Altruism

I've been bedridden on most days and housebound ever since I gave birth 2.5 months ago. I was curious how many of you have ever been in such a bad shape, how much time did it take to recover and what is the root cause of your POTS? I really need some hope and/or to chance my expectations (depending on your answers). I have to get better and take care of my newborn. Has any of you been bedridden before but not anymore? Has any of you been housebound before but not anymore? Has any of you recovered? Are you having relapses? How often? Thank you!

I'm so happy for you, Issie!!!! I'm too dizzy to read the entire thread now (sorry, but does this mean you do have protozoa and you found your root cause (aside from EDS and MCAS)?

It's called pica and it means your iron levels are probably low.

Recently I was being told in the cardiology that there is a 27 hour BP "holter" thing you can wear at home. I don't know any more details, but I'm willing to wear one too.

Forgot to mention I took 0.25 mg Klonopin while waiting for my TTT because I was already feeling a terrible adrenaline surge. At least they got to see how bad my POTS is even while being on a benzo! Naomi, there was no doctor in the room, just a tech and my husband. The tech said she's not allowed to discuss the results with me, but my husband told me all the numbers as he was sitting right in front of the monitor. Also, looking at their faces, I knew I did something pretty "impressive". lol I'll follow up with my neuro next week and I can't wait to get some meds and finally some relief! I can't live like this anymore! We don't know anything about my BP as my HR goes so high in so little time that blood pressure cuffs give error (even the professional ones). I truly hope today they managed to get an idea of my BP... misstraci, I'm waiting for my NE and catecholamine results. I also did a stand up brain and spine MRI. I had VEDS genetic test too. I'm determined to start the CORRECT treatment by February. I can't survive these horrible SVTs or whatever they are. I don't know if it's severe panic, POTS, NE rush or a sick heart, all I know is I had none of these episodes before POTS started.

My doctor thinks I have hyperPOTS and suggests trying Propranolol. I'm surprised it's not mentioned anywhere on this thread. Isn't it a good one for hyper Potsies?

How about half blue/half red? I know it's black humor (sorry), but we do tend to pool blood in our extremities and lack blood supply to our brains. I think I've seen blue painted fingernails (thumbs?) for the invisible illness awareness week.

Thanks for all your support, guys!!! I had the TTT an hour ago and I officially broke the record. I was up for ... 7 seconds!! My heart rate went from 90 to 185 in 6 seconds and I felt extremely tachy, dizzy and scared. They had me down immediately and seemed quite scared/confused/impressed. I'm worried that my anxiety contributed to the results. I truly hope my neuro won't decide it' "just anxiety" as 2 min after they tilted me back down my hr was back to 95. My bp stayed pretty much the same - 140/90. I wish I stood up longer so we could know mre about my bp fluctuations, but that's the best I could do. This should indicate hyperPOTS, right?

I'm having a TTT tomorrow and I'm terrified of it!!! Please, give me some hope and courage otherwise I'll cancel it for a second time in the last 30 days First time I was so unwell (hr goes up to 160 withing 5 seconds of standing) that I did not even need the test. Bu my new neurologist wants to see what's going on with my HR and BP. I'm scared I'm going to faint. Do all people faint? Can I tell the nurse to stop the test if I feel too unwell before I actually pass out? Will it be inconclusive? Is 2-3-5 min on the TTT enough to diagnose POTS if your HR does go up over 120? I can't stay up for longer, I'm bedridden, housebound and I don't want to pass out, I'm scared this will make my anxiety even worse... ((( Thanks!

I love this thread - so positive!!! I needed to read this! badhbt, I had no idea this is your second flare. Sorry to hear this, but good to know you managed to recover once. That means you can do it again!! I'm curious about hyperPOTS recovery status too.

Thanks. I wonder if I have anxiety or something else going on. I feel warm sensation, flushing, extreme panic, fear, nervousness, doom, an then the chest palpitations come. Sometimes they even make my heart go into SVT. This is the scariest feeling in the world! Is that an adrenaline rush or anxiety? I get it while resting in bed, right bore sleeping or upon waking up. It's not postural. My doctor thinks if it's not an upright symptom it's not POTS. What is it then?!

Hang in there! And congratulations! I've seen many success stories with POTS pregnancies here, so I hope you will be one of them! I'd consult with a doctor before stopping all meds cold turkey. Risk/benefit has to be evaluated.

