people do have beta blockers to help as well as some other meds. Again though, it all depends on what is going with you in particular. I imagine it could be triggered by hormonal side effects, stress or sleepless nights considering POTS seems to make us so prone to these issues. I would recommend you continue to follow up with a cardiologist and have proper tests done to make sure your heart is structurally sound ie; stress test, echocardiogram etc..or whatever your doctor reccommends. Until then be assured you are not alone and you are doing everything right by getting a halter monitor and being on top of your health. I dont drink caffiene and have recently cutt out some sugar and carbs that seem to aggravate these episodes. Hopefully someone else can give you a better understanding, since I am a bit uneducated on this and can only really speak from experience. And as far as english being your second language and being embarassed that you made an error.....its my first language and I cant seem to get it right most somedays lol =) Good luck and hang in there!!!

I haven't been diagnosed yet but I really think I have mast cells isues. I would tend to think it depends on the person and their exposure to triggers. I have had rast testing and have multiple allergies but I hardly ever get a cold or flu, but when I do its almost better than the everyday illness I get. I am constantly ill with sinus attacks, sneezing, swelling, swollen glands, nausea, headache with jaw pain, eye pain, the yucky d's , alternating fever and low temp and sugar cravings...and now pots. I was sick with strep alot as a child tehn had my tonsils out and never had it again but even then I remember strep not being as bad as the "allergy attacks" that last days. I just started on Nasal Crom today and zantac 2 weeks ago. I was already on antihitimines to control the wheeze and allergy attacks. I started on a low low dose of zantac first. 75 mgs split in half, one before breakfast and one befroe dinner. Ive noticed it helps to take atleast half an hour to an hour before I eat. ( and p.s I have never had heartburn lol) I ran out yesterday and didnt take one before dinner and had a noticable effect from eating. Heavy heartbeats, tachy, flushed and nauseated.I got right back on it today and that feeling has eased now, so I geuss it is helping...YAY! i May increase it a bit now that I know its doing something.Im hoping the nasal crom helps too. Its over the counter so cant beat it lol Good luck with ur son, I hope u can find something that helps him soon!!

I have been getting them for atleast 7 years now and I am alive and sometimes kicking lol I get runs of them for weeks at a time or sometimes just once or twice a day, they never "feel better" but somehow u have to learn to swallow, breath and distract urself from them. The good thing for you is it could be hormonal and may subside as your hormones balance out. I got my first one runnign on a tread mill at my healthiest and by the next day I was having a hundreds or more an hour for 48 hrs. straight. I went to the hospital, panicked and they did all kinds of tests that said they were ok, they were concerned at the freqeuncy but eventually sent me home. Ive since learned to live with them, although reluctantly and sometimes manically but all the same Im living. From my knowlege, ablation is a bad idea for POTS and autonaumic issues and it has proven to make pots sypmtoms worse in some patients. My electro-cardiologist that I used to go to says the best treatment is no treatment, sometimes pvc's are telling us we need to get our bodies back in alignment, rest, eat well, and take care. Now thats easier said than done, especially with pots, but all the same atleast its not something worse. If this is only your second round with pvc's...relax...ur one of the lucky ones lol not to downplay it cause having just one stinks!! I know some people take beta-blockers if they become an everyday issue and that it can really help and much less risky than an ablation. Long story short....as long as you have been, or are being medically determined that you are ok and they are benign, try and breath properly, hydrate yourself and relax. ANd odnt freak out thinking they are not benign, it is VERY rare that they have a underlying cause that is malignant. Matter of fact, I have never talked to anyone whose had a bad outcome from pvc's.....sooooo Congrats on your baby!! U have been through a lot just focus on healing and not the "what ifs"...good luck and take of yourself not just new sweet baby. U are taking the right steps with a halter moniter and u are on top of things, so ur doing exactly what u need to be doing. Take care and rest, rest, rest, if I was closer Id come snuggle that baby for ya =)))

Right before my autonaumic issues turned into POTS I was diagnosed with endemetreosis and I have always had a lot of cysts that rupture on my ovaries that are very painful. I actually went to the gyn before anyone else because I thought the gi issues were related to my period, thats when they found the endemetreosis and more cysts, which they said it was possiable but should relent some when Im off my period, and it was unrelenting...24/7 and 7 months later it still is. I feel like I have menstraul cramps all month long...ugh I have tryed various bc in the past and always had bad reactions to them. ie; lowers bp, makes me manic, nauseated, weight gain even without eating alot, headaches increase, etc... so I just deal with it, but I've heard it help others tremendously. I am slighty more symptomatic during my period but the worst is really the week beforeand week after....so thta 3 weeks out of a month..... oh the joys of womanhood lol

