Relax86

I also don't have feelings of panic or anxiety except right before I faint. I have both syncope and pre but pre way more often. Like Momto, it gets better as I get more experience with POTS. Early in my worst flare (maybe around Feb 2012) I read a post from someone on this forum that said something like this: I no longer check my BP or HR as it's pretty meaningless and I know it's always going to be weird for different reasons at different times. He also said in terms of socialization that he went out and hung with friends despite symptoms b/c he was going to feel like crap anyway so why not at least enjoy time with friends. Those statements meant a lot to me in terms of how I was going to move forward. Once I was no longer bed bound I decided to begin to socially circulate...even for an hour with friends. It lifted my spirits to be back in my circle even though I felt pretty awful. After time I was able to turn 1 hour into 2...etc. And because I was cardiac cleared, I try to not check vitals unless I'm feeling super crappy. I feel my HR pulse in my neck, I don't need to take my pulse to know it's outrageous....most of us can feel POTs running thru our veins or not running as it may seem. Anyway, maybe those 2 thoughts might help someone and impact them positively like they did for me. I have felt so terrible from this flare and the reality is: I wake up every day anyway. So I might as well try and go out and live!!!

I can tolerate a little alcohol but not sulfites/sulfates....so never any red wine. I flare immediately with condiments, anything pickled, soy sauce....etc. Maybe some of you are also sulfite sensitive?

1 morning cup is good for me. I used to have 2 but the second one hurts my belly. I typically like the second around 1 or 2 pm but I usually just drink half the cup. I think it's a mental thing. I also feel crappy with dark organic chocolate. Recently bought a bar w/salt and can't seem to tolerate a square. I do love my Hersheys kisses though!! I watched the thread where this group was chatting about pseudoephedrine. I still don't really know what type of POTs I have so I'm cautious about jumping on the bandwagon of other peoples treatment. I did start to use some Loratadine which is Allegra....not the D....because I seemed to be having more reactions to food, more often. But please don't take away my coffee!!!!!

I also never had anxiety issues prior to POTs. My first flare occurred when I was literally on top of the world in terms of work, my schedule and general well being. The second flare occurred gradually at first and then stopped me in my tracks. I was in a stressful job and feeling unhappy therefore I began to look as stress as a provoking factor. I have questioned myself at times and jokingly called myself a lunatic. My body does not handle stress well at all. However.... I was 95% recovered until this past Thursday night when I had a totally unprovoked flare on the way home from work. Followed by an evening that felt like an autonomic storm. I had no provoking factor - not heat, cold, food, stress, light, noise, meds or the lack thereof. I am now functioning at about 60% and using small doses of HC. I checked "other" on the question "does stress make your symptoms worse" because I feel dysautonomia inhibits my body from coping normally to stress but not that I can't handle stress. And while I'm pretty bummed out that I flared again after barely enjoying life at 90% recovered I have absolute confidence that this isn't an emotional disease for me. It's a light switch and I have no clue who controls it.

Diet seems to mean everything and also nothing for me. I have had a POTs flare settle with a few hersheys kisses and a few sips of coffee also a few bites of brown rice with chicken. I've always had limits with food due to left flank pain. I have in the past eaten so clean that both my good and bad cholesterol where too low. I know lowering my sulfates has been helpful. I've always been a clean eater except chocolate (candy, I don't like baked goods or ice cream) and beer. I do love my drinks on the weekends. Regarding alcohol, it helps my symptoms but there's a number of drinks I can do for symptom reduction and too many make me feel worse. I have always followed Dr Andrew Weil's principle of eating the colors of the rainbow every day. Post POTS I added coconut oil, kale smoothies, and lemon in my water. My girlfriend and I were chatting this weekend about how mindful we are about food. It's incredible to us that we eat pretty clean and still have such health issues. We both have friends that live on fast food, meal skip, and generally make all the common mistakes and never give it another thought. Crazy!!!

A little bit of chest pain is a new symptom for me. I'm sorta thinkin "really???????" I did aaaaaaallllllll the other symptoms with a certain amount of charm. So now I'm gonna have some chest pain too? All of my cardiac work up was clear, so I don't have to worry. But it's annoying and forces me to slow down or stop what I'm doing.

