Relax86

DKD ~ I had the same lung test which came back normal. At the time I was having SOB, tachy, just didn't feel like I had enough air. Couldn't seem to catch my breath, significant fatigue with minimal exertion. My testing was normal. So I didn't push to look harder as I just chalked it up to dysautonomia. I did get better. For me, low doses of hydrocortisone significantly helped my breathing and eventually I weaned the HC and stayed off. I would see results in my breathing issues within 10 minutes of taking half of a pill (5mg). I had the same symptoms in the shower and still have poor tolerance to heat and humidity. My BP and HR are now closer to normal. I'm unmedicated at this time but I still get a few triggers and symptoms. I had a blood test that suggested blood volume issues so I committed to stopping most of my bloodwork. I was able to make that decision b/c most of my important testing was behind me (The lung function, cardio work up, MRI's, and numerous rounds of blood work that found just a few things). Once I stopped the blood work some things improved. Others improved with slow progression of exercise. Other symptoms improved with time and now I meditate. Good luck in finding the solution for you. It can happen.

Once I read a poster say that for him checking vitals didn't mean anything to him b/c with dysautonomia as a force then stable vitals would not really happen. That made sense to me and I also stopped checking. For me, sometimes they were fine when I felt terrible and sometimes I'm tachy with low BP and don't really notice. I do other things to control symptoms like drink water, a light seated exercise routine, listen to songs that make me feel safe or remember something happy but lastly meditation has really made a difference. Meditation has helped my symptoms and also how I feel about dealing with POTs/dysaut on a daily basis. I read the forum but I have to limit it sometimes to stay positive. And other times it really helps. And also I try and post fairly often that I am about 90% better because when I was bed bound it seemed like all I wanted to hear is from someone who did get better. And I did. I'm content at 90%.....100% would be nice too. Good luck to you. You can feel better....believe it!!

Meditation significantly works for me. And I also left a management job for a staff position which helped quite a bit. It's less money but less stress and requires much less of me. Besides my inner struggles for self worth the job I have now works for me. I just have to remind myself that my title is not me and this job allows me to work at all. My current job is going to end in the next (guessing) 4 years. I'm not sure my plan at that point. I might be ready for a break but unsure my budget will allow. There's time to plan but I'll also have 2 in college. I would like to consider disability at that point but I worry with the current market and state of the union if there even will be disability available at that time. Also note that I'm at amputee with a congenitally dislocated hip - I'm not riding out on disability on POTS alone even though at times I was sick enough. I think my hip is going to give out before my BP. I'm way off topic here but my point was that the emotional rest although not my cause did help in my recovery since my coping mechanisms for stress (despite me thinking I was strong minded) are now broken. I loved my adrenals in my 20's and 30's!!!

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Ask - I immediately went to a site and started shopping for the sheet. I have no problems giving anything a try. Thanks for the information. I know there was another girl on the forum who did the 'earthing' thing. I was sort of watching and waiting. I'm plateaued at about 90% improvement since my flare in Jan of 2012 and would love to tip that number to 100%. I do tan about 3 times/month because I don't spend much time outdoors. The NJ humidity is a trigger for me but my Vit D is low. I would try the earthing sheet in a heartbeat. I easily paid that amount of money in drug, Dr, hospital and ER copays - most of which didn't get me better. My body still feels the dysautonomia brewing. I can sense that it's there.... always waiting for a trigger to fire it up....of which there are many. If the earthing sheet quiets or kills this thing I would be thrilled. Thanks for your update.

Dave ~ that's a tough road you're on. I just wanted you to know that I did get better t/o flares and set backs. Hang in there and believe it can happen. Also, I got better with very little medical intervention since most of my testing came back negative. I don't have SFN but I had a few other things pop up. Mostly, just do your best to stay positive.

A staple and safe food for me

Congrats Issie. I've been watching your posts for the past 2 years. I know the info that you've shared in the past has been helpful to me. So it's nice that you're feeling better and finding the pieces to your puzzle ~ Tracy

Dave I originally had a positive ANA, elevated complement levels but a low C3 which suggests compromised immunity. My autoimmune doc said it was something to watch. During my Complement tests my ANA was repeated and came back normal. So I thought that the reason for my POTS at the time was some sort of autoimmunity. Early in my flare I was told I had low blood volume but repeat testing showed that to be normal. So the take away for me was that testing at this flare was just suggestive. Im not looking for another flare to confirm anything...haha Lastly, I'll say that in 2007 which was my first notable flare (meaning bad enough that I was fainting, spent a day in the hospital, found DINET etc) I asked my primary to give me an antibiotic for ear pain. That flare was only lasted a few weeks for the bad symptoms and a few months for the mild. This flare of 2012 lasted the entire year ...plus. I'm at about 90-95% better and grateful. But I didn't recover fully this time. Unsure if it was the absence of the antibiotic, the major gamut of blood work I had in the first 6 weeks that killed me or that subsequent flares will be worse..... Good luck on your complement research. The info that's out there is harder to find. Just wanted to share my details that seemed to mirror yours Tracy

