My Life Story

[fc3schick87]

well it started when i was about 8, i started getting bad stomach cramps, all the way up untill i was 15 i had on and off horrible stomach pains, every time i would go out to a restraunt i knew i would be spending some embaracing time in the restroom shortly after consuming part of my meal.

i was very active, living in california i would be going to theme parks weekly, roller blading daily and just pretty darn active. i did play soccer and i could never complete more then half of a game, i would always feel like i couldnt catch my breath and that my heart would race if i were to play more then one quarter at a time. one quarter in. one quarter out to rest. and then back in the game.

it wasnt untill i was about 16 when i moved to san antonio tx where all my symptoms started to fall upon me. first it was dissy spells followed by almost fienting, stomach started getting worse. i was seeing a pediatric gastro that said "if theres nothing solid in your stomach to cramp upon then you wont get pain" so he loaded me up on merolax, he said "i want your stool to be like apple sauce" of course he never gave me instructions to maintain hydration... and needless to say i got alot more sick from this.... it wound up overly dehydrating me and thats when the can of worms was opened up. (dont worry that dr got sued eventually and went out of practice)

i started not even being able to go to school. i would get blood pressure crashes in the middle of class followed by adrenilen attacks, where i hid in the bathroom with the horrible pain in my stomach. i would daily seek the school nurse who eventually caught my blood pressure at 40/70!!!! she said i wasnt alowed back at school because i was at risk of passing out.

i started doing home school where i couldnt barly complete one session... the teacher started doubting if i really was faking it or it was real bbecause it was a simple task to just sit there right?

school was hard for me as i was diagnosed with ADHD, i constantly have issues concentrating and being able to think threw complications with numbers or learn new things. i think this has something to do with what i have also... on a side note!

i got tossed between doctors. test after test. blood work after blood work, upper GI lower GI, medication after sickening medication. i was once even thought to be anorexic!?

migrains soon joined the party. i would get numb hands numb face, numb inside of my throat and blind spots with in my vision called auras. for the migrains i was put on lexipro which actually did help. but soon i got usto the medication and it stopped helping... as a bandaid soon would any way.

cat scans. mri of my brain. EKG eeg, even an epilepsy test which left me feeling quite sick..

it wasnt untill i found an amazing chartiologest that figured things out. i think he knew what was wrong from the moment he heard about me....

he told me that all i had to do was drink gatorade, but not yet, after the testing the day after, he wanted me to drink gatorade untill my urin was clear.

i had a tilt table test, a blood volume test and was kept for a 6 hour IV drip to hydrate me.

between this time and when i was able to attend school and work was a blur for me. but i was able to, no more panic attacks and little problems on day to day basis. i work at pizza hut as a driver, im able to sit, stay moving, and rest when i need it. works out perfect and they understand my condition. when first working for htem i had alot of issues, but now only seemingly have issues when i have allergies.

my migrains were pretty bad threw the whole electrolyte imballance fight. i ruled out so many factors. i changed my birth controle to the shot. i eliminated chocolate, coffee (which i could never drink any way) sodas and alot of food with preservatives. after ruling all this out i found all to be causes for my migrains, one being the nuva ring birth controle i was on, to much swing in hormone (good birth control btw) and because i switched to the shot i think i limited the amount of migrains i do get. now i am left with the sinus pressure triggers migraines, which i have just recently figured out!

i also drink fruit juice, no not the kind you buy in a clear bottle but the actual real fruit juice in the refrigerated section. i keep to bolt house blueberry, and odwalla super food (the green one) and i notice if i am feeling icky, and drink this stuff it really helps add micronutrience into my body and i feel alot better.

i do still have issues day to day. im tired every day needing a nap before work. i work only 3-5 hour shifts and still get worn out. still seeking answers for the shortness of breath i get, and waking up with racing heart and feeling sick to my stomach sometimes, i still battle my IBS from time to time, which btw i take charcoal pills to remove the bacteria from my stomach that cause the discomfort!!! works like a charm btw. works for months at a time!!!

there is so much more, so much i left out about my journey threw this hellish illness.

but i can tell you i dont take any medication, what i rely on is staying hydrated, staying healthy with many nutrient threw the day and making sure i dont over do it, and rest when i can. its a long road to leveling out electrolytes. it took me several years.

i hope what i have shared helps all of you. i am only 23 and i have been fighting with this for a while too. but i am finally getting answers i seek.

[fc3schick87]

one thing i am seeking an answer for is why am i so tired all the time. what can i do to not be so tired all the time. caffeine makes me sick so i cant use that. eating food usually adds to the tiredness.

i just woke up about an hour ago yet i feel like going back to sleep for a nap already..

[potsgirl]

Welcome to the forum! You've come to a great place to seek information, and get support. I look forward to seeing your posts and getting to know you better!

Cheers,

Jana

[lieze]

Thanks so much for sharing your story.