I tried a few sessions of acupuncture and didn't notice a difference in my POTS. I wasn't sure I had given it enough time. I think I had 6 sessions. The table was flat and my BP drops in supine so that's mostly what I thought about during treatment. I should have asked for an alternative position. I one day will return to acupuncture because I like the concept. It just didn't seem to help my symptoms at the time.

Yes I have a heightened sense of my symptoms. Passing out and knocking your head against the concrete will sometimes make you analyze how you feel. I pretty sure I know which came first and I won't apologize or concede to any Dr for my worry. They either get me or they're gone. Makes getting treatment easy. Hehehe.

Happened to me Thursday night driving home from work. Totally unprovoked. Again Friday morning and from about 230-530 in the morning last night. Unsure why. Previously had been about 90% better. The flares are taking it outta me. If I'm being honest, I don't believe it's ever going to get figured out - it's just what my body does. I don't think it's dangerous because I always manage to get thru. I've had all normal cardiac work-up with flares caught on monitoring - all benign. I've struggled this week with light-headedness, ear and neck pain ®, being SOB, pre-syncope, electricity in my veins. I think the answer for me is to go to what works, try hard not to worry. Learn to live with dysautonomia for now without answers. It's a struggle. Especially after being about 90% better for the last few months. I will get better again. Despite the worst of doctors who think I'm crazy or the best of doctors who just don't know what to do with me - at the end of the day I have the forum. The comfort of that always puts me in the right direction. Good luck ~ try and ride the wave.

I strongly felt like I had adrenal fatigue in my first few weeks of the worst POTs flare. I had a east meets west Dr who agreed and prescribed me HC. I bought what I thought was a good book on AF by Katherine Simpson called "Overcoming Adrenal Fatigue". I wasn't 100% sure on what my beliefs were but my symptoms (specifically being terrible in the mornings and feeling near normal by evenings) matched quite well. To be sure I saw an endocrinologist who was appalled that I would buy into this theory and he was super mad and arrogant. He did however do the testing to rule out Addisons, and he did test my blood volume. He said my adrenals were completely fine and to stay off the HC (which I didn't) and he said my blood volume was low; subsequent retests put me into the low end of normal range. My symptoms evolved t/o the rest of the year to look more like dysautonomia and less like POTs. It's 17 months later and I feel about 90-95% better and I'm not using any prescription meds at this time. I personally feel that adrenal fatigue had some merit for me. And some of the things I learned from the book helped me. I still don't think I have fully functional adrenal glands; but I'm much much better. In the heart of my flare I should have sent away for the saliva kit, but I have good insurance and was a little pressed for cash so I stuck with tests that could be covered by my lab. Good luck to you and I believe everything is worth some research.

Ear pain has been one of my constant symptoms. ENT cleared me and said I have Lymes or TMJ. The pain level has been unusually high in the last week. No clue why

I supposedly was diagnosed with low blood volume. I had testing that determined (I think) my aldosterone levels were below normal levels. I can't remember to be honest. I know that there was a problem with ald and renin. They did take a lot of vials of blood and inject me with something intermittently as well. I know it sounds crazy that I don't remember the test or the exact results but it was in the midst of the worst of my flare and I was barely functioning. The test was performed in a hospital. I finally did get better. I used Midrodine short term and I also stopped having blood work, which meant a commitment to stop looking/having testing for a little bit. I used salt and water to increase blood volume. I also had a positive ANA for scleraderma which was later retested to be negative. The last positive test I had was a pretty low C3 complement test. From what I understand means my immune system is a little compromised. I also used hydrocortisone throughout my flare which really seemed to be my lifesaver. I wonder if the use of HC lowered my immune system leading me to have to low C3 test. Overall, I'm getting better but it took a little more than a year. Looneymom - Good luck to you and your son.

