Faye

When I feel lost, out of control, and overwhelmed, with my normal outlets being closed off; honestly I cry....sounds so silly and simple (never use to), call on my support ppl( here and close understanding friends), let all the random thoughts and feelings loose. Then I take to mediation ( or prayer). I am not sure if you are lacking support in this area or in general...If you have ppl close by can someone come and sit with you or a person you can call ...To just listen.....

I truly empathize this storm you are going thru. When there are so many things going amuck it is overwhelming to know what to tackles first. Sometimes we just don't know what to focus on. As a care taker of my spouse (Diaylsis patient with heart issues) it comes, these storms.

In the moment you don't know if you should put your snow boots on or duck and cover...if you are able to take get your Drs to work together as a team, if that is an option to help come up with the best solutions, understanding your concerns on being on a ton of new meds and how your body reacts....maybe like a group conference if they are at different medical facilities...and maybe include you after so you have a better idea and several actions plans...

I am sending you cyber thoughts of encouragement to hold steady you can do this...not fun but you are strong...Keep posting there are so many knowledgeable ppl here who understand and care.

If you all try it out on your spouses do share how it compared I am very curious to see the difference

Thank you for sharing my happy moment!!!! Only you all understand how having a medical expert willing to work to help and believe you need treatment or some plan to have better days

For me emotional frustration, or trying to do any exercise and hold down a full time job, or lack of sleep with the combo will result in high heart rates and GI issues( abdominal spams)... I am finding my old 'normal' doesn't fit in too well with the new body and it's delicate self....too much of trying to do it all and being super women....leads to a day or so of not so great....its frustrating when you want to do it all and your body says ' OH NO YOU DON'T'... Trying to learn to pick and choose and take it a bit slower is a challenge....

Some things you just NEED to do....

We are hitting out busy season at work which means 60 hours a week, that doesn't include the paper work I handle for my husbands business.....so this should be interesting to get thru...if you find any tips and tricks do share!

Had my follow up and tho the DR had confirmed it was POTS that day....and changed my meds....we are now on the journey to work on my symptoms and then see about underline cause...if we cab pin it down.

Of the 4 cardiologist I seen, he was the only one who wanted to do a TTT....and when I said to him I realize it's not probably a big issue compared to your other heart patients he was so quick to say NO Pots is serious, and we don't want you passing out that could be extremely dangerous if your driving or walking down the stairs or just hit your head...it was just so nice to hear a Dr say don't down play your symptoms, I Take them and you seriously.....

It is so sad that even the cardiologist who have heard of POTS don't take it seriously and say just don't stand still or relax....I know it impacts ppl differently and it is still so misunderstood....even so....they should just say it's not my area let's see if we can find someone who can better help with diagnosis and treatment...

I know it may be a journey and there will be bad days...I am reading about how they vary and keep us guessing all the time...but for the moment just so excited about someone saying we will figure it out...and wants to hear it all even if it doesn't sound related...and meet regularly until we get there....

I can so relate, was in the pharmacy yesterday and had to wait in line....so I was literally marching in place and kicking my legs around...my daughter whispered do you need to pee or is that your POTS.? Needles to say if I don't have someone with me and have to wait inline ppl probably think I need to use the bathroom or have possibly a nervous condition.... But you know whatever it takes....I

Just keep moving....

I couldn't take it went to the dr... He said neuropathy of the ear and tenderness goes hand in hand with typically with shingles and/or infection.....said usually if shingles will present after day 6 of pain....so decided to start me on meds as a precaution and will call him in 3 days to see how I am doing. Sigh....the pain is better today and tenderness is better....we shall see

Past couple of days behind my ear, I think is lymph nodes, they do not 'appear' to look different than the other side, but it but hurts something awful, like if I was burned by a curling iron.. My temp is little higher than usual, 98.3' I am usually 96.7, don't feel feverish... I don't think it is related to POTS, but just wondered if anyone knows anything about this.....I tried my good friend Google, but didn't find a lot of info...I will try to get in to see my GP, but geese it hurts something awful....none stop burning (my inner ear feels fine)...

Oh my! It hasn't happened yet, but I a sure it will....coming off my beta blocker to do TTT was awful, even now being back on I have high HR sometimes.... Hope you could breath thru, lay down and rest to get through till your next dose...

