Relax86

POTS is a very disabling illness. I'm sure it feels surreal to have to entertain LTD. That's why those policies are in place and our symptoms pretty much take over every system in our body. I did have to walk away from a job in Feb - I didn't love that position but POTS forced me to have to resign. Once I was able to work I found something else and I'm at peace. I don't have the option to worry or waste emotion on feeling like that job loss was a failure. I was able to improve my symptoms and find work when the time is right. Take care of you. The rest will fall into place. I don't blame myself for my POTS but we are all very driven people. The long term disability is the time you'll take to find some solution for you and your body. Good luck.

I'm also very low BP when I sleep. Wake up panicked, sweaty, heart sometimes racing sometimes just pounding hard, sometimes feel like I wasn't breathing, also feels like my body goes thru a forced exhale - when it's supposed to be inhaling. It stinks to wake up this way but the good news is - despite this happening to me for several years I seem to always wake up.

I had the same difficulty with music and TV. I would turn it up/down to the most tolerable level and try and breath thru the sound. I did not want the sound sensitivity to worsen - so as a desensitization exercise (which I read some place on this forum) I would lower the volume, dim the lights to tolerance. When I needed to shut down I would.....but then give it another hour or so and try again. At night my symptoms would lesson so I made a playlist of songs that in my past had brought me peace and I would play those to tolerance. It seemed like the next day was like starting over. But at some point the cycle seemed to break. Most days I can turn the radio on during my drive to work but just low and only certain sounds. Some days driving is nearly impossible and all I can do is pray I make it. I just roll with the changes, I guess.

@Bananas -Very true. I went to the Zac Brown Band concert this weekend. I am very grateful that I am well enough at this point to even schedule and attempt to go. I would never have dared to think I could accomplish it 5 or 6 months ago. But going to a concert entails these details: will I tolerate the heat? the noise? the possible smell of folks getting high? will I be able to walk from the parking lot? sit in my chair, get myself to the bathroom if/when needed? My husband drove me when our friends took a party bus because I wasn't sure that I can last for a late night at this point. I know there are easily 100 people on this forum who would love to feel well enough to even attempt to enjoy a concert and I did have fun. But there's a certain amount of fun that's spoiled by having to be affected by these elements all the while pretending you're not affected and being told by friends you haven't seen in a while the classic line of " you don't look sick at all ". My point being I am better, but I just wonder if I'm accepting most of the symptoms. Thanks to all on here who understand each others frustrations with our limitations. Thanks Bananas.

I also no longer fit the criterial for POTS at 7 months out. My symptoms are less without a doubt but also my ability to tolerate them is also so much better. I push through a lot. But the bottom line is I rarely ever feel like me. So yeah, I say I'm better at month 7 but am I really that much better or did I beat the anxiety component to be able to push through a day? I still have low BP which I successfully medicate. R ear pain, facial pain, and neck pain...sometimes my R facial muscles are weak, some days my veins pop out in my right hand and the hand feels like it's burning or weak, occasionally the left. I have R or L headaches, somedays I'm too cold, can't digest my food, have blurred vision and less often tachy. But systems are NOT working and I have no plan but to keep on keeping on. But yeah, at 7 months I've resumed a more functional life despite dysautonomia.

For me it seemed that the longer I was sedentary the worse I was. I had to move to break the cycle. If you are medically stable then try sitting for short bouts for instance 1min every hour. Increase to standing for 10 seconds once an hour. Walk 3 steps along the length of your bed. 5x per day. All possible starting points and progression examples. Also remember to breath throughout your trials. I think the key is to start somewhere and don't give up. I know we all hate the ER....but if you really can't sit then you could try an ambulance ride to the ER, being admitted then possibly discharged to a rehab center. Maybe get your doc to write you a script for home care physical therapy if you don't want to try the ER route. Then you can have supervised progression. That helps with confidence and anxiety. I can only imagine that staying down seems to make getting up that much harder. Post your achievements to they can be celebrated among people who understand where you coming from and how hard it is. Good luck.

I am careful about head posture. Seems that if I look down for too long such as at my computer, or look up for too long such as at the hairdresser or in dental chair I can become symptomatic. Shrugging my shoulders, which I find I posture myself that way a lot will bring on symptoms quickly. Also, if I do the stand up tanning with my arms overhead - huge no - no for me. I seem to need vascular clearing thru my neck.... have no clue why that is or how I figured it our for myself but that's my new weird body. Good luck.

I question how much time I should spend looking for Doc's. As there are none in my area. Some of the folks here who have had autonomic testing, Qsart testing, autoimmune tests etc and who know exactly what type of POTS (hyper or hypo) or Dysautonomia they have are still very sick. I say that will all due respect as well. My point is - should I push hard to find a cause or just listen to my body and treat accordingly? I'm no longer interested in seeing another 'wrong' doctor as I've done that already. But i'm unsure the right one will make a big difference.