Try and google Badger Care. I think that's the name of the program in your state that offers health insurance for children. Try this number as well 1-800-362-3002. Let me know how it works out. Good luck

It worked for me....at least it was one of the things. I think it is a leg muscle issue in needing to pump the blood and also a nerve issue in terms of misfiring. But I think exercise at a pace that works for you is definitely neuro re-training. I did the same thing with noise (radio in the car) and light....essentially building my tolerance up slowly over a period of time. Stressing my senses but not sending them into spazzz-town. At the height of my flare I was pretty bed bound, in the dark and needed near silence. The re-training works; the more I catered to symptoms the more sensitive I became. Good luck with your attempts. Be patient. And don't give up!!!

What state are you in? And congrats on your good news!!

I have vision problems without being on meds. I think pupil dilation is vagal nerve. I have floaters, sharp shooting pain in the corner of my eyes on occasion, blurry vision. Eye Dr said I lost 40% vision in my left eye during flare. And most of my symptoms were right sided (ear pain, feeling like my carotid on the right was on fire or tight, feeling my pulse in right side of neck)

I'm between flares...or maybe just better...but I am functioning at full capacity with baseline symptoms. Today I laid down in the middle of the day after being out in the humidity and had a spike in HR, and pooling into my hands. It went away after a few minutes but it seems that slowing down for us doesn't mean that the message gets to our circulatory system.

The benefit of the cardiac work up for me was that my palpitations were found to be nothing therefore I don't have to worry about it when it happens. I can breath thru it and try to relax. I do believe most states have programs for children under the age of 18.

I had the Novasure ablation on June 3rd. It was done under anesthesia. Very easy surgery. Understand I am out of the main part of my flare right now, but I will tell you I would have had this procedure at any time to stop the bleeding I was having. I am a low blood volume POTS/dysaut and unconfirmed autoimmune and started getting severe bleeding at age 37ish...I'm 45 and there was no sign of slowing. No matter how much iron I gobble or when I take it or with what foods/empty stomach I could not keep my levels up. And my ferritin was always low too. Since this procedure I've had very minimal spotting, no side effects, the same hormonal changes and no flare in my POTS symptoms. I'm a little flared currently which I think is from the dramatic increase in humidity in the past 2 days here in S Jersey. At the very least the chore that it was to have a period so heavy is behind me or so I hope. And just like Liz said this is permanent birth control intended to reduce or stop periods all together. Good luck with your decision.

Brain fog wasn't one of my main symptoms. I was low BP and high HR. I was a fainter, and lightheaded and SOB. I don't remember brain fog being my issue...but it's telling that I don't remember that...lol I am one who used hydrocortisone which is a controversial choice and sometimes not supported by medical professionals. I felt like some of my symptoms mirrored adrenal fatigue and I somewhat plotted my recovery on that philosophy. I was prescribed fludro early on which i didn't last more than 2 or 3 tries. I resisted Midrodine for months but finally tried that and that helped tons. This flare started Jan 2012 and took a full year to see consistently better days. I have had some mini flares in 2013 but getting few and farther. I had a bout of POTs in 2009 which was mild compared to 2012. The 2009 bout seemed to disappear on it's own. At that time I found DINET but in a few weeks time believed that I was fine and dysautonomia wasn't me. The 2012 flare pretty much put itself on the map so to speak If I flare again I will not hesitate to go back to using HC and if my BP drops I will jump on Midrodine right away. In terms of meds I usually need the lowest dose possible and I sometimes split those. Hope this helped. Always remember, you can get better and also figure out lifestyle modifications to make life work with POTs. I still pay close attention to my body. But try to not ruin my healthy time with worry. Recent addition of meditation has brought me to a less intense place. Good luck!!