Pre- all this POTS... I use to do 5 miles a day and then some days do weights, or yoga....none of this is happening now...but I have been doing 6 small meals for decades due to low blood sugar....I have always been weight/ health aware...but since getting sick, and starting Beta blocker, find the pounds are growing and not lowering....just stared to try some floor exercise and tiny walks....hoping this helps....food wise my diet has pretty much remained the same...so trying to understand the weight gain...my thyroid is 'ok', other hormones 'ok'.... I understand the intake outtake process...but someone still struggling with the pants not fitting...read could be due to beta blocker;( but it does help with HR in general and brain fog....maybe I just need to work up to 'moving more' loved to hear if there is a different approach.....or any secret... I am sure not doing a low sodium diet adds as well....

I'm just so use to always moving and doing, that having to modify and change to a slower different pace of life is tough....I just want to 'do' and I suppose with time I will learn that ' do' is going to happen just need to know it may not happen as fast or as often or different...getting use to the idea that no matter what could be a bad day/ hours,ect is a hard pill to swallow....being a care taker myself for decades, I can be accepting of limitations and adjustments and roll with no patterns....but that was easier because I could do it all...so it didn't matter....now I can't be super women, and it bothers me....tho I known I am doing my personal best, and logically understand... The acceptance is a struggle when I need or really want to do.....i know I will be ok...but suppose just may need to vent....possibly often....

We have low/ no gluten due to my daughters GI, so maybe that is a plus and I don't take vitamins but good to know to try and keep in mind.

For a person who likes to plan, this sure is a challenge...yes and no and sometime yes and sometimes no....this is just the start of my journey....goes against the grain for people like me who like to know the plan....

Geeze I better take surf lessons for POTS, for these 'wipe outs'...gotta laugh...and shake my head...sad but nice to know others have the 'surprise' grab bag too....

A few months ago, I would have said you just need a hot tub, and a glass of wine... And relax...these day that would just send my HR through roof.... ugh

I was on propranolol but it didn't help a lot with high HR. Last Wednesday Dr changed to baby dose of metoprolol 12.5 mg 2x a day...it actually seems to be more helpful in short time, but sometimes if I try to do/ have a 'normal' day. Work, floor exercise,laundry ect... No matter what ( compression shock, high sodium, well hydrated), laying flat 90/95 is a low as she goes, I know that is ' medically ' ok but I can feel my heart pounding in my throat...when I don't do as much, it might be 75/80.. I know it's not much difference but I feel palpitations, shot of breath,and brain fog....just wondered if this is the new 'norm'...or will come in waves? So frustrating....

Before being diagnosed with POTS, I was on like 20mg, no idea what my pressure was, about a year ago, and my heart rate laying flat was 130, felt dizzy, couldn't take it went to ER, and they said prednisone my body can not tolerate it and that was two days into taking it... The pressure and your hands, sounds like your body is not liking it, I hope you can get a second opinion...and get to feeling better...

POTS is a bit new for me, and I have been doing a lot of reading about pots symptoms and posts here. I was just recently diagnosed with POTS officially, I am sure compared to others, my case is mild, but enough to make it challenging to do the day to day taks, I know my body, and walking up a flight of steps HR would go to 150-170, standing was 125-145, that felt awful, and forget exercise ( I use to do 5 miles a day, not fit but far from out of shape), I went thru 3 cardiologist before I found someone who believed in TTT, and medication.....I am not sure about your insurance or policy, however what I did was call around to local cardiologist that were covered under my insurance till I found an office who heard of POTS and that Dr did have a few POTS patients he works with. No matter what kind of insurance, you have a right to multiple oppions, if your GP won't refer you, maybe find another one that will....just a thought.

I have found being a care taker of my spouse that you have to fight your way thru the health care and insurance company to get the care you deserved. Frustrating as all get out, but well worth it. The folks here encouraged me to keep looking for a Dr who could help, and I am so glad I didn't give up.

Best of luck and wishes.

I'm so sorry your GI is being unkind, but so glad you were able to see a Dr and that they will be following thru with what is causing them. My GI Dr said I know it's tough but this may be trail and error but we will find what works for you. He and his medical assistant are very compassionate and listen to my long list of tummy issues as we try and figure it out...and am very grateful....