Not to be repetitive on too many topics...but I did well with hydrocortisone. Originally did 10MG in the am and 10MG in the afternoon for about a week. Weaned to 5mg 3x/day every 4 hours. Recently weaned to 5mg 2x/day at 8am and 6pm. Goal is to get off but not at the cost of increased symptoms. Gave me the ability to breathe back. Also reduced R ear pain, R neck spasm near my carotid and helped me have a little break in feeling so ill. Lastly, the reduction of those symptoms namely the breathing problems helped me deal with and reduce my anxiety. If there's a next time I would possibly try an SSRI or something like it as I've seen people on this forum credit there symptom reduction to finding the right one for them.

Unless I'm not reading/understanding this correctly then this explains why hydrocortisone helped me get partly thru my flare.....and now it seems midodrine is also making some progress. I wish I could have tolerated the fludro but the timing of my attempt I think was bad - as I was very sick and my body was rejecting everything... I was also very frightened and didn't understand POTS. God forbid this happen again - I would always turn to cortisone again in addition to a better trial attempt of fludro. This post/topic is very meaningful to me so thank you Rich for posting

Great news... I always want to believe this will be me. I try and tell myself exactly that sprinkled with "I can learn to push thru and live with this". Congrats to Jonathan. And Julie I think it will happen for you too!!!!!

Both of my relapses occurred the week after New Years - 2009 and 2012. Didn't have a cold, flu or virus. Was tired from holidays, too much family, eating bad crap and probably drinking a little too much. However, same holiday experience in 2010 and 2011 without POTS flare. 2009 symptoms were moderate for about a week, then concerning/mild for another 2-3 months, and manageable by late August. 2012 symptoms landed me on disability for a month, then part time for 6 weeks, I returned to work still very sick and thinking I wasn't going to make it but slowly improved with small relapses....today I feel about 80% better. Today was a good day so that's my perspective.

I don't have enough Dr's who are fighting for answers for me. I have a very supportive PCP who sees alot of kids with POTS who outgrow with time and some fludro. He has been supportive but wants to put me on their clinical pathway and expect the same results. I'm not sure he's right or wrong. My cardio says he has 4 other pts like me....he has been nice and also acknowledges how bad he knows I feel. But doesn't know how to proceed or where to send me. The other 4 pts he says all are built like me, and look like me with type A personalities - I don't want to read too much into this but it feels mildly judgmental. I'm an outpatient Physical Therapist and I work really hard looking for clinical pathways for my pts that need care. I research, I try harder, I try other options that aren't the typical norms... and it seems like I'm blown away that they Doc's in my circle have done nothing of the sort for me. I agree with Jangle and my plan is continue to look for providers who want to work to find help for me. I will keep the nice guys in my circle but I need a specialist with some answers - if they are even out there.

I felt the exact same way, I rejected the idea of trying BP or HR meds the first time and got well with correcting anemia and Vit D deficiency. This time I used hydrocortisone early on to correct what I thought was adrenal issues....this calmed many symptoms but I plateaued. I kept feeling like my body was attempting to regulate itself. I had days where if I was quiet and meditative enough I felt like my system was searching for it's balance. Except I stayed in that plateau. 6 months after onset (around last month) I began a small dose of midodrine 2.5mg twice a day. This did improve my low BP's and help with my energy level....my other plateaued symptoms seem about the same or maybe a little better - depends on the day you ask me. Today I was nearly symptom free for most of the day so I'm feeling optimistic. When I get a good day then optimism kicks in and takes me a long way....sometimes a big part of the battle. I say to listen very carefully to your body. You could be exactly right. According to some on this forum these symptoms wax and wane when they want to anyway. I believe for some of us our systems still know how to regulate themselves if given time and some of the right support. Not sure that helps at all but wanted to share my thought process on your question. I always have too long of an answer ~ sorry. Good luck to you

When my standing HR is 100 to 105 I feel terrible like derekliz. 92 is usually my norm. I always wonder why my small window of tolerance especially when i see people like Rich on the forum with 130+. I faint at about 110 or at lease go pre-syncope most times and have to lay down immediately. But my sensitivity is weird to me??? Functional at 92 - terrible at 100+. Makes no sense.

1st time i corrected the anemia and vit D deficiency, stayed hydrated and kept moving. I got 100% better. This time I was hospitalized for 4 days which I think caused my POTs-like life to turn into full blown POTs. I used hydrocortisone which calmed down my system. I have low BP and couldn't get it up with just water, salt and gatorade. Once I hit a plateau with my attempts I started midrodine. 2.5mg 2x/day. I like my pressure being up a little as it gives me a functional boost. Does not take away my internal tremors, ear pain, I still get tachy when my autonomic nervous system seems to want that, I'm still having temp fluctuations. In fact all my symptoms continue to evolve. I feel like if I look back at my posting history my symptoms last week do not match last month or 4 months ago or even today. Hippychic - i'm really pulling for you.

The only comment I have is to ignore people who smirk at you. But good luck with your testing. I did the monitor that you hold up to your heart back in 2004 and it did catch some things. I journaled if I was suspiciously feeling symptoms and when I was definitely feeling symptoms and it caught it all. The journal was the key. This was before my diagnosis and the only results I got was "yeah there were some abnormalities". I've had 1 other smaller bout of POTs since then but this January was my big one. Again ~ ignore people who smirk. I've been smirked at more this year then ever in my life and I contribute that to ignorance. Nothing will stop my from trying to get well. Good luck to you too.

