Altruism

Amy (and you of you, guys), I truly appreciate your care and support! I couldn't have survived without them! I'm taking a BB and starting an SSRI next week. So far nothing helps my symptoms, but at least I learned a lesson - I should never take 1/8th of Klonopin and then another 1/8 an hour later - it has to e taken altogether (like 0.5 or more), cause it has long half-life and then it can actually control my anxiety. True. With 0.25 3 times daily or 0.5 twice, I seem to be doing a little better. I still get bad attacks, but they are nothing compared to the day I posted the thread. I hope BB affect anxiety by blocking NE too, so I truly expect an alleviation if not an improvement.. Thanks again! Love you!

You're lucky to have them controlled... I can't control my HR and BP no matter what I take. You should discuss with your doctor other treatment plans involving blood vessel constriction if you think you're pooling.

I don't like the idea of being considered functional despite feeling like death. Ugh.

My doctor thinks I can get functional again. She keeps saying I'm doing so bad right now that technically it can't get much worse and should only improve with time (I truly hope so!) So, I wonder what functional for a POTS person is - taking care of myself? Showering without a stool, shopping and having some social life? Working full time and doing all the things I used to do? Working out, travelling? Define what functional for your type of POTS and severity of the illness means, please. Do you feel functional equals "controlled symptoms and almost normal quality of life" or simply "not bedridden" but still symptomatic and miserable?

Bebe, what confuses me is that your HR is fine during the surges. Mine wakes me up and is my worst symptom. It goes way above 180 and stays there for a couple of minutes. Wakes me up every night, it's so scary and horrible. I wonder if we have the same thing..

+1 No pooling in feet, but I'm pretty sure I have severe abdominal pooling. Every morning when I sit p in bed, I feel that draining sensation, my abdomen gets painful, bloated, colicky, then I feel like I need to have a BM (TMI). Do binders help you? I wonder why they don't help me. I wear Bellefit pregnancy girdle and binder and it hurts, but it does not make me feel better.

Sorry you had to spend the day in the ER! Do you have to got the serum tryptase test done only when having an episode (rash, flushing, etc)? I thought I could go to my PC and make him order the test anytime. Am I wrong?

You're all absolutely awesome! I love you! I saw my neurologist and she said she does not think it's possible to experience so many and so severe side effects from Propranolol on such a low/pediatric dose (2. 5mg). Since my standing NE is very high and my QSART is negative, it means I have hyperadrenergic component but no neropathy, so my doctor thinks Propranolol is the best drug for me and insist on giving it another try. She attributes these symptoms to probable postpartum anxiety/depression. How could this be? So I'm not allergic to Propranolol, just sensitive to the side effects and then I overreact on them because I suffer from PPD? Does this make sense? I'm torn.

Exactly like me! Hyper component with severe adrenaline surges! What helps you?

Really? Most Hyper POTS have small fiber neuropahy? I have very high standing NE 997 but normal QSART. Am I that weird?

I get them too! Butterflies, hot and cold waves, BM, tremulousness.. Ugh, I'm so done with this POTS.

Do you guys get adrenaline surges while sleeping/ resting/ being supine? My doctor thinks if I'm supine it's not a POTS symptom and I never get them while upright (maybe because I spend only a couple of minutes daily upright)? I'm trying to tell the difference between an anxiety attack and an adrenaline surge.

Lissy, your response made my day!!! So it is possible! Even the worst pregnancy POTS can be reversed! Can' wait!!!

Mine is a pregnancy onset that got SEVERE immediately postpartum. A very interesting idea..

I feel blessed to have found this forum and all of you!! THANK YOU!!! I'm not doing better, honestly, actually I feel worse. I get uncontrollable anxiety adrenaline attacks that are so severe ... I took 0.5 mg Klonopin and it's not helping. Should I up the dose more? I don't want to go to the ER, they never help me there.. IS THERE A TYPE OF ANXIETY that Klonopin cannot take care of? Even if it comes from my POTS and ANS, it should still be able to take the edge off, right? I need help urgently and I trust this med, so I'll take some more maybe. I'll respond personally when I feel a tiny little better. Thank you for being here for me...

