jkoconne

Thank you all for your kind words! My final went....okay i hope. I didnt leave anything blank but i dont know if I did well enough to get a passing grade If not, I will bring in documentation and aruge with him. My documentation through the disabilty resoucre center has taken forever...and that how I could have MAYBE changed the time/date. So increabily frustrating! My classmates laughed when they saw my mom drop me off at a college final. Then i said I was sick and couldnt make it on my own. One of the kids goes "your always sick" me: "ya, i have a chronic illness" Him: What? Me: do you know what your autonomic system is? Him: Ya, just learned about it in biology. Me: Well mine doesnt work correctly. Him: Oh wow, your a trooper! I left campus and went right to the ER. Turns out I have to flu Im doing much better now. The fulids and antineausa medication helped sooo very much! But now my body is still recovering. Thank you again for the support when I was having a down day. Truely means a lot to me

I was happy to finally say I took 4 classes this semester. Well finals came and i expected a flare of symptoms. It happened every finals weeks due to stress but i thought I was preparing this time. And my flare up was minimal. Well, last night I started getting a sore throat. Woke up in the night with a fever and serious tachy. I kept changing positions, waiting for it to go down and then back to sleep...then repeat every 15-30mins. I have a calc finaly tonight at 7pm, My teacher and the department said no exceptions for missing the final. Did i mention its 25% of my grade...ugh! So ive been in bed all day trying to keep my hr under 130 and my head to get better from this terrible fog. I usually drink a min of 90oz a day but today ive only got down 18 due to my throat and stomach pain/neausa. Im thinking it could be the flu but i dont know for sure.. So off to the ER after the final to check out my chest pain and get fluids through IV Oh boy do i hate the hospital...! But want to keep myself from an even worse set back. Sorry for the negative attitude but today is extra crummy..

I had minor symptoms (Gi and some pooling in legs after warm showers/baths). After I had a sever a traumatic reaction to Cymbalta I got a whole new bundel of symptoms and then ones I had became much worse

I've been gluten free for 5 years now! It took about 5months so see a difference but i was also cheating here and there during the first few months. Being off gluten has made things sooo much better! Gi symptoms are my biggest issue with pots and let me tell you if I eat wheat I know within minutes! I get terrible brain fog, neasua no meds control, muscle aches ect. It starts with the the brain fog where i have a hard time processing what people are saying to me and how to respond followed by blurry vision. When this starts Im symptomatic for at least 3 days..its the real pits! For new gf members my advice is stay with it! try a lot of different brands of food. It took me a few years to find all the good ones...and trust me I eat really tasty stuff. My paretns and Bf eat it when im around and they sometimes cant tell the difference. And no, they arent just being nice. They tell me when it doesnt taste good haha Feel free to message me if you need help finding good brands

Im so sorry to hear this happened I rarely get this but sometimes I have to stop and take a few deep breaths to feel "better" abou t my breathing...its hard not to get anxious in those times. Im so happy it stoped. Ill pray it doesnt happen again for you! You're so good at being strong for your girls! Im sure you're an amazing mom! Make sure to take good care of yourself too Hugs

I love listening to dance/electro music when I workout! It gives an awesome beat to keep my cardio going and uplifiting lyrics Here are some of my favs: Calvin Harris: *I need your love, Swedish House Mafia: *Dont you worry child, Greyhound (love this for my warm up) Bassnectar: Lights (ellie Goulding remix) David Guetta: Titanium, when loves takes over Kaskade: Lessons in love, Move for me *my favorites right now! My cardio flys by when im listening to these. Otherwise I feel like i cant keep going

Thanks! I think I am able to find it through a fellow potsy! I workout at a gym and they keep it nice and cold Sometimes during the summer though I dont leave the house much becasue My body gets so symptomatic from the high temp!