Thanks ..... truth be told. I'm not that committed at this point. Not that I don't want to get better b'c I do. I possibly haven't done as much as I could with the medical community yet before I start becoming my on geneticist.

I just pulled up this web page and it doesn't give a ton of answers as to what they test for. It talked more about ancestry. I have noticed that some folks here have this genetic testing kit performed on themselves. I have no medical direction but I do have Doc's that would more than likely do what I ask. I have decent insurance. Should I just pay for this testing or are there tests that I can ask for that would give me more clues? I've had general blood work (anemia - improved but low ferritin), corrected vit D deficiency, suspected low blood volume, supposedly normal cotrosyn test, low electrolytes, low sodium, high DHEA, high prolactin (yes I am lactating a little and i'm 44yrs old, not pregnant, normal mammogram), lower end of normal T4, normal CT scan, brain MRI with contrast, normal thyroid ultrasound, normal carotid US, and a TTT in which I didn't pass out and I believe was unremarkable, normal brain EEG, normal echo, normal stress test. Only thing is, I'm just not normal.

I never tolerated heat well even when I was so called healthy. I always had a face that was more red than everyone else, and stayed red for much longer than all the rest. The heat in S Jersey has been pretty tough. I stay indoors most of the time anyway. I'm on Day 7 without electricity from a storm last weekend. My husband put in a window AC unit running off of our new 'generator life'. I think the stress of not having electric, and running water for a few days has not been good to me. But even the change in air quality has been hard - going from central air to window AC unit. Also the noise of the generator and AC makes my system nuts!! But yes, the heat affects me greatly. I recently started to sweat again. Stopped sweating in January and became a very cold person. I'm hoping the restart of sweating is a sign my system is going to try and reset itself??? Unsure. Stay cool everyone.

I am always googling this site and in general for any persons that have recovered and left POTS in their past. I had a mild POTS episode in 2009 which was fainting, followed by pre syncope lasting about 3 weeks, followed by fatigue, high HR, abdominal issues that lasted about 2 more months. After about 9 months - correcting anemia and vit D deficiencies I left POTS in my past. Also, thinking it never really getting a diagnosis and then being in denial that it ever was POTS. Was hit again - exact same time of year in Jan of 2012 - this time with 4 day hospital stay, resulting in missing about 2 months of work, and still fighting to recover in month 7. I am much better than January but not even close to content with my recovery. Although I feel lucky compared to some on this forum. My attitude is a combination of telling myself these 2 conflicting options: "Tracy - you will see full recovery again. Do not stop fighting for health and answers" and also "Tracy - make peace with what you have and learn to cope with where you are; feel blessed that it's not something worse". Additionally I also let the fear of the next bout creep into my head. As many people on this forum seem to relapse. I try and live significantly in my moments of health or nearly feeling normal and push gently thru the hours or days of higher symptoms. Overall, at this time, I am getting better. Good luck to you.

I just re-read my post which said 'i credit myself' ....which sounded awful....what I meant is that I had really very little medical assistance and I was just on an uneducated guess every day and praying for improvements. The hospital made me worse, my family was scared to death and I had no idea where to turn.

Anna - I really don't exactly know what i have as I haven't had the extensive testing as most of the people here have...was diagnosed with POTS by my family doc. I don't think he was wrong at the time but some of my symptoms keep changing. Regarding EDS - I think it's a no for me. I don't have the hyper mobility nor do I have any pain except R ear that radiates down my neck.

I was not bedridden for as long as most. I think it's because I had no idea what was happening to me and kept on trying to get up. After 4 days in the hospital and ruling out strokes, heart attacks and brain tumors I just figured there was no reason not to get up. I pushed myself to do simple things in short periods such as walking to the kitchen and stand for 5 minutes, be seated at the kitchen table for 30 minutes when the kids came home from school, try and take a shower by 2 pm. I was scared a lot and had to push threw the fear a little. It's so overwhelming not knowing what is happening to your body. I also downloaded a few songs from my childhood that gave me happy memories and would listen in the evening (I usually felt better at night) and imagine getting my old life back. Acknowledge baby steps such as if you do get out of bed and walk 5 feet definitely celebrate it....post it here so everyone can congratulate you. I feel like I credit myself and this forum for my improvements thus far. I have no DR that knows more than the people right here. I believe that you can do it hippychic.

I'm annoyed that my ear symptoms, and R neck pulsating are constantly ignored. I watched 5 minutes of her video and she mentioned CCSVI. Something I've not yet heard of and something no Doctor has tested me for. I wish just one of my providers has worked hard for me the way I work hard for my patients in Physical Therapy. One of my primary symptoms always has been R neck spasm, ear pain and lots of times the rest of my POTS symptoms follow. I'm not trying to say that I diagnosed myself with CCSVI but if I could just get a diagnosis I can go about finding my best solution of maintenance. It does make sense to me that if this is the root cause of my symptoms then I would have a positive response to hydrocortisone because it's calming down my inflamed vein.