Relax86

My head feels like it's going to pop. Like descending too fast in an airplane. Not painful but doesn't seem normal to me. Good luck to you. Lots of good info here.

My feelings exactly. For as terrible as this year has been if I'm a goner then it would be over by now. It's a crappy way to push on but for me pushing thru the fear and anxiety is one of the best ways to get in front of POTs...it only makes me worse.

Recently tried to add it as part of my diet....just like the taste of olive oil better. Right now it's better if I eat things that my taste buds don't oppose. It's on my radar though of things to try

Also, after about 6 weeks on this drug and having a good run my BP spontaneously decided to stabilize...now that weekend was a little crazy. Which entailed me taking my Friday 2pm dose and having a BP spike for about 2 days (140/90 which is a spike from 85/45). My BP usually runs around 120/75 these days....in the early morning it's 105/58ish...not terribly low and increases with some water and by the time I brush my teeth. So I no longer need to use midodrine. Funny thing is that it was easier when my BP was consistently low as the Midodrine was a consistent fix. But as with POTs it keeps moving thru your system and constantly keeps us moving with new or changing symptoms.

When low BP was my main issue this drug made a huge difference. The improvements completely out weighed the side effects for me.

I recently found a great endo who first and foremost believes my story and symptoms....and has just begun to run a gamut of tests. I'm starting with some bloodwork that hadn't previously been done...autoimmune stuff and I haven't ever been ruled out for Lymes. Also having a pituitary MRI because I am producing breast milk (sorry for that little tid bit but it's just one of the weird things my body started doing this summer). Some may know from my previous posts that I've been a decent responder to hydrocortisone. I'm down to 2.5mg/day....slowly weaning. I have had a little surge of symptoms following my menstrual cycle (not uncommon) but I love the steroid for helping reduce them and I'm just not willing to bandaid this with the wrong drug anymore. However, once off the HC I can start to get retested for adrenal stuff....she believes my symptoms are actually pituitary not communicating with adrenals....hopefully my adrenals still like me once off the HC and I can find the right meds for me. Today symptoms are right ear pain, right facial pain, feel funky with noise, smells and light, lightheadedness, low am BP, nighttime tachy (feels like adrenaline surges once I lay down). Right hand veins popped out and difficulty breathing. MRI is Tues, bloodwork should be late next week once totally off HC. Will post if new endo offers anything new.

We watch each other struggle. I know how you feel about wanting a normal life. I was able to cardio 4 days this week and then I just couldn't. Sometimes a little symptoms puts me into a panic as if I'm waiting for the ball to drop and be back to crawling. It's such a mental game. But you're pretty tough, I've read a lot of your posts...followed/stalked your advice and research. I know you're going to have better days ahead. Hang in.

I voted but both my pregnancies were before POTs diagnosis or out of control flares. I believe I've had POTs for quite a while but pregnancy didn't make me worse or better. After delivery excessive fatigue but who isn't tired with a new baby. Now that I see how blood loss and hypovolemia affect me it makes more sense. Good luck.

In just mentioning protecting core body temp ~ I am considering myself 80-85% better these days. Have started some weight training for the last few months and almost back to my old baseline. Started cardio this week and can do about 15 min on Treadmill and I'm happy with that. But last night I was freezing cold after having a little ice cream and being in the house my husband keeps at 67degrees. I turned on my heated blanket to warm up and accidentally fell asleep. I woke up very hot, tachy at 130, unable to sweat or cool off. I was up for about 2 hours trying to hydrate (slowly), breath and use cold water to cool me. Eventually it went away and I woke up no worse for the wear today. But maintaining body temp is so important in a body that struggles for it's own homeostasis.

Monitoring just makes sense as it insures the best dosage and helps us chart responses (both good and bad). My pressure didn't go up too much initially but my symptoms of fatigue reduced dramatically. Good luck.

I agree with both replies - and had very little side effects when I used it. After about 6 weeks my BP actually returned to normal and now I don't need it. I'm not totally POTs free but I believe coming out of this flare. Good luck

So happy for you....it's nice to read the recovery posts...it's not boasting at all. We're all looking for success and for me it's just as good when it's someone else's. Accomplishments like that are huge. And what better way to celebrate than with the people who really understand what that means. I so psyched. Cheers

Really good question - b/c I have things in childhood that I believe were subtle clues. But swings were fine for me, never car sick. Wasn't a fan of heights, amusement park rides. Definitely could not run as far as the other kids, never had enough breath, always had red face for hours after gym and much heavier breathing than everyone else. Poor recovery from any running. I seemed to never be able to get into the conditioning other kids could. As an adult I finally just switched to weight training and seemed to be better for me. Gave up on Treadmill and limited to 15 minutes (this is all prior to my most recent bad flare). I am a low BP POTs person. Semi-confimed hypovolemia. I suspect could be autonomic in nature. By the way - I recently moved my treadmill upstairs....it's staring at me.... baby steps people....;-)

