Help4Me

Scott when did you come down with POTS>....??? did you have any infection or other thing just before you got it ??? I just woke up one morning with it......Yes I have horrible motility issues ....that is why I had to have my large intestine removed....I have an ileostomy and yet my stomach and small intestine still move at a snails pace....I used to drink Coffee and it was so very helpful...but now I can't drink it or I go into a HYPERPOTS attack with high blood pressure and high heart rate that will last for up to 36 hours....and I end up in the ER....no fun at all....I may try decaf coffee on a day when I feel stronger....but not today.......I believe this is all linked together.....I don't know if it is the vagus nerve or some other issue like SIBO infection which messes up the immune system setting the stage for POTS>.....I am determined to get to the bottom of it.....I study all day everyday online trying to put the pieces of this puzzle together.....read literally thousands of stories of people with the same symptoms....some DX with POTS....other DX with MCAD and LYME>....but basically they are all the same symptoms....they are all connected somehow......

Yes Scott.....I guess I shouldn't get my hopes up so high when I have the odd few good days.....I am wondering about the link between gut issues and POTS...because almost every person I have talked to has told me that they have severe GI issues.....either the GI issues came along just before the POTS or they started at the same time as the POTS......I know there is a LINK>...and I was just diagnosed with CHRONIC PANCREATITIS....and I have severe GI issues that I have had my whole life...but never as bad as they are now.....I am eating yogurt now every day and it seems to help a little bit......the only thing that makes me feel somewhat well is when I am on antibiotics...and all my gut bacteria are killed off.....I know that is not good long term but I have ongoing intestinal infection which I think is either causing or worsening the POTS>....I have not had chocolate in 6 months.....caffeine makes my heart go bonkers.....I miss my coffee too.....

Dannyg your exact story is very very close to mine.....I woke up one morning in JUNE with all the symptoms you said...only mine was more severe right away...I was in the hospital for 2 weeks while they tried to figure it out....I did have the TTT and was DX with POTS....I was fine the day before this happened to me.....I have been to the ER over 20 times in the past 6 months for the exact thing you are there for at this moment....I have had 6 ambulance rides.....for a few days I slept in my car in the ER parking lot....I was and am extremely ill....I have never seen anything like this disease in my life....I too have ongoing Urinary tract infections and other infections....just found out VIA a MRI that my pancreas is bad....it has atrophied..from Chronic pancreatitis......I am not sure if that is what is causing my POTS...but please ask them to check your LIPASE LEVEL while you are at the ER this time......since you were drinking alcohol when this started and also you said you had upper left ab pain....just ask them to check your LIPASE and do a CT of your abdomen....to check for pancreatitis.....infections seem to bring on POTS...or make POTS worse......it is worth a shot to ask them to check it....I feel sorry for you....I have talked to over 20 different people around our age that have suddenly come down with this illness in the past 6 months time......also NEVER take CIPRO again...it is a horrible and toxic drug and could be part of what started this as well......write back and let us know how you are doing.....

I have several good days in a row and start to feel like I have found a system that is working...ie foods, meds, supplements etc......then I will have some really bad days that put me right back to feel like I am dying again......is this "NORMAL" with POTS>......if I can have one good day why can't they continue.....and why can't I find a way to improve......this is so discouraging....every time I get my hopes up that I may get stronger....I end up back being a wet noodle again .......

Potsiebarbie, I also get them .....skipped beats, extra beats....and I also get the need to cough when it happens....I wonder why that happens.....it also scares the crap out of me.....to add this with the sudden POTS coming on out of the blue 6 months ago......I don't know my own body anymore.....I am constantly scared which isn't good for anything......I am taking magnesium and also drink gatorade for potassium.....but it doesn't seem to help much.....It might help a little...I can't really tell......I don't get why this is connected to POTS but it seems to be.....

I think I have CSF leak as well.....I had strained quite hard on the toilet the day before I woke up with POTS.....I have had fluid running out of my left ear repeatedly during my 6 month ordeal with this horrible illness......my question to anyone who may know is this.....won't a leak heal up on it's own after a period of time ???? some said it took 5 years for a diagnosis....I wonder why the leak won't heal up on its own ??? i have had an MRI of brain and spinal cord....and have many stenosis and Bone SPURS on all my vert...so wondering if they knicked the cord..??? it is possible......

it could be a spinal fluid leak.....you may want to ask your doctor about it and possibly ask for an MRI of your spine.....

I would never be able to go to anything in this condition.....I wouldn't begin to know how to advise you because I can't even bear the thought to getting to my next doctors appointment let alone try to do a vacation...wow.....hope you are strong enough to try it.....I have many other things wrong besides the POTS...so that maybe why I couldn't handle it.....hope you find a way ....

I have this itching too....if I let my HEART RATE be high for too long.....for example if I don't sit back down soon enough...I also think it is a Mast CELL allergy type reaction....