I'm going to try the Gatorade.

lieze

[erickamcc0523]

Welcome to the boards! I am also 23, about to be 24 in May. I'm sorry you have had such difficulty in being diagnosed, and that you have had to deal with incompetent doctors. Many of us here have dealt with at least one of them.

Like you, I was told that all of my stomach pain and nausea was due to stress... basically they were trying to say that I was crazy and I should leave them alone. But I persisted in seeing different doctors, and eventually my gallbladder was taken out. While I still have some stomach pain and nausea, it is much lessened now. I was put in the hospital a few times and was put on IV morphine and phenergan, and that hardly helped. By any chance, has your gallbladder been checked out? It wouldn't hurt. I've noticed that a fairly high percentage of us here have had gallbladder issues. I'm not sure of a connection between the POTS and gallbladder disease, but I do believe that it is more than just coincidence that so many of us here have gallbladder problems.

I also have trouble with fatigue, and well, I'm barely awake right now. I'm always barely awake. For me, some caffeine helps (perhaps a cup or so a day, but no more, as it start making me more symptomatic), not only with the fatigue, but with the rest of the POTS symptoms, especially with the blood pooling in my legs when I stand up. I suspect it does since it works as a vasoconstricter, and that helps the blood push back up towards my heart easier. However, it isn't a complete fix. I have joint hypermobility syndrome (it's probably Ehlers-Danlos syndrome... I've just not been officially diagnosed yet) and a collagen deficiency, which makes my blood vessels really lax. Also, I eat small and frequent meals, for two reasons. The first is that after one eats, blood has to flow to the stomach to help with digestion, leaving less blood for the rest of the body to use. Also, the POTS affects the contractions in my esophagus and intestines (it's an autonomic function, too... my whole autonomic system is whacked out, apparently), and everything tends to just sit there, later causing heartburn and other stomach issues. I am on a beta blocker, which does help some with the presyncope and it does keep my heart rate down somewhat (for the most part anyway), but it has increased my fatigue. I'm with you, I wish there was more to help with the fatigue.

Also, if you get tired of drinking Gatoraid, you could maybe use electrolyte tablets. The ones I have reminds me of the Airborne immune tablets; both fizz and have a citrus flavor. When I'm starting to feel really weak, I pop a few of them and drink at least 16 oz of water right then, and it'll pep me up pretty quickly. I can't remember the brand I use, but I know others use Nuun electrolyte tablets. Also, sometimes I'll use runner's gel, which is a 1-2 oz packet of this electrolyte gel with some carbs in them. I don't know about you, but I don't like drinking Gatoraid all of the time, and I'm glad there are other options of things that work. I just wanted to pass them along.

Anyways, I'm both glad and sorry (that you're sick enough to seek support and help) that you're here. In any case, welcome to the family!

Ericka

[fc3schick87]

Also, the POTS affects the contractions in my esophagus and intestines

wow now that you mention it. sometimes it feels like there is a lump in my throat, usually with the onset of some other symptoms like racing heart and shortness of breath... thats so interesting i always thought i just swallowed something wrong.

thanks for the info about the sports related electrolyte stuff. im going to try that out. fortunately right now i am balanced with electrolytes for the first time in about 7 years, yesterday i tried Gatorade and it gave me a headache! guess it was just to much for my system. to much of a good thing is not to good

i still hydrate with water and eat as healthy as possible. and i still swear by electrolytes. so every one drink up and keep hydrated

[Noreen]

Thanks for sharing the things that help you. I might give the Odwalla a try next bad spell.

For fatigue, I take 10 mg. Adderall. Really can't function without it.

Noreen

[fc3schick87]

Thanks for sharing the things that help you. I might give the Odwalla a try next bad spell.

For fatigue, I take 10 mg. Adderall. Really can't function without it.

Noreen

omg really?! that would even help with my concentration omg thank you for letting me know that. i'll recomend it to my doctor. worst it can do is give me headaches, as i remember from when i was younger and usto take it

<3 thank you!

odwalla, dont be intimidated by the green coloration of the super food drink. it taste like banana and apple and mango. no hint of green flavor hehe... its best for you so just go for it!

also check out bolt house farm drinks. read the back of them for the nutritional information they have alot of goodies in them too like riboflavin, and whats best is they taste good, whats bad is its slightly expensive. but worth it

[Noreen]

de nada

Someone on the forum had mentioned a protocol used by Dr. Grubb in which they took Adderall in the morning, Midodrine at noon and then every 3 hours. I had already been prescribed these meds so I ran that by my cardio and was okayed.

Now that I think about it the change in the way I took the meds, not just the increase in the volume of water I consume daily, probably is responsible for the improvement in how I feel. Where would we be without each other?!

I have a 14 yr old son so couldn't do the expensive juices. You probably know, at that age, they think a whole pizza is a snack

take care

Noreen