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Everything posted by Relax86

  1. I'm someone who got close to full recovery of my POTS back in 2011, 12, 13. I was able to return to work, but it seemed like autonomic glitches continued to hum underneath. I was still pretty grateful to get "better". Around 2015 I was having some terrible stomach pain and I was annoyed b/c the POTS was better. I was diagnosed with Celiac, went gluten free without much change, then continued to live somewhat half hearted gluten free. I would've called myself gluten sensitive. The stomach pain flares would come and go and didn't seem to have anything to do with gluten. This past November I had a pretty bad pain flare, my pain is always under my left rib cage. I'm 51 so I had my colonoscopy, and endoscopy and a swallowed a pill camera and it was all negative except for celiac damage. Ive been strict gluten free since 12/1/19 without much change. A few weeks ago I started getting adrenaline surges, feeling light headed and such. My previous symptoms were fainting but I don't feel like that. This is sort of a new dysautonomia that is gut driven; or maybe the dysautonomia is driving the gut. It seems like our issues are a little parallel. Let's get through it! I haven't been on the message boards quite as much in the past few years. I try and pop on every once in a while and let people know I did improve and it is possible. I'll check back with this thread and see how you're doing. - Tracy
  2. Recently I returned to needing Midodrine after being med free and feeling close to 85% better since my flare of 2011. Not sure why. I caught a cold, but not the flu. I traveled a lot since October and I'm completely over tired. Hang in to all looking for reasons for flares, clues to calm the insides down and a CURE!
  3. At one point I also had elevated testosterone. Never figured it out. Good luck
  4. Just wanted you all to know that it is possible to get better. I had dysautonomia probably most of my life following multiple orthopedic surgeries as a child. Had a few POTS flares off and on t/o adult life never knowing a name to the "crashes". Had a terrible time end of 2011-2012 (hope my timeline is correct) - was bedridden for weeks. Barely functioning for the remainder of 2012. I started to get better with movement (not too little, not too much - I know that's vague), midodrine, salt, diet changes, and meditation. I did have a few clues for my POTS. Low blood volume and autoimmunity. Guessing LBV over time caused autoimmunity. In 2013 I had a uterine ablasion and continued to improve. By 2014 and up to today I feel about 90% better, sometimes 95%. I never feel like the old me, but I work, and work out and have a relatively normal life. I can feel my body sliding sometimes and know my triggers - the usual suspects: stress, poor diet, over exertion, lack of sleep, pending storms, humidity. But I know when I was combing this forum ever day looking for some possibility that I would get well occasionally someoone would come back and post that they did; and that really helped. Believing it can happen is important and also being realistic of expectations too. When I was bedridden I felt like if I could just get close to where I am now I would be grateful - and I made it. So I try not to get too ticked off with my remaining 5-10% deficit. Or the fact that I do have certain limitations and things I just won't do to avoid the significan return of POTS. Anyway, hang in there all. Best wishes for recovery
  5. I do. This was the drug that got me on my feet. I use as needed today (which is 3 years post flare) and about 85-95% better
  6. I improved significantly. It can happen. Most days I feel about 90-95% better. Occasional slides/flares that I can manage. Seems like my body has intense environmental sensitivity to food, temp, smells, light, endurance, - you name it and it can flare me. I've adapted some things, avoid some things but also challenge some things to desensitize myself. I've had to learn to listen to my body. For me - perfumes are a complete no; but exercise in a tolerable form is an absolute. Good luck!! Stay positive
  7. I had a lab test for the low blood volume issue. Honestly, I can't remember what it was...I was so sick at the time. It was around the time that I was having adrenal testing, aldosterone, renin etc..... The Doc I had hated me. He just thought I was nuts. Said all my adrenal tests were negative except that I had a little blood volume problem. Once I completed my lab stuff with him, I took my results and ran. I bought meditation CD's which helped me greatly in terms of emotional health. Deepak Chopra did a series with Oprah called "Perfect Health" - the best $40 I spent in 2013. I was so tired of co-pays. Good luck to you - the positive thoughts and slow meditative breathing helped me sort of re-set my system a little. When I flare I have a method to go back to - helps me get thru.