JKLASS.....I do not have high blood pressure at all when sitting down and it goes even lower when i stand up.....or lay down....the only time I have HIGH blood pressure is when I have these random hyper andregenic attacks...I don't know what else to call them....for awhile I was thinking and still might be that it is related to Mast Cell disorder...because it seems I have these attacks when I have eaten something that I react to....or if I eat too much.....I have had a lot of intestinal surgery so maybe my blood vessels can't handle it when I eat too much etc....or vagus nerve issue ??? who knows...I only know I have no control over how often these hyper pots like attacks happen...it is not every day....but when it does happen it lasts for up to 2 full days before my body goes back to stable....which I still have regular POTS ...like when I stand up on a normal day my heart rate shoots up and my BP drops low...and if I stand for more than 10 minutes I start shaking and will soon pass out.....that is a normal day....but the attack days my BP goes up to 220/110 or more......and my heart rate goes way high ...etc.....and shaking is non stop until the attack ends which could be 6 hours to 48 hours.....I have had about 20 of these attacks since June 2018.....

The doctor was extremely abusive to me..as was the other doctor....both of these men need to LOSE their medical degree...I hope I can stop them....I will do what I can...but they know I am poor and sickly so they count on me being an easy victim for them to harass and belittle and abuse.......

UPDATE ....my son is NOT kicking me out......but he does want me to leave.....so at least that is an improvement...I think he realizes it will be hard to kick me out....I am still waiting to hear from my SSI decision....

Lily I see you have HYPER andergenic pots....can you tell me more about that....I think that is what I have...I need info to take to the ER with me...they keep accusing me of FAKING my illness.....

LILY thank you I called them ...they said there is a waiting list.....I left my info.....

Hi Everyone I have my appointment tomorrow with my cardiologist....I need to ask him for a letter to give the ER so when I have to go there hopefully they will stop abusing me.....they do not give me fluids and they accuse me of faking my illness and they do tests on me that are useless such as DRUG screening..when I have NEVER used drugs.....anyway I would also like to know if anyone here has HYPER POTS.....do you have EPISODES of very high blood pressure and pulse.....or is it all the time....mine comes in episodes and I never know when one of these attacks will happen.....thanks

Thank you for saying that SAHM.....one doctor kept yelling at me and saying I was lying and making things up....how can they get away with that....on the overhead heart monitor that shows your heart rate, o2 , and bp etc...my heart rate was 120 and I showed it to the EKG worker...and she said....that is not your heart rate that is an artifact ???? what ??? I said THAT is my heart rate..she kept arguing with me...I put on my wrist BP and PUlSE monitor and took it and showed it to her and said THAT is my HEART RATE....she told me she was a highly trained professional. What a nightmare....then she accused me of taking a photo of her when I was calling a POTS friend with my phone.....they said it was against the law to photograph a health care worker....I told her I did not take a photo of her .

Roe.....I am in kentucky.....and I went to the ER.....was even sleeping in the waiting room....was seen and saw psych and social workers and none of them could help me.....they said I can't get into a nursing home...not sure why not....and they said you could try a shelter but they are full and only let you stay at night etc etc...basically no help at all......I feel like I am dying....and no one cares...maybe that is just how this disorder makes you feel.....but I am very weak, sick , scared etc etc etc.....went to ER 4 times in 2 days because I could not get my heart down....they say it is anxiety but refuse to give me any anxiety meds......i do not have anxiety at all....I only get upset because they called me a liar....I told the ER doctor my kidney area was hurting and he said quote " now you are just making things up" what the heck.//?? I am not making things up...I am not lying....he refused to do some blood tests that I thought would shed light on things...thyroid and cortisol...refused to do them....I am very frustrated..they kicked me out of the ER all 4 times and basically said don't come back.

Hutch I didn't do anything wrong to apologize for .....my only crime was coming down with a dysautonomia...I have done nothing wrong....

I have the smothering feeling too....and I live in louisville ky too...so if you want to get together some time let me know....it is very very hard to deal with...I too had mono when I was 13.....I wonder if that caused this or something else.....do you still see that first doctor that diagnosed you and if not why not ???? I was thinking of getting an appointment with him but wonder if it is worth it if he can't help me....I am already DX with this.....I don't know what to do now......yes I have had the smothering feeling too....at times...it is weird and freaky....and very unpleasant.....Private message me if you want to

Sorry I think it is called Cardiac Vasospasm....

yes there is a syndrome called Cardiac Spasm....it usually happens at night though but you can google it....

I CAN NOT EVEN WALK....called 911 to take me to hospital

i have believed this to be true for a long time since having iv myself no matter how much i drink i cant get hydrated i think the fluid i drink is not going to my cells for some reason they keep sayong drink more but i am and it is constant drinking it does not work

I have CALLED EVERY AGENCY NO ONE CAN HELP ME>...I am not a drug addict or alcholicl all the programs are for them....I am all alone and have NO ONE now to help me....I am so scared...I have been crying for hours now and it is not helping my HYPER POTS blood pressure is off the charts

I contacted those shelters and they cannot help me...they are for people with drug or alcohol problems.....I don't have either....and I am BEDRIDDEN they cannot take in a bedridden person...I don't know what to do...I need a miracle to get healed...or for my son to grow a heart