Relax86

I agree with andybonse....I think as the body is trying to 'right' itself there can be times of over-compensation during the healing phase. I experienced some days with low HR's in the 50's and was sort of puzzled. One forum poster had said they stopped looking at BP/HR numbers as our systems arent' functioning so the numbers don't represent our issue. Also, we can feel decent with numbers out of range and we can feel terrible with good numbers. So I took that advice (for the most part) and I don't use HR/BP data as a marker for successful recovery. I go by how I feel. I had a little bit of a rough december and was worried due to a Disney trip planned for Jan 15-21st. I had some stress during the trip (bad contact fit, traveled with 8 family members, my husband hurt his back the week of the trip) and thought I was gonna flare while gone. I had about a half day of flaring. Had to push my husband in a wheelchair for 2 days which I thought I was totally doomed but came home feeling so incredible. Have had about a week of 'normal'. I share the story just as testament that this condition just makes no sense. Dave - I'm not a dairy fan. But I think your change in symptoms could very well be a healing sign. In the 8-9 month mark after my worst flare I had terrible head pressure, silent migraines, which all seemed to dissipate with time and persistent exercise in my tolerable level. Good luck to your continued improvement. Recovery can happen!!! I'm probably consistently 85% better with occasional slides in either direction. From being bedridden to today - I'll take it. Hang in ~ Tracy

If I were to go back and re-read my posts it would be characterized by fluctuations and flares. The holidays seem to be fainting season for me. Most of my worst flares were in Jan - usually right after the New Year. This year I didn't even make it that long. Who knows. I do have an autoimmune component so the timing makes sense for me. I also have symptoms with storms, heat, previously was hypovolemic (prior to uterine ablation), etc. It's the unfortunate growing process of this syndrome trying to figure out it's patterns. And also, not letting it get you down when a flare comes out of the blue. One of the things that helped me the most is to learn to ride the POTS wave and most importantly - you're not alone. Good luck.

During the worst flare in 2012 I had significantly blurred vision as well as a 60% reduction in my left eye. Eye Dr said his worry was that it was uncorrectable (assuming with glasses or contacts). Since then, my flare has improved and my vision as well. Also to note, I had low Aldosterone during my flare. My recent eye exam found a hole in my retina. I believe - not my Dr - that the significance of near sightedness I experienced during the flare was enough to tug on the retina. I also have B/L retinal thinning. I had to see a retinal specialist. He said my hole was in the wait and see phase. Fixing it is fairly easy with laser. He had no interest in discussing the dysautonomia link and found the two to be unremarkable. While he's probably fine to monitor the hole (I go back in 3 months); I doubt I'll let him treat it, if necessary. I have to use Drs that at least pretend to listen to me. Anyway, the point to my post is: for me visual disruption is real with dysaut...my pupil dilation and constriction suffers.

I had low ferritin, low hemoglobin. I don't remember the numbers. I take a 28mg iron every morning and used to also take a 15mg pill at night. I had severe menstrual cycles until endometrial ablation in July of 2013. After this surgery I really started seeing more consistency in my good days, even some 100% me days. I read a ton about hypovolemic POTS on the forum and seemed to feel that was my type of POTS (?). I have not had my blood work retaken in a pretty long time. So unsure where my numbers are. I dropped the second iron pill on a gut after the procedure and I am doing ok.

I can't say I can exercise freely. But I never could. There were clues that I was a dysautonomia person very early - as young as 10 struggling to have cardio status of most kids. I was always more out of breath, more beet red, and couldn't keep up. That being said I found weight training in my 30's and that is very helpful. And still I have days where it seems like I can 'feel' POTS in my system, if that makes sense. I also hope for recovery for all the folks here. So many that are in such a bad spot. I remember the feeling of not knowing which direction to look for answers, not having docs that understood or had answers, wondering about my own sanity and also feeling terrible every day. Scary. But it worked out after some self education, belief and trial/error. There are some real pro's on this board. Many of which are no longer actively posting. But look up Rama, Issie, and there's also another person who was actively running while tapering off a heart rate med (I think). Anyway, some really brilliant folks. Also the moderators are helpful in that they have experience. While I like to post the positive feedback that I did get better I type it with respect in terms of worrying that it sounds braggy. But it was the one thing I always looked for when I was lost and feeling sick daily - just one person that got better. Good luck to you. Believe improvement and life quality can happen.