  8. I have a love/hate relationship with cardio training. I have a dislocated hip and I'm an amputee so running is challenging - If I do a ton of treadmill then I either have a short period of feeling really good followed by a crash or I just crash. I actually did way better with weight training over time - a span of 8 months or so until I felt consistently better in 2012. I also used other things such as hydrocortisone, some midodrine and seems like a big help was having a uterine ablation which significantly helped my anemia and suspected blood volume issue. My reason for POTs was suspected to be autoimmune (I am still not fully diagnosed) and potentially endocrine (also not diagnosed) but both with some low level positive testing. While my reason for POTs which I think was blood volume issues (confirmed) has been corrected and/or greatly improved my body still behaves like a dysautonomia case just not terribly tachy anymore. I still flare with other symptoms but they are more manageable as compared to elevated HR issues which I was not tolerant of at all. Maybe try some weight training?? Good luck to you POTLUCK. I've been watching you for a while and always admired your running miles.
  9. Some drinking helped me when I was more routinely symptomatic. It seemed to calm my ANS quite a bit. I realized that with dysaut symptoms I was drunk - quick. So pacing myself was/is key. Hydration too, I usually start with half a coconut water, drink 1:1 water to alcohol and finish the coconut water before bed. So if I want to include some drinking - this is how I do it. As with POTs there's always a management to it and sometimes a catch. Cheers!
  10. LooneyMom ~ You're a warrior. Kids shouldn't be able to have dysautonomias. I admire your fight for him and my heart reaches out to both of you every time you post. I am fairly recovered from a pretty terrible flare in Dec2011/Jan2012. New things creep up here and there however I function most days. There was a time that I was so sick and confused that a day like today was all I hoped for. I hope your son makes a full, 100% recovery and never looks back. xo
  11. 3 hard boiled egg whites with sea salt and a cup of coffee. about an hour later I eat a 100 calorie pack of sea salted almonds
  12. I'm still better -- usually around 90-95%. I typically can figure a reason for symptoms to creep back up - not enough water, sleep, storm systems, menstrual cycle, over exercising. I can usually correct with Midrodine and or hydrocortisone although I haven't used either since March of this year. I've actually had some significant stressors that didn't seem to set me back but I've been very mindful during those times to take care of myself. Stay positive all!!!
  13. I was diagnosed low blood volume, retest showed low end of normal. I have anemia. I was also told my RBC's die a little early (???) but I can't remember how or why that was suggested or tested. I had an endometrial ablation (I was significantly improved at that point but still easily suffering flares) and since have made even more recovery. I do believe low blood volume was/is the reason for my POTs but why I have low blood volume - I have no idea. I was 22 years old when I started being rejected to give blood, I was 25 when I was diagnosed with low blood pressure. Always prone to POTs-like flares but never like the 2009 flare and the 2012 which was the flare that brought me down. Hoping the ablation helps to always keep symptoms at bay. During the bedridden month it seemed like my body was unable to manage fluids. My body seemed to forget how to manage the system....I always felt like I had a bladder infection. I insisted I did - test was negative. The pressure and urge to urinate would be worse at night when I would try to sleep. Good luck to you Andy
  14. Happy for your son and for you. Seems like you guys have had a rough run. I only sporadically check the forum these days but I'm glad I saw something positive for your young man. Fingers crossed....good luck
  15. I took hydrocortisone through out my worst flare and got better. I don't think I would have made recovery without it.
  16. I was negative. But I did read a ton of info about Adrenal Fatigue in which those symptoms overlapped a little with mine. I did use low dose hydrocortisone thru my worst flare and it seemed to help. I still dose it on occasions during flares. I'm about 95% better but the heart of my flare lasted a good year. There's significant reason to be cautious when learning about Adrenal Fatigue and use of cortisone -- also most Endo's completely hate the idea and believe it's a made up internet disease. But most docs's believe POTS is a made up disease for people full of anxiety so it's like picking your battles. Maybe do a little reading and see if some of the info fits you or helps you.
  17. I'm with Katybug on the meditation train. It helps a lot. I also bought a book called Overcoming Adrenal Fatigue by Kathryn R Simpson which made a lot of sense to me. I felt for me that it was concomitant with my POTs/Dysaut. It talked a lot about the startle issue, adrenaline etc.... The medical community has not come around to the thought of Adrenal Fatigue and in bringing it up to a doctor early in my search for answers I was told I was nuts and it's dangerous to believe in AF. I thought the book was helpful and easy to read. Meditation has helped as well. Good luck
  18. 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
  19. 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.
  20. 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.
  21. 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.
  22. 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.
  23. 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
  24. 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.
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