Relax86

One time over the summer my husband and I were in a restaurant having dinner. I felt a little Potsy before we went in and earlier that day. Once seated I started to feel much worse. I was feeling like I might faint and really didn't want to slump over at my seat. I was trying to analyze my breathing, belly and lightheadedness symptoms. I told my husband I was just going to wait in the car. I apologized and told him to take his time and enjoy his dinner and I would be better off in the car. The entire time I walked to the car I prayed I would get there before dropping on the floor. I got in the car, and did a little breathing and within 5 minutes I was totally fine. I was like - holy sh*t!!! My very first anxiety attack. Felt very similar to pots, but completely went away once I got out of the restaurant. My POTs symptoms never go away until they are ready to go away. I guess the point to my story is that it's hard to differentiate, and besides trying to decide what you feel it just stinks to have this disorder which mounts the worry and frustration. For me, I try and keep in mind that neither will kill me. Good luck and be kind to yourself.

Alcohol settles my symptoms. But only moderation and hydration. It takes away my orthostatic intolerance, gives me a second wind, takes away my ear and neck pain. It's not a great strategy for POTs 7 days a week but I do have a drink most weekends. If I over do it then I pay - feel like a week long hangover. The trick is balance. I don't think I'm a hyper POTS. I have low blood volume, low BP and some positive autoimmune findings. I also present a little like adrenal fatigue which most docs in my area think is total crap. I just wanted to give you a little background on my version of POTs so you can see if you might fair well with an occasional drink. I'm symptomatic in different varieties anyway....so why not have a little fun. Cheers!!

We are all so much smarter after having learned what we know from the forum. If you've made a recovery before you can do it again. Stay positive and try not to let the fear and worry get ahead of you. You can do this

I get tan in Jan/Feb. People are always telling me I look like I've tanned. I usually tan once/week....and use sunscreen on my face so I don't have an island look in the middle of winter. But it's been 3 weeks since I've tanned and I look bronze like an island vacation girl. Hence, the classic "you don't look sick ~ you look great!!"

Functional for me means that I can complete my job; I have no other work related goals such as a promotion or furthering my education. I have put being driven completely on hold. I exercise most days in the tolerable range that I can. I hang with my kids (I'm lucky b/c they're 18 and 14 so more self sufficient) and take care of some of their errands with and for them. When I can't my husband drives me or does some running. I make plans with friends so I can try and forget symptoms. It does help. I space out things like a concert or a party or anything that means crowds or heat or walking distances. I significantly plan food, hydration....I can never spontaneously eat. I embrace the good days and pray on the bad. If I need help undressing or getting thru the grocery store I ask. None of this behavior is the old Tracy. But this is me today and I am trying to wrap my head around her and love her a little.

I usually have an exaggerated fatigue response to exercise and my post ex fatigue lasts longer than it used to (pre POTs). But the payoff is usually more days feeling closer to normal. That's just me - some of the forum people feel worse when they over do it. I actually feel a little better but it's a pay off of possibly a night of surges, and a day of having more breathing/lightheaded issues to get those extra good days. It's worth it to me at this point. Just hoping to stay away from my next flare.

right sided facial tingling. Comes and goes with ear pain. Hydrocortisone helped. I'm off HC now but I stay on advil (2 in am and 2 in pm) just to help with my perceived inflammation. Turns out I have I have some complement issues which show inflammation. So I think staying with the advil was a good thing. Guessing game

I originally got my HC script from a Dr who practices blended medicine (holistic with western) and she prescribed for adrenal fatigue. In the beginning I really did fit those symptoms to a T. My symptoms seemed to morph quite a bit t/o the year but main symptom was low BP, breathing OI which the HC seemed to help. Recently have some positive autoimmune findings and it looks like the HC is beneficial for that as well. So all around this was a good drug for me which I took seriously and limited as best as I could. It was very helpful and I actually feel better all around on it than off.

My symptoms all seem to start with ear pain. Once it worsened and started to run down my neck the POTs/dysaut sx really took off. My worse days start with ear pain. All ear testing turned out negative. Some providers suggested I have carotodynia which inflames my vagus nerve. The ENT was my first stop once d/c'd from the hospital in Jan 2012 and he told me I was not an ENT issue but may probably have lymes. My lymes testing has been negative but my autoimmune is coming up with some positives. Ear on fire this week

Don't let dysautonomia stop you. You've got spunk.

I've been slumping this week and haven't exercised in about 2 weeks. Every day I feel crappy I know I should try and move something but it's hard to push when you start feeling bad. I'm not POTSy but my other dysautonomia sx have flared a little. Tomorrow is my day for no excuses - I will move.

I see your strength. And I've had days that felt like yours; meaning I and lots of people here believe and validate all that you're going thru. You are stronger than you know.

Although I've been recently posting that I feel 90% better I had a day yesterday where it took 2 hours to get dressed and the distance from the car to the store looked like a mile. Life with dysautonomia is still tricky even once close to recovered. I have always maintained that HC helped my body heal itself and finally weaned late Fall of 2012. But yesterday I popped a half and my breathing issues completely went away. My recovered my entire day from that point on. I feel better today, as if I will NOT have to take another dose. I realize that there are repercussions to using HC but I also am starting to believe my quality of life is important as well. I don't know a lot about stress dosing HC. I do know that my body doesn't respond well to stress but different than anxiety. For instance, if someone drops a book on the floor and startles me - my HR jumps to 130 and stays there for an hour, for no good reason except it doesn't know how to shut itself off. My pituitary testing checked out find and so did my cotrosyn. Always wondered if the cotrosyn was a false negative because that Endo literally hated me and said I was crazy from the start. He did find low blood volume but said I skewed it myself.