I got better!! Hang in there and believe that progress can happen. I was very sick at one point, even bed bound for a period. I try and pop on every once in a while to let people know I got better. If you read my back posts I think I was saying I was 85%. I did have some slides here and there in my recovery. I'm coming around to the 2 year anniversary. It was around 2 years ago that I began to have symptoms, crashed after Christmas, and landed in the hospital for 4 days - finding nothing but ruling out a lot. I took a trip to Florida a few weeks ago to see some family and I struggled with dysautonomia symptoms while away - fear of flying, being off my diet, a little family stress, I drank too much, it was hot and a fearful flight home. But once home and back into my routine I am feeling decent. I've actually had a few days at 100%. One of the things that worked for me is to stay moving (in various degrees - some days that was just 2-3 trips to the kitchen). The more I was bedridden the sicker I felt. I had to break the cycle. Finding the combo of meds, nutrition and not pushing too hard too fast (if you read my past posts I did relapse with over exercising) helped with my recovery. I recommend finding people here who share symptoms. But also try not to get discouraged b/c our systems are a little broken. I remember following someone on here who was running about 4-5x/week. Every time I would try to ramp up my cardio I would crash for weeks. I settled for weight training and it worked for me. Don't give up. I believe this autonomic condition requires re-training of our systems of sort. Not everyone will respond to this but some breathing, meditation, belief, prayer, positive thinking, etc.... does soothe our very sensitive systems. Hope you find my thoughts helpful. Remember, it took me 2 full years to get here. Stay in the light. Hugs, Tracy

I'm low. Don't remember my lab numbers. But I take D3 5000 iu's once per day. I also tan once per week in the winter. I sun screen my face while tanning. Haven't had my numbers re-checked in a while.

I got back to work. I work in outpatient Physical Therapy so I'm on my feet most of the day. I do have opportunities to sit and do charting. I was off of work from Jan 2012 until mid Feb 2012....I went back mon, wed fri until Mid march. Going back to work slowly was helpful. In my case it also seemed better to move a little because the more I sat the less I could get up. Don't get me wrong, when I did get up in those early weeks I felt terrible. But small steps were important. I used salt, hydrocortisone, midrodine, tons of water, coconut water and slow progressing weight training to get back to work. I always wanted to start to run but I couldn't and still can't control my HR when I take a fast pace walk. As far as cardio my body won't cooperate - plaguing me when I push to try. So now that I can grocery shop, carry the bags, work, play - all with slight modifications I don't push to run like some of the forum folks. Regarding applying for long term disability I do need to learn about it. I'm also an amputee with a dislocated hip from a birth defect. POTs/dysaut took me out worse than the leg ever did but inevitably I will not be able to work until a regular retirement age. My POTs symptoms seem to be under control, but they flare fairly easily when triggered. It never fully went away. I am grateful for the recovery that I did make because I know some here on the forum are just so sick and can't seem to find a way to get better. But this bout (my 3rd) only let me get about 90-95% better on my best weeks. So I say ~ it can be done ~ fight to get your life back and life like you will. Think that you will. Meditate that you will. Good luck ~ Tracy

Justin I was only POTs by diagnosis for a short time during the worst of my flare. The remaining symptoms were dysautonomia related. Once I became totally cardiac cleared, I saw an endocrine specialist who found a few things (non definitive) and a rheumatologist (also not highly positive). My cardiologist has some experience with dysautonomia and feels that my underlying reason lies within the endocrine and or rheumy system but at a sensitivity that will not fully be found with standard testing. That being said I felt comfortable with exercising within tolerance....slowly building up. I also researched and was prescribed hydrocortisone for adrenal fatigue which really helped me a ton. Do a lot of research about that then decide with your Dr if that is an avenue for you. I use Midodrine periodically. I meditate to quiet my ANS symptoms a bit and slow my HR. I also really balance my activity with rest. More sleep/rest than most, more water than most, salt, avoiding most gluten, most artificial food additives, mostly clean eating. I am functional. It can be done. Your symptoms match a lot of mine. I'm also a fainter, low BP, terrible fatigue, noise, light, heat and smell intolerant. I scrolled this board for a year watching people like me and seeing what worked for them Good luck to you.

Hot showers are history for me. Still a trigger and I'm nearly 2 years since my last bad flare. I call myself approx 85-95% recovered depending on the post topic or timing. Nonetheless I am much better but still have set backs with certain things: hot showers are absolutely one of them. We also have a hot tub which I have avoided for nearly 2 years. I recently got in twice in the last 2 weeks and struggled for the rest of the day when I did. I would usually get in with my youngest daughter early mornings on a Saturday...unfortunately I need to not get in...but bundle up and hang out with her (she's 15 and safe in there). Just wanted you to know you weren't alone with your response to hot showers. Good luck...hang in.... Tracy

The symptoms you're describing are my normal dysaut symptoms. Period plus weather patterns always equal some level of a flare. Meditating helps me a lot....hydrating...recently started earthing if it's not too humid. Truth is, if the barometric pressure is changing on the outside I still feel bad inside the house so getting my bare feet on the ground doesn't make me worse. Only exception is heat and humidity. Fall days are great for outdoor meditation. Good luck with your symptoms artluvr09. I'm not saying it's normal but it is the norm for me.

ALex My adrenals checked out fine as well. I don't know my exact numbers b/c that Doc I was working with was very difficult. He did say that I had a blood volume problem. One of main problems was associated with low BPs. The HC helped a lot for breathing issues, internal tremors, helped with my vision and light/noise/smell sensitivity. The midrodine was what helped my BP. I was resistant to midrodine and kept using salt and water but the results with the drug really made a big and positive difference for me. So I use a mix of HC and Midrodine. I was off all drugs since May of this year and last week just started dosing again as my symptoms started to peek then my BP dropped. This time I didn't wait until I jumped back on my routine, Feeling better already with this combo of drugs. Good luck to you Alex.