I woke up at 3 am, SOB, lower BP, a HR of 100. R sided headache and ear pain that won't stop. I peed went back to bed and assumed I would wake up later. Which I did. The weird thing was that I had double vision for the first hour of the day, eyes swollen and lightheaded. It's just that kind of Sunday in the dysautonomia world. Reading the forum supports me. Medically I always check out healthy so it doesn't seem to make sense in my case to call a doctor. I think food is the culprit for me these days. I just wanted you to know Tachy that you're not alone. Take care, and feel better. ~ Tracy

I'm the same. Recently feeling like food triggers or increases my autonomic sensitivity. I don't think the cause but I don't think helpful when I eat the wrong things. I have always believed there is an adrenal component for me, despite the fact that my testing was normal.

No propanolol for me. I took fludro for only a few days. Spiked my nighttime BP, gave me terrible headaches. Didn't change my tachy, lightheadedness, shortness of breath or fatigue.

My complement testing was high and my C3 was low. I was told it was not alarmingly low. My PCP told me to forget about it. It's really difficulty to take that advice. But the reality is that I am consistently feeling better. So I'm going to tuck it in the back of my mind.

I also had this problem when I was in the heart of my flare. I don't know what type of POTs I am/was. I had low BP and eating made me lethargic and pre-fainty. It helped for me to have very small meals and I stuck to items on the low glycemic index, no sauces or gravies. Foods that digested quickly seemed to make symptoms worse and foods with tons of chemicals/additives made it worse (and I still avoid sauces and gravies). Good luck to you Kris.

Between 2009 and 2012 I became symptom free. So far I feel 90-95% better but usually have some symptoms for some part of every day. Can be very mild to moderate but I'm not at a point where I can't do things or avoid much ~ I can push thru symptoms. I am very grateful for symptom free days and also for the fact that I'm 90% better...I still hope for full recovery.

Joann, how many vials of blood did they take at the Cleveland clinic? I have noticed a pattern for me that after blood work - sometimes a day or 2 later my flares have flares. I feel like my blood is a gallon of milk and I'm always running 3/4 full with a little hole in the bottom of my container. Blood work, menstrual cycles always deplete me and it takes double the time to get well again. Just a thought. Good luck and feel better soon

Dave ~ your symptoms that you reported on April 18 th are pretty much my symptoms from Spring to Summer of last year. I was also positive for low blood volume. I just wanted you to know I did get better. These days I'm calling it 90-95%. Good luck and keep moving when you can. I know I mentioned it before but bloodwork combined with pretty wicked menstrual cycles always set me back. Keep up with you research and keep on moving when you can. Good luck.

I think the main thing for us POTs/Dysaut people is that we feel terrible. Our functional level is really reduced. Other people that feel well, for lack of a better term 'normal folks' don't typically take their pulse/BP. I don't mean anything by that except just as an observation of myself. Before POTS I never checked my vitals and never had the urge. Also, and just speaking of myself here....but my 19 year old had to check vitals for a project and then my 15 year old did it as well. I was really surprised at the variation and the numbers. It wasn't what I expected. The lesson learned for me was that it's a slippery slope for me to think of their vitals as a marker for my expectations/health....as they both are young girls who feel great. I personally used to get very hung up on my numbers but after a year, and considerable improvement I try and focus on how I feel. I know it seems easy for me to say b/c I'm in a bit of recovery. Mostly, I hope you don't worry too much as we all have so much to worry about. Good luck to you.

I never found my cause and I got better. I have my suspicions but no concrete answers.

After vomiting the heart rate will rise and especially when kids or anyone gets dehydrated. Kids can feel dizzy as well after barfing. My 19 year old has finally told her old Mom that she agrees that milk makes her stomach hurt. I've been saying she's intolerant for about a year. But what do I know?? Good luck with your little girl.

I'm not currently taking any meds (regularly, that is). So my breathlessness is not from that. Sometimes food or chemicals trigger it, or carrying objects. The symptoms comes on like a light switch and I don't always know what triggered. If it gets too bad where I think I'll become fainty then I take a half of a hydrocortisone. This really helps me with breathlessness and then the concurrent high HR. Good luck

Recently noticing some foods that flare my POTs symptoms. Salad dressings, soy sauce, BBQ sauce, some but not all chinese food. I'm pretty sure that the culprit is nitrates. Anyone else have any thoughts??