New blood work performed in Dec found I have elevated Complement total (CH50) >60, and a low Complement Component C3C. The doc called to tell me that it typically means lowered immunity. While I spent the entire year of 2012 sick with POTs/Dysaut symptoms I never caught a cold and rarely got a fever blister (which is my normal response to stress and colds). She said she's not concerned at this point as I feel about 90-95% better. But I'm happy to be putting the pieces of this puzzle together even though I feel better. Not sure what came first POTs or Complement issues. We shall see.

Very helpful drug for me. There's a lot on this forum about people who used it for what symptoms and why. It might help you to search the forum to learn more because a huge cross section and some of the smartest people that I learned from are no longer routinely on here

This was me. I also used hydrocortisone. No more than 20mg/day. I would salt and hydrate before I even got out of bed. Eventually after a short period on midrodine my BP began to stabilize. I have no clue why this started and pretty much no real clue why it ended. It can happen though ~ good luck

I purchase my supplements from Pure Encapsulations. It's a brand I tolerate and absorb, I tend to not absorb vitamins well but this brand I do better with. Helped to correct vit D deficiency and improve my iron.

I know I take 2 iron pills/day and I'm still anemic. I take the first one on an empty stomach and avoid eating for about 20 minutes so no other food will lower it's absorption. Not sure if this is a good thing; I must have read it somewhere. I continue to be just under normal levels and I feel it. I eat tons of high iron food to try and make up for what my body won't absorb thru the supplements

I also got better with time and trying a few meds. Based on my symptoms the meds that worked for me were hydrocortisone, prilosec (I think I needed to tolerate the HC), and midrodine. It took a year. This is my second and worst flare. The first flare lasted a few weeks and was totally gone in about 6-9 months. This flare I was bedridden for about a month, finally figured out what was wrong with me and began to treat. It took a full year to get to 90-95% better. I was functioning by March/April but still feeling bad. By September I started to have more good days than bad. Another big reason I think I got better is that I halted all blood work by March. Too much blood work was causing so many symptoms for me and I had already been medically cleared of all the 'bad' stuff. So I decided to stop looking for a little while as I was pretty sure I was a POTs candidate. Good luck with your recovery ~ it can happen.

I got better....I think I'm calling my improvement 90-90% these days. I occasionally have an off day where I'm aware of symptoms but nothing that stops me in my tracks (like this time last January). Last night I was in bed by 8pm I do require rest when my body says so, I have made some changes in diet, hydration etc....things that I figured out in this last year that my body needed. I mentally get susceptible to worrying about POTs returning and that puts a damper on my recovery. But don't give up ~ it can happen.

When I have a provider that tries to steer me in this direction I come to this forum. I see the people here desperate for answers and anyone's small or large success story. Do we have stress?? Sure we do b/c most of us have had our lives taken from us without warning or reason. Did that cause me some anxiety; absolutely. There are more than a few people who can describe my symptoms to a tee. We absolutely have a misfire and figuring out the answer is not easy for these docs so they go to what takes the stress off of them and puts it onto the patient. I got lucky that I found a few things that helped me move out of my flare. Hopefully you will find pieces to your puzzle as well. POTs is real and there's multiple forum members here that demonstrate proof of that.

Achilles I got better. I had my first POTs flare in 2009 - lasted about 6-9 months. I was better before I figured out it might be POTs. I stopped snooping on this forum then put it behind me. I had another flare in Jan of 2012 and it was a bad one. It's taken me a year to get better but I did. I'm about 90% improved and happy with my progress. I always hope to get to 100% where I'm not always thinking of a relapse but I'll take the 90% for now. I'm 44 yo Female. I had a lot of bloodwork after my flare and I think that made me worse. I also delayed trying to exercise as I was thinking something was wrong with me and I think that was a mistake for me. I'm a low BP POTs and now I know that midrodine helped and hydrocortisone helped. So I'm learning about my response to POTs flares. Do your best to stay optimistic. Read this forum and watch for the people who have come before us and educated themselves. The information relieves our systems to mentally know we are not alone, we are not crazy and we are not dying - because POTs feels bad and scary. Celebrate baby steps and improvements even though they might be temporary - progress will come. For me the sooner I pursued activity and exercise the better I was. When I over did it I did pay but the payoff was greater. Good luck.

ZAP: Prescribed 10mg at 8am and 10mg at noon...but I played around with the dosage until I found what my body liked and actually that changed over time, so it was difficult to keep up with. But originally all of my symptoms were terrible in the morning and improved by the evening (indicative of adrenal fatigue). I can't remember all of my symptoms/testing at the time but I had low electrolytes, decr blood volume, anemia, vit D deficiency, OH which resolved by around 4pm, tachy when upright, shortness of breath and who knows what else. I felt terrible. I felt the effect of the HC within 15 minutes of taking it and it helped tremendously. I went off of it after 2 weeks to have a cotroysn test which was negative and tried to stay off; but symptoms returned with a vengeance so I resumed the HC until I felt that I was strong enough to wean. I weaned very slowly and without difficulty. Overall, I like my body on HC better than off but I'm trying to stay off of it.

I too originally had a Doc suggest adrenal insufficiency. She prescribed hydrocortisone to let my adrenals rest and get stronger again. It helped although all my other providers went ballistic due to the possible side effects of Addison's. Just wondering if HC was offered to you?

I'm the same....I may consider stopping my cycle thru some sort of birth control or an ablation which has been suggested. I have watched the forum for ppl who tried these options and so far there's been no one who has said stopping their period made their POTs better. But at the end of the day if I had one less thing to deal with it might be a good thing.