Yes. elevated. The Doc went "wow you do have breast milk?!?" I felt like saying --- no this just seemed like a pretty sweet, attention getting fib that was more fun than saying I'm tachy today. Had follow up Pituitary MRI to rule out issues there - negative. So I just deal with lactation. It's way better than fainting. It's pretty amazing the symptoms I'm willing to totally live with after spending Jan 2012 bedridden and the remaining year fighting for my life again.

Rich I'm about to schedule to see a Dr Soloway. I have heard he's been good in diagnosing a few cases of PAF. I'm not that sick thank goodness but I think he's not afraid to try some new stuff. He's in Vineland NJ which is South, near me. I happened to come across a 3 hour long lecture he gave med students and I liked him. I'm running at around 85% improvement from the crash of 2012 (haha), and I've given Dr's a break for a while. But I need to keep my eyes open for the person who might just figure me out. His lecture is on FB. I'll try and share it

I've been using half of a 2.5mg of Midrodine in the morning and around 2.5 mgs of HC around noon to get me thru. These are very small doses that seem to prevent me from sliding right into another flare. I did have a +ANA but then other testing proved negative. I fit adrenal fatigue like a glove sometimes. I also fit some of the HPA axis dysfunction type stuff with dehydration. And additionally I lactate - apparently just for the fun of it :-)

I'm a low BP dysaut... usually 90's/50's....has dropped even lower. Feels pretty crappy. Midrodine helped me. But also I occasionally dose with a very low amount of HC during flares. I had a full cardiac work up - all negative. The low morning BP is a crappy way to start the day but I was told that it's not life threatening. Good luck ~ tracy

I think a decent portion of my friends love me enough to shake their head and say they believe in POTs when they really think I just lost it. Once actually said "I thought you were only having anxiety about work but when you went back to your old job that you liked and still didn't get better, then I started to think that you were really sick". Essentially, this means to me that most of my circle must think I'm a ball of anxiety but they keep that conversation on the down-low. I finally accepted my POTs diagnosis...it is what it is. I did get better (85-95%), that's something I can live with. It doesn't make POTs better to worry about anyone else.

During the height of my flare I did have low BP issues. Usually way worse in the mornings (85/45ish). I did have 1 Doc who said that once my endocrine tests came back negative she would recommend dexamethasone for me but then she rescinded that plan. No clue why. Eventually I needed to use Midrodine which was helpful and I weaned from HC. I still on rare occasions dose the HC when symptoms begin to arise. I think it works

Me too and I was running at about 95% improved. Lower BP, some mild pre-syncope feelings, R ear pressure etc....

I got better with HC and have consistently credited it with my near recovery

I often felt this way. It seemed like symptoms could be eased or provoked by my neck position. Symptoms often started in my right ear and ran down my right anterior neck. Have no rationale as to why I had success at times with changing head position and no results other times. I just chalked it up to the mystery of Dysautonomia

I tanned once a week or so thru my recovery. I like the light. Sometimes I would get overheated but symptoms would be very temporary. I also would use the fan, bring wipes and also my cold water in with me. I'm low Vit D and supposedly don't always absorb my vitamins. I used sunscreen on my face. But in the winter it really helps me. I probably go about 20-25 times/year. It's tough on the budget and I sometimes just fall out of that routine.

I also had a positive ANA but my pattern indicated Scleraderma. I tested neg with more advanced testing for Lupus, Sjogrens, etc.... And follow up ANA's were negative. I sorta feel like during my POTS I was in an "autoimmune state" or in a period of an little "autoimmune state" I got POTs. I had a follow up with my cardiologist and he loosely suggested that most POTS is probably due to underlying endocrine or autoimmune issues that go undetected by blood work but it's enough of an issue for some peoples systems to develop forms of Dysatonomia - including POTS. My cardio really gets it. Anyway, hang in there!!! I got better. I'm usually around 90-95% better most days. Dysaut buzzes lightly thru my system: I can just feel it. And people on this forum know what I mean by that. But don't doubt that you can get better. Also, I should say that I had testing early on that showed a possibly blood volume issue but that Doc said I was skewing my own results (yes because thats just what POTS pts love to do - is skew our results!!!). I was having monster menstrual cycles and had years of chronic anemia. I had a uterine ablation in July and I thing that procedure solidified my recovery. Good luck to you all. I don't think autoimmunity has to be a forever state. Our bodies can heal.

I sent myself the link to read the full article. But meditation and mindfulness kicked me over the hump. I feel like me most of the days in Aug and so far September. Hoping the flare of Jan 2012 is finally behind me. Thanks for the link.

No anxiety for me. During my bedridden days and also my initial return to work when I was worried that I wasn't going to get truly well enough to function I did have considerable worry and fear. But not anxiety. I definitely see the difference in Dysaut and anxiety and I feel bad for both cases and understand the concomitant nature. But I'm just straight up POTs and now just dysaut. Good luck to all