In the same boat as all of you. I refuse to except POTS is it, I know, or atleast have an internal instinct that there is a cause to mine ,so I refuse to stop looking and without this forum I would be so lost. I think mcas is the best fit for me. But really this is a guess kinda based on hope and loose simialarities to others. I do know however if I exhaust all my resources and dont find an answer I may have to except it, as is and that would be hard for me .The biggest thing for me is cardiac symptoms. The other symptoms are horriable but that is the one that unnerves me the most. Of course I have a hard time swallowing that its benign since every nerve in my body is screaming run to the er, your not gonna make it this time!!!! <cue nervous laughter> I have the swelling of my veins in my hands and feet especially, its very prominant if its warm out and if I walk at all and is very uncomfortable. Sometimes it happens just sitting on the couch though??? None of the doctors Ive seen seem to care about it. Ill hang my legs in a cold shower when it happens and it helps to constrict them. I hope u can find some peace with this and a good physician. Hang in there and take care....=)

ughhhh...so sorry pumpkin, that really stinks. I hope u can try to put it out of ur mind and atleast rest during the few days. The anticipation is awful Im sure. Hang in there and try to let it go for a few hours atleast, maybe watch a good movie and vegg out and relax. =)

I dont have any advice here. Just wanted to say good luck and Im hope all goes well in ur favor. I def agree though, do what makes u comfortable and dont worry what the judge thinks. Use ur worst day as the standard in describing ur illness, cause we all know it can change in a minute. Good luck again and Ill say a little prayer of comfort while ur dealing with this.

carrie, thx for the link, gonna have to give that a more thourough read when my brain is awake. I have severe jaw pain, to the point I cant eat sometimes. I havent been able to chew gum in years, a day after my jaw will lock shut and be painful. The joints in my jaw are severely out of alignment and click when I chew. I finnally went a dentist and had xrays and exam and have severe Tmj. I never knew I was a clincher or displayed bruxism, however my dentist said with autonaumic issues sometimes we have delayed rem and adrenaline surges that contributes to the bruxism. ( figures my dentist would know more than my doctor haha) I have perfectly healthy teeth, no cavities for 16 years but my teeth just ache and even will feel loose sometimes, I was fitted for a dental split which helps considerably, however I am still paying for the $1200.00 device...yuck. If I could do it again Id pay around 50 for a decent one at the drugstore. I still get a lot of tooth and jaw pain but it def. helps. Also moist heat with some essential oils helps when my jaw swells and locks. I used to take ibuprofen for it but it didnt always help so I started using flexeril preventativly before bed which helped enormously. Cant take flexeril anymore...oh how I miss it. Good luck

wow! how awesome is that! thx for posting this, I def am gonna check this out! Im gonna need a career change since Ive been out since oct and cant see me going back, and of course that hurts my piggy bank severely so this is perfect!!!

Thx for posting this P...Ive been thinking about Pumpkin but couldnt remember exactly when the surgery was. Pumpkin, U are in my prayers and thoughts for comfort and strength. In 24 hours in will be a part of ur past and u will only be stronger. U have been very helpful and kind to all my questions and confusion since I joined this forum and I can only hope this experience will alleviate some, if not all of ur symptoms with having a stronger healthy heart. Please keep us posted AFTER u have rested and are feeling better. Much love and hugs, Sarah

Never apologize in regards to spelling, I am the worst when Im sick..just dont have the motivation to edit or spellcheck myself lol ironic since I excelled in english comp and lit. in college <those were the days> Eds is something I only looked into briefly online because I dont think I have many traits, if any. I dont have thin skin, and I am stiff and inflexiable instead of hypermobile. I also have mild pooling but not severe unless im really hot. I do however have some joint issues, nothing truly siginificant though. My neck is very affected with sublexation and arthritis and my hip can be slipped out of socket very easily. My kids say I can never sneak up on them cause I click so loud. I bruise easily but only on my legs. SO Its something I will def. rule out when I get a doctor that has a clue lol but Im not sure if its tangible for me...but I am really only geussing here. It would be nice to atleast have a doctor rule it out. Im really getting tired of my current doc not caring about finding a "reason" for pots. Its gonna be a long 6 months till my specialists appointment. Donnatal I think is similiar to Lomotil then, with dirivatives of bella donna and a mixture with atropine. These meds tend to crash my system too much. I feel like I am constantly overstimulated yet I cant handle anything that calms me....figures lol

Good question, I wish I would have thought of it. I have an appointment in June with Dr. Chemali and he is a neurologist specializing in autonaumic dysfunction. I just assumed he would be informed on mcas...maybe I need to look into that before I put all my eggs into that basket. Im pretty sure thats whats going on with me too and my pcp has never heard of it relating to pots. Thx for posting this, u may have saved me some time. and Im sorry ur haivng to go through a doctor change. It can be frustrating but it can also be hopeful so good luck in ur search =)

Hi Ruby, Welcome to the forum, and look forward to sharing with u!! -Sarah