Hi all, Im guessing some of you have heard of Dr. Levine's exercise protocol? I have been looking into it and there seem to be so many success stories from pots patients! I finally got a response from his office but they no longer give the information out to patients. Your doctor must request the information from Dr. Levine's office. Today I called my neurologist's office and asked to have a message delivered to my doctor asking if he would be willing to request the information for me. His secretary had never heard of Dr. Levine or the workout protocol so im nervous that they will not being willing to request the information! Dr. Levine is very credible and I would love to try this protocol rather than medication. I usually have bad reactions to medication so I have already put it off for a few months while i finish the semester at ASU. But i need something to help with my symptoms. Another part of the exercise protocol is that you can't be taking medication for bp or hr..so id rather not get on medication and then have to go back off to do this program. Anyway, Im wondering if anyone has advice about taking to my doc about this? Or if they have done the exercise protocol? I see Dr. Goodman at Mayo. I'm hoping he will approve it and request the info. I go in for a Check-up/New game plan for treatment next week. Thanks

I have this happen pretty frequently. I dont know if waking up gives me tachy or the tachy is what wakes me up. when I wake up with tachy (95-120bpm), whether it be in the morning after my alarm or randomly in the night, Im also very neasous. I usually need to take my zofran and wait for my HR to go back down to at least the 90's to get back to sleep. Raising the head of my bed has helped reduced how often I wake up in the middle of the night with tachy but it hasnt helped the morning situation.

I get the same feeling. In my lower legs and all over at times. My mom remember the exact day is started (i was 5 so 16 yrs ago) and I would throw fits as a child about being so itchy i couldnt stand it and nothing would help it! Now im more use to it. My legs get itchy a few times a week at night and my whole body only a few times a month. Not sure what causes it

I definitely noticed mine has decreased! I took a year off of math and went back to the next required class, calculus. I thought it was just because it was new stuff but then i have trouble remembering easy multiplication facts and math rules. I also see a difference on days my symptoms are worse...im not sure if its due to fatigue or on days my symptoms are worse the brain flow is worse either way it makes class and finishing homework really hard. It takes so much longer then it use it! Hopefully I only have 9 days of math left to finish my college requirements.

Im so sorry to hear you're having such a rough day(s)! I get to the point that it hurts to touch my arms and legs and moving them even hurts. I feel your pain but i dont have advice on how to fix it I have to wait mine out. I hope you get reliefe soon! Sending positive thoughts your way. Hugs!

Thanks! Im thinking of doing it for piece of mind The last time i was waiting for emts i thought i was going to go unconcuois and my boyfriend couldnt remember all my allergies and diagnosis. Thanks for the advice! Hugs

Hi all, Out of all my docs only my cardiologist has recommended getting a medical alert tag/jewelry. I dont faint but i get lightheaded and have to sit back down often. On days like this i generally stay home. I dont usually go out alone except to campus for classes, otherwise im with my boyfriend, family or friends that know my condition. Im wondering if I should get a tag/jewelry just as a safety measure. How many of you wear them? Advice about the topic? Thanks!

I understnad where all of you are coming from. My mom is an awesome supporter of me and helps me the most. She is very involved, when all this started I was under 18 so she came to every doc appt with me. Now im over 18 and we learned to sets of ears at a doc appt is better than one so she comes with still. Its hard because i feel like im being a burden to her...were going on 9 years of symptoms and a lot of times I needed her to get through the simplest daily tasks. I appreciate her so much and i try to tell her and show her that often but I still feel guilty how often she gives up her own time to help me. She is also good at pushing me though. Helping me with a few things so i can do an important thing. Like helping me cook and get ready so i cam spend my energy getting to class. Its really hard trying to be independent and also needing so much help. My boyfriend trys really hard to be supportive and caring but its just not the same as my mom and family. Im only 21 and hes 22. I have to cancel plans a lot or stay in rather than go out. he seems to be okay with me having a few bad days in a row but when it hits a week or more I see it making him frustrated and upset. I understand its hard to accept and deal with but its not fair to take it out on me. It also makes keeping the intimate part of the relationship going. We're working on the situation/relationship (were going on 2 yrs) because we see a long future together but at times i feel like pots is the one things pulling us apart. Has anyone had this happen? had pots put a strain on a relationship? What did you do to help it?