Please, help me keep going. No meds help. No light at the end of the tunnel. I'm sad and depressed. Florinef did nothing for me but made me dizzy, metoprolol did not affect my hr at all, propranolol is making me feel even worse... I am a square peg in a round hole and fit no criteria so far, compression stockings, salt, water, clonazepam...nothing helps me... I feel so tired, exhausted, have horrible adrenaline rushes, feel like I want to crawl out of my own skin and have 0 control over my body... I want my life back!!!!! I can't even get up and shower.. I'm tired and my eyelids are dropping, but I can't sleep. I feel like someone else is in my body. Clonazepam does not help. My newborn is constantly crying. I'm at my wits end Why me?!!!! Why us?!!?! What the **** did we do to deserve this?! And even if I fall asleep, I keep feeling worse and worse on the following day...Why should I keep trying then? And I'm in USA, so far away from my hometown, my home country, my friends from my childhood.. I don't want to die as an immigrant and I can't even go back home cause I can't fly. I'm so lonely and pathetic... I need to stop crying, my head will explode. I REALLY want to get better!!! Some people are not type A personalities an are ok to spend time at home & on the sofa. Not me!!! I love life!! I love life, I need to go out frequently, now I can't meet my friends as my brain fog is severe and I'm so tired and it makes no sense to meet them and listen how fun there lives are while I'm staring at the ceiling all day long. Then I have a good day. God, I hate good days!!!!! That means another bad week is coming and I have a good day to remind me how sick I am. A good day means I can watch TV, recumbent bike for 30min, walk at home a bit and nurse my baby. Yay me!!! What kind of a life is this!?!!? People on this forum live like this for... years? Decades?! How?!!?!?!!?!? I cannot do this, you're all so strong!!! I need the pain to stop and to feel like my old self even for a while. I'm losing it.. I read you blogs of your bad days, of mommies who can't take care of their children or do parenting from the sofa... I can't!!!!! I'm not so strong to watch someone take care of my child while I can't even find the energy to drink water. I can't learn to live with my biggest fear - uncontrollable anxiety, adrenaline rushes. I feel like I'm 99 - so old and tired. My soul is trapped in this terribly sick body. Cried my eyes out while typing this. I know I need help but NOTHING helps me!!! No med, no compensatory mechanism, nothing.. Maybe I am dying actually. Maybe I'm even dead. This is not the life I wanted.

Thanks for your responses, guys! Day 2 for me is even worse. I took 2.5 mg in the morning which is way below my 2 x 40 mg recommended dose and I crashed 2 hrs later. I'm EXTREMELY tired, POTS+ tired, dizzy, feeling like I'm drunk and very stupid and feeling depressed... I can't stop crying... I feel worse.. is anything ever going to help me? I can't keep living like this, this is not living, this is ****..... (((((((((( I'm hopeless, really. I can't ive with a newborn crying, me neding help and husband at work in a foreign country. I'm soooooooooooo sick and tired and desperate and nothing helps.... ((((( Florinef, metoprolol, propranolol, compression salt, water.. nothing helps...

Thanks or the info, guys! When will the short-release form leave my body? I feel HORRIBLE today! Dizzy, tachy, VERY tired, brain fogged and much worse than yesterday... I want it to stop...

On the bright side, 60% recovered/got better in less than 2 years! Keep voting, guys!

Thanks, Naomi! I'm sorry you are hypersensitive to meds. I think I am too, I've been cautious my entire life and have always had the rarest side effects, etc. Let's hope more people will chime in

I was on Metoprolol for a while and it did nothing for my hr and bp. Now my doctor said she thinks I'm hyper POTS (still waiting for some more test results), but in the meantime she put me on propranolol. I've only taken 2.5 mg last night and 5 mg this morning which is a pediatric dose compared to the 2x40mg she wants me to take, but I already feel so sick! Is it possible to have side effects like extreme fatuge (yeah, as if I did not have enough of it), dizziness, sleepiness and heartburn from such a small dose? Does it take time to get used to the new BB or I should only expect to feel worse as I increase the dose? How much time does it take to see the long-term effect of the med? Lastly, is propranolol (Inderal) good for hyper POTS (assuming no MCAS)? If I had MCAS, how is a beta-blocker supposed to make me feel "worse"? Worse in terms of POTS symptoms being worse or new symptoms from the mast cell activation creep up? Thanks!

1/ Yup, 75 degrees for me too 2/ No, no injections, but I'm a severe case and lasted only 7 secs on the TTT! 3/ Yup, terrible veins and lots of trouble. I'd still choose your test place over mine (aka Swedish over UWNC), because at UW there was no doctor in the room. Just a tech. The last time my results were "inconclusive" regarding the other autonomic testing, so I'd tick to the Swedish guys

Interesting and pretty sad statistics 42% are still bedridden and nearly half of the people who voted do not know their cause. I wish I had more poll options to add a question about the correlation between the recovery time and the actual POTS trigger. In other words - what was the root cause of your POTS if you are STILL bedridden? And how long have you been bedridden so far? (If it's been just 1 year for example, you can still fall into the second category and recover next year ) I hope it makes sense. My brain fog is terrible today.

I'm one of the horror stories. I had 2 unsuccessful inductions, 2 epidurals, narcotics 48 hour labor and developed POTS because of all the stress. If I could only turn back time, I'd choose a C-section in a heartbeat!!!

Right.. My genetic counselor said I don't, cause it usually has skin involvement? Hm. We'll see.I'll give it a try.