I don't know what type of POTs I have mostly because there are no Dr's who specialize in my area of getting any more of an exact diagnosis. I have crappy POTs - that's all I know. I couldn't work from Jan to March....but once I returned part time for the first month then full time I my symptoms did improve. I returned very symptomatic and seemed to re-train my ANS to tolerate standing, position changes, talking and walking and then (much later) light lifting. I'm in out-patient orthopedics ....physical therapist....so I have the ability to sit and stand. I made it work, directing pts from sitting when I could and stood when I could. My boss was supportive in making sure I sat if I looked like I was going to faint. And I would also like to thank my husband for dressing me in the morning as I couldn't have gotten to work without any clothes on. Mornings were always the worst for me. I am much better from having made a push to return to the type of job I have. I'm sure it wouldn't work for everyone. Good luck all

I think it's so ok to allow ourselves to be pissed. This robs us of our time, careers, money, friendships just to name a few, and replaces those with loss, Dr appts, debt, disappointment and one of my biggest obstacles - fear. I definitely allow myself to have frustrations....I read the forums and really feel so sad for all the other people like you Puppylove who are struggling far worse than I am right now. I just hold onto belief so hard. And you're young so the odds are with you. I and I guess if nothing else at least the smell of the salt air or the look of a beach town might make you smile. When I feel crappy I like to be home. But the strength that us POT's people possess is to try and find some positive. Hopefully you'll see a great sunset/sunrise or maybe a super hot guy - hehe.

I feel like I make myself appear as a total nutcase when I discuss my symptoms. I rarely talk about it. The list of ever changing symptoms still just blows my mind. I think the general public is conditioned to see anxiety....and I'm not well enough to fight that battle yet. Good luck to all who can. I admire you.

I liked the boost I felt on Midodrine. The side effects were more tolerable than how I felt with low BP. Unfortunately or fortunately my BP's are up these days to around 105/58 so I stopped taking it. Life was almost better when the BP was low and I could count on the meds to normalize it. Now my BP's are a little higher and not low enough to not experience a spike with the medicine. I originally was happy with 2.5mg 2x/day but started to notice that it wasn't enough after about 4 weeks..... I was just about to up my dosage when I had a weekend with a spike. So I can see how your body accommodates very quickly with this drug. I also salted and hydrated with it. It helped the drug to give me the effect I needed for longer in the day. Good luck

I actually felt a little worse before I felt better. Was starting to question if I was ready for exercise but noticed that I had a few better days inbetween the bad. I stuck with my exercise routine but I am heavier on the weight training and less focused on the cardio - just cause my resting HR is 90 and it jumps so quickly.....mentally I just can't push myself yet. It took me only a month to notice a difference. I'm not cured - not even close - it's a daily battle with POTs and I think I was really hoping it would go away. My mental game is my biggest barrier right now just trying to live with the plateau and get around the fear that I might get sick again.

Could be why HC pulled me out of my flare. I'm still not right but functional. Could not have done it without the HC. I went off too soon and had a set back. This time I'm taking my time getting off of it.

The veins are my latest symptom that I can't figure out. Worse on my Right side than left and most prominent in my hands not feet. I just asked on another thread what someone's hands symptoms are. Mine seem to pop at the end of the day or when I sit in my car to drive home. Burns a little too. This symptoms started as my BP started to normalize....I will never get used to the uniqueness and patience required for POTs.

Can you tell me or explain to me what your hand symptoms are?? Thanks ~ T

I tried it for just a few days in the very beginning stage of my flare. My head was spinning with fear and symptoms at the time. I ended up getting good relief from HC but after all the info I gained from this forum I believe the florinef would have worked had I given it a better try. Once I started to recover with HC I was afraid to try anything different. I also started midodrine which worked fantastic when my BP's were low but one day - out of POTs nowhere - my BP regulated itself to close to normal so I stopped taking it. My plan is to hopefully avoid a relapse but if it happens I would give florinef a real try and stay off the HC.

Gross generally there is an equation for rehab after long periods of bed rest. For every full day in bed it can take a week to rebuild. We are also fighting our bodies not wanting to regulate HR, BP, body temp, vision, digestion, etc ....so it's a challenge. But it can be done. I work in outpatient orthopedics and worked in a long term care facility as well and I have seen people recover from deconditioning (not specific to POTS although we are starting to see POTS folks in our Physical Therapy clinics) so it can be done. I was scared going it alone and had only been completely bedridden for 4 days, then stayed in bed for about a week more until I realized I probably should move. It was the challenging of my autonomic nervous system that seemed to help it rediscover how it was supposed to work. I did get much better - it's been almost 9 months since the start of this last flare. Having had a cardiologist clear me of any heart condition and a neuro clear me on that end I realized that I would probably be safe to try and move. It's scary and frustrating but it can be done. I think at best we are all just looking for some level of improvement realistically. I want every day to have my old life back but it doesn't seem like that's my option. I am glad I pushed myself. For me moving was the key. Good luck

I fear relapse every day now that I'm about 85-90% better. I don't know why POTs happened and I don't exactly know why it went away. I try to not let this loom over my recovery but it's hard.

Correcting anemia was a huge part of my recovery. I also had low ferritin. It took extra iron for me to correct. I also had to take it on an empty stomach in the am and another at the end of the day. I chose an iron with C. I also had to limit my blood testing at a time when I really wanted to explore what might be going on in my body. But blood volume was an issue so blood draws were killing me along with crazy menstrual cycles. Good luck.