Hi all, My next neurology is coming up and were going to discuss which medications may help. Im trying the natural approach but its not making a huge difference. My biggest issues in order are Gi symptoms, blood pooling in legs/abs (blood flow in general?) and tachy. I can deal with a tachy..its not all the time anymore. My avg Hr is normal now so i feel like id rather not start a BB. The GI issues and blood pooling are the symptoms that make daily life really hard for me. My doc mentioned a few diff medication and the ones i remember and looked into a little bit are: pyridostigmine (Mestinon) and Midodrine (proamatine). If you've taken or are taking these meds i'd like to hear about your experience with them. Good or Bad, doesn't make a difference, Im just curious and would like more info before I go to my appointment. Thanks!

I can relate too. I heard "there is nothing we can do" for 3 years from my GI's (3 docs). It was so discouraging and disheartening! Im so sorry you're going through this It sent me to a real low place when it happened to me. After about a year of giving up on myself I was referred to a new GI in town...She was a blessing and found what other doctors didnt test for. Please dont give up..there are good doctors that will think outside the box and do EVERYTHING possible to help you get to the bottom. I hope this type of doctor comes into your life soon, I know in times like this its hard to stay strong and positive. Ive found setting a time limit on how long i can be sad over it helps me get through it. I then push forward. I love looking up encouraging quotes. My new favorite is: H.O.P.E (Hold On Pain Ends) Stay strong! we're here for you and know the struggle you're going through

Congrats!! How exciting! I truly feel like Im suppose to be a mom but in a few years...im still young lol I was reading about being pregnant with POTS and heard some good things and some bad. I would love if you kept us posted on how it goes for you! Congrats again!!

I get flushing after most of my meals. I also get flushing spontaneously. Before I was diagnosed with Pots my allergist thought it was linked to a mast cell issue. The tests he ran came back negative but until recently I did not know how difficult it was to diagnosis mast cell issues. Im hoping to get retested during a bad flare up/lasting flush.

My doc told me to get in 10g a day but on average Im only getting 5g and on good days 7g. I still havent reached 10. Im going back in dec and he said if my salt level isnt where he wants it to be I need to take salt pills. Im worried about salt pills because I have really bad GI symptoms and my doc said it might make them much worse. Has anyone experienced this?

I was dismiessed sooo many times in the past few years I cant even count the doctors. Doctors who told me it was in my head and didnt run tests or even examine me. Its hard to not get discouraged and give up. BUT in the mix of all the dismissals I have found some amazing doctors. I believe they come few and far apart. Dont give up! Hopefully you will find one soon

Thank you for all your responses! I finally feel like im not the only one going through all of this! But its also unfortunate that you all feel this pain too. Ive tried soo many GI medication..the list is too long to type..and only zofran and phenergan (sp?) has helped. I take zofran regularly to be able to eat and on worse days phenergan. My Gi symptoms are the only symptoms that are constant while the others come and go. Im 5'2 and for the last 4 years I was only 85-90 lbs. With a lot of zofran and hard works i just broke 100 lb! im very excited but the pain with eating is so hard. Each meal i have to motivate myself. If I could get my GI symptoms managed I feel like i could be a functional person and take more classes in college. With the exception of the flare ups of other symptoms here a couple times a month. Is there a subgroup for POTS who GI symptoms are the main issue? Hope you're having a good day!

Oh and have you found any medications to help with the symptoms? I take zofran daily as i need it for neasua but im open at looking into other medications and i like trying the natural route first.

Thanks for your reply! If you dont mind me asking, do you have food allergies? My docs kept telling me that was all that was wrong with me and i kept searching for answers. it wasnt until my Hr and Bp became more of an issue that they started taking me seriously.