Hang in their, it's tough, keeping a 'poop and food' journal was suggested for me, and I am still trying to figure out what makes things worse, I have been able to find a few things that are 'triggers'. I hope you are able to get the appointments quickly.

Take care and be kind to yourself

Dysautonomia is a whole new world for me, and now that I am seeing others and the issues they face, small pieces of the puzzle are coming together, not sure if they all apply to dysautonomia or not, but I have in the past found that extreme cold or heat for long periods of time, and I would get hives....I am now wondering if there is more to it....the cardiologist I a seeing for pots, in my consult had asked me about this, and I was so focused on my high HR, that I didn't think any more on it...extreme stress for long periods of time same thing, hives....always on my face and every joint... Hmmmm

I have IBS(constipation), my IBS symptoms started after two diverticulitis episodes....antibiotics two forms(they made me feel worse) but cleared infection...

For me my abdomen contracts (spasms) as tho I am in labor. There are times I can see actual movement, and it feels as tho a baby is moving or kicking ( no uterus..so not possible) I also have get a ton of gas(many times both ways) that is hard to pass. Sometimes I get nauseous...sometimes I can see muscus in my stool...(don't mean to be gross). I have not 'seen' blood in my stool. I am not sure of your situation but if you have hard stool it can cause blood in stool, or even chronic diarrhea can cause it (think it causes little irritating of colon/ anus). If you are seeing dark or tarry stool please call your Dr. Right away,Well that was the advice I was given.

For my IBS they had me start with a high fiber diet ( with Phyllis husk) and mirlax. Recently they stared me on nortriptyline for the spams which has helped. Frequent small meals, and try to avoid heavy meals, specially greasy fatty foods.

One thing my GI Dr said that helped me is that if the pain/ spams continues, is consistent and gets worse, with chills, and possibly fever ( I never really got fever) that is a sign of diverticulitis, with IBS you notice that the spams/ pain will come and go. Hope that helps....

Best of luck!

Just seems so odd how much has changed like in a blink of an eye....but nice to know I am not the only one.

Managed to catch a nasty cold....my normal temp is lower than most. Like 96.9-97.3... So my little 99.5 feels like what use to be a 101...I know it's not, but that is how it feels...anyone else feel/ have that temp reading and feeling?

For now I think once we get my tacky in a better place then, maybe get GI dr and cardiologist power talking in a few plans to keep IBS spasms at bay and HR/BP for more frequent better days....of the two behaving! Then maybe do something about the restless legs I get at night....I have yet had a day where the two were dormant... A lofty goal, and I am sure I will post those days I am frustrated beyond belief...

But for now at least it is nice to have a dr who believes that what I am facing, that it is real, and going to work to find what works. I'm still,not sure if I found the cardiologist for me, but out of the 4, he is the one who asked questions that told me he has a clue about it, and ways to help treat it, and suggesting some othe test to confirm any other possible causes for POTS...in the mean time working on HR/ BP.

Bercia ,beautifully said, captured it as tho you were looking in my world of thoughts, feelings, and experience of days of recent.

It may seem strange to some, but having an officially name, helps in a weird way. I didn't pass out, didn't think I would, but my heart rate, blood pressure (which got to a point they couldn't grab it) legs wobbling, short breath, palpitations, blurry vision, brain fog....all there....I was so happy to be having a POTSie day...the only strange thing today,Mimi's high pressure for me (120/85)... But then of coarse started bottoming out with tilt...

Dr said classic POTs, we don't know why....but suspect have had it since child hood, but two GI infection may have spun me into this flare....so will start with a new beta blocker....and just keep monitoring for now...if blood pressure starts to go down again them we will add the Midodrine....I think I have been doing the high sodium diet and although it raised my pressure didn't really help with the heart rate...

I have a very nasty headache....but had to thank all of you for encouraging me to stick with beta blocker free and do the TTT. Even knowing what to ask for....this site and everyone's willingness to put themselves out there to be real and honest is such a breath of fresh air...

Tomorrow tilt table test... Made 14 days no beta blockers, a few really rough patches but wanted to say thanks to you all...it gave me the strength to make it. A little nervous, don't like IV.... Not worried about passing out...and ready to see what my body will do.

Thanks KS42!!!! Great ideas and variety! Really appreciate it