Alex, thanks for your support and all the detailed explanations! I'm a little less nervous about it now, plus, I keep myself busy today with a stand up cervical spine MRI :S what a fun week! SeattleRain, at UW Neurology clinic you can have QSART, controlled breathing, Valsalva and TTT. I had all but the TTT in December. QSART rules out or confirms authonomic neuropathy. Controlled breathing is ok, Valsalva was quite difficult for me as I have an exaggerted BP response in phase 4 - BP was 190/120. Let me know if you need more details about the locaton of the lab, the procedures, etc! badhbt, dr Thyerlei is sending me back for a TTT to the UW neurology clinic. She wants to rule out pregnancy deconditioning, anxiety and wants to know what the heck is going on with my BP, as It cannot be detected when standing, even with professional blood pressure cuffs.

dsmom, sorry to hear this. What do you mean by " I'm wore in some ways"? What should I expect? Are you functional, can you take care of your kid/s/? I hope you feel better soon! Katherine, thanks so much for the info!! This is encouraging! MissTraci, I think it's too early for you. In 5 years you might be one of those ones who disappeared from the forum, blink. You never know. I hope I am one of them too!!!

My question too! I've only tried Metoprolol so far and it did NOTHING. Propranolol is next.

What are the odds! SeattleRain, I'm having a TTT on Wednesday and I live in Seattle too. Might see you at the EEG lab lol I had the other autonomic tests done in December, but they were "inconclusive", because I was unable to do the TTT due to the severity of my symptoms. Now I was told by my neuro that I HAVE to do the TTT and I dread it. Am I going to necessarily faint? Do they keep you up until you pass out, can I say ""Stop it now"? What does it feel like to go from supine to standing position while being all strapped up? I'm terrified, but it's the only way to get a final diagnosis. Good luck, SeattleRain!

I love my Klonopin! My doctor thinks I have hyper POTS (still waiting for some test results), but in the meantime Klonopin is a life-saver when it comes to adrenaline rushes and anxiety! It works almost immediately for me (weird, I know) and stays in my system for hours. Angela, do you get sleepy or outspaced at 2mg? I'm only taking 0.5 these days but I may need to up it to 0.75 or 1mg as my anxiety/adrenaline rushes can be severe. What does an adrenaline rush feel for you and do you get it only when standing? Also, a stupid question... There is no anxiety a pill cannot take care of, right? I need some reinsurance that I can be helped, no matter what. Thanks!

Thanks for letting me know, Corina! Actually, this is great news! I assume most of these mommies are better/recovered and are living their lives

I know this is a pretty old thread, but I wanted to see how everyone has been doing during all these postpartum years. Have you guys gotten any better? Did you decide against having more children? If not, how was your next pregnancy? I developed POTS during/after the birth of my firstborn. I'm bedridden now and I really want to know if I can get better and/or recover and have another child in the future. Thanks!

Just a hug from me. A big one!

I knew it! Thanks for confirming what I thought, guys. It's really discouraging to read something like this and the worst part is that many pages copy-paste info from Wikipedia, so we end up having a chain of wrong statements creeping up online and scaring us - the patients. SeattleRain, I know everyone can make a change. I am considering doing it myself. Or I'll mark the article as lacking objectivity.

According to Wikipedia: and I really need to know where the research comes from? Is it true that pregnancy and postpartum POTS has poor prognosis? Why is that? Isn't childbirth considered a trauma? And I think trauma-onset aka sudden onset POTS has a good recovery prognosis (can't find the link now)? Are there women with pregnancy and postpartum -induced POTS who saw improvement, completely or partially recovered? Could you please chime in? I need more examples and hope! Are there women on Dinet who developed POTS and have EDS too? If yes, have they seen any improvement? If I find enough examples I'll go ahead and try to change the wiki page. Let's prove them wrong, we all need hope and accurate information! If someone has seen a case study, research or article that proves Wikipedia is right, please do share it with us. Thanks!

+1, Heather (hug) However, I never have good days. I have bad days and terrible days. Terrible days are bad days + more symptoms that change on an hourly basis. I don't know how you guys push through and what you mean by that, but I admire you for doing it. I'm housebound and I really want to go out for a short walk. But I'm tired, dizzy, lightheaded and tachy. How do I push through? I walk and walk and get dizzier and dizzier.. Then what? Push through the presyncope feeling and pass out? Or sit and wait to feel better and keep walking? I am trying to understand what pushing through means. This might give us all more good days. I love the " have a good day" with ever since I got sick. It has a totally new level of meaningfulness now.

Am I the only one?

Hi, I just got back my results from my 24 hr sodium test and my doctor literally said "reduce salt intake and do not even consider salt loading anymore"! She said that ideally in POTS patients the sodium in urine should be about 170-180 and mine came back at 320! I was salt-loading for 2-3 days, but I normally eat very healthy high protein low-carb diet and I have never consumed lots of salt in my life. Do you have any suggestions what could be causing this? Aldosterone issues? Adrenal fatigue? Salt-wasting? My plasma sodium levels are high normal (142). Another weird thing was that the 3L urine container that was given to me for 24 hr urine collection was full after 12 hours. I have crazy high urine output as well (over 3.5-4 L). I drink about the same amount of water, but it looks like I'm losing it all? Have you ever had high instead of the typical for POT patients low sodium in urine? Thanks!