Welcome and good luck with pharmacy school and getting some help with your symptoms. I'm in Jersey also, but South near the shore. I don't have an autonomic specialist but my family doc gets it. I got better --- about 90-95% right now and very minimal symptoms since little flare in May. Don't give up and try to stay positive (which is difficult). Most of us POTs people are very driven individuals which seems to contribute a little for me. The less I could accomplish the more irritated, worried I became. Hang in there....and good luck

Hi Hanice...wine is a huge trigger for me. Diet wise I do the same things every single day.... egg whites, beets, bananas, smoothies, kefir; brown rice (Trader Joes), spinach, chicken, spiniach (or sliced london broil), chicken again, salad, broccoli, tomatoes, more brown rice and beans. My husband is puerto rican so we do a ton of rice and beans, we just cut out the seasonings. If I narrow my diet down to the above - which I'm fine with - then on weekends if I have a little chicken wing, or 1-2 beers, etc...I'm ok. If I eat processed food, salad dressings, anything pickled, then I flare. Can't do red wine at all, soy sauce - or anything that makes your taste buds think sour or tang. As far as sinusitis, that's not my issue. MRI was clear and I don't really have those symptoms. I think my head pressure comes from cerebral hyper perfusion. That symptom has gone away since stabilizing my iron, ferritin, D, and exercise. Good luck

Trice ~ I'm wondering what your symptoms are....seems like - and I could be wrong - but people who had similar POTS symptoms as me seemed to improve and be triggered by my same 'stuff'. I'm a low BP pots. I'm in a little remission right now and that's nice. But I previously was bed bound and had pretty severe days. I also never had pain, and never had terrible HA's as a symptom. I was a light headed, fainter, with an elevated HR, ear pain, head pressure (like airplane cabin pressure), digestive problems (tachy, pain - never bowel), and felt like I never had enough air. I often thought I would die in my sleep. Careful choice of exercise helped me, Midrodine, Hdrocortisone (life saver), salt and water, decreasing sulfates/nitrates in my diet all helped me as well as small meals. The more sedentary I was the worst I felt - now this rule isn't for initially - because initially I was bed bound. But there came a time where I had to move and the more I tried the better I felt. It came with a ton of uncertainty and days of back sliding too. Lots of reading on the message board helped. Specifically finding people who seemed to have my symptoms. You can probably just look up my profile and see my history. To be honest I don't remember everything in the last 18 months but it took a good year to pull out of it. I'm at about 90-95% improvement. But I think about relapse daily. The mental game does provoke symptoms for me. I'm not saying that this is all in my head, b/c that's totally untrue but that stress is a true trigger for me. Good luck with finding some strategies. Celebrate small successes....stay positive. Good luck. Tracy

Also over sensitive to meds I waited 3-4 months before I decided to try this drug. I would have taken it way sooner if I had known how helpful it would be, It worked really well for me. Side effects were nothing compared to POTS sx that came with low BP. I only needed 2.5 twice a day. And it does leave the system pretty quickly....3.5 to 4 hours for me. Good luck

I walked away from one job in which my condition made it dangerous for others (nursing home/long term care facility) and I have fainted at work with my current employer - so yeah....he does know. I'm not sure how I would handle new employment. My guess is that I would exercise my right to keep it quiet until necessary or obvious.

I did increase my salt intake in the beginning of my flare. It was mildly helpful in temporarily increasing my BP. Truth be told once I tried Midrodine I found that worked so much better for me than salt/water. Overall, when I crave salt I use it, but once I stop craving it I hold off. Seems like once you have dysautonomia you seem to know what your body needs. But I did try it as an option for symptom control. Helpful but not a solution for me.

At the start of my 2012 flare I usually felt better in the evenings. I would go to bed, sleep all night and wake up with all the symptoms returning again. I was also negative for my adrenal testing but I did start to use hydrocortisone for Adrenal Fatigue (which is allegedly considered an internet diagnosis). Adrenal Fatigue felt relevant for me and the treatment did make a difference. As I moved into recovery I actually stopped noticing a distinct difference in my days vs evenings and seemed to have struggles t/o the day or good times t/o the days. Later in recovery I started to have nighttime adrenaline surges during sleep....usually within an hour of falling asleep and sometimes again around 2-4am. I think feeling better in the evenings can be typical for some poster's here...and not just the people who feel they fall into the Adrenal syndroms.... Good luck ~ Tracy

I did food elimination not by choice but during my biggest flare I could not eat anything but brown rice, beans, very little chicken and some scrambled eggs (no milk in the eggs). Food elimination changed nothing for me. About 9 months later I started noting food triggers. I don't believe food triggered my POTS but I believe I had some existing sensitivities that were increased as I recovered by POTs. My triggers are: sugar substitutes, wine, soy sauce, and generally sulfates/sulfites, nitrates. I was a pretty clean eater prior to POTS, always ate the rainbow of colors in my diet, very little processed foods, and just by choice. Today I have to stay away from most salad dressings, and seasonings as they bring on little flares. I'm currently feeling well. Sometimes I call it being between flares - can't tell if that's realistic or negativity....lol...but I'm happy today. Good luck to you all and especially to your son LooneyMom - there's just no reason for a kid to go thru this. Positive vibes for him. xx