heathmcev

Hi everyone! I would love some advice I know I can't be alone in how I'm feeling and need to know how others cope with limitations at certain times when expectations may be higher than usual...

I'm away with my family on vacation (my parents have taken my brother & I to see where they want to retire) and I'm having a tough time. Not because they don't get what I'm dealing with - I'm extremely lucky in that they do! It's me. I decided that it's kind of like around Christmas time - how you know the holidays are going to be hard ahead of time because there's no way your body is going to let you do all of the things everyone else is able to - and you don't want to feel different or left out - but somehow no matter how well you pace yourself you still end up crashing and getting down about it (at least I do).

This is how I feel. It's like I'm in this beautiful place and feel SO LUCKY to be here!! Yet I'm holding back tears much of the time (I actually did cry on the 1st day but that wasn't emotional so much as my body being in shock from exhaustion in getting here). My brain wants to explore and ride bikes and play golf and go shopping and my body won't even let me go for a short walk (btw, the weather's cool and breezy, so heat intolerance isn't a factor luckily!). Back home that's par for the course - but for whatever reason I'm having trouble translating that to where I am this week. I wish I could just settle in, find a way to be at peace, and go at my own pace - not feeling left out when my family is running in 10 directions.

Coping skills anyone?? I want to enjoy myself and savor this rare change of scenery... I don't get away very often and want to make to most of it.

Oops. Was trying to say: so sensitive. SO great that it's helping with the depression tho - maybe that alone help make it worth the 2 weeks? I'd still check in with your dr about the surge... certainly dont want that continuing. I wonder if it's toying with something else you're on...

It wouldn't be uncommon to become senstivie to a med you once tolerated. I was on an anxiety med for 2 yrs with zero sfx but when. Tried to go back on it a year or so later I couldn't tolerate it. My dr said it happens - esp for those of us who are s

6 weeks since it takes quite a while for the SSRIs to reach full effect - and the first 2weeks or so I remember having lots of nausea, etc. I kept waiting for the sfx to pass - and the nausea did - but my mood changes and spacines didn't.

I'm sure loads of others here have been on it since it's such a common med - maybe you'll hear some more encouraging words!

Could your adrenaline surge be accounted for in any other way? Sounds just awful. Hope its less acute by now. Maybe warm milk to sleep if you don't want to try the klonopin? I'm saying this while I'm still up & on here past midnight... Need to go heed my own advice...

Dani,

So sorry you're going through this. I have to say that I didn't do well on Lexapro. It made me hyper and irrational - and I'm not usually a fly-off-the-handle type. Wasn't a good match for me. I was also incredibly spaced out and couldn't drive on it. I hope this is a passing thing in your case

That's so exciting Chrissy! It's nice to have a doctor who is truly interested in finding out how your body works and then finding a way to help you! Do you happen to know what the computer study he did to look at your spine was? Sounds like something I need to try. Have you had lots of occipital headaches & coathanger pain? The cleanse sounds like a good idea - we've all had so many tests & meds in our bodies - one of my integrative docs said my body is "full" of meds at this point. Please keep us posted - I'd love to know where all this leads you.

Best, Dizzyde

Has anyone tried the Polar chest strap that syncs to the iPhone? I just saw it at a Nike outlet today for $69.95. Maybe it'll be cheaper online. It would be great to avoid the watch part and sync it directly to my phone. I didn't see if it has continuous HR monitoring tho. Looks like there are several 3rd party apps you download to your phone that it will sync with. Anyone have experience with this version?

It seems like most of have this struggle - but with everything else we're on sleep meds are just one more unwelcome Rx. I've had unrestful sleep for about 7 yrs now (way before any dx) - so you could say it was one of the major signals my body was trying to send me that something was wrong.

I've tried a number of Rxs that didn't help. Hydroxyzine did help, but like Mason's Dad & Lenna - I've been on 6mg melatonin for the last year per my pots specialist, who said it's pretty benign (albeit clearly not for everyone here). They have me take 3mg around 7:30p and 3mg when I go to sleep. I fall asleep faster but still feel like I wake up 5x/night. Wake feeling totally unrested. Grrrr

Whoa! How much are you on? Are you well hydrated? Kinda scary. Hope they can straighten this out for you!

I haven't had caffeine for 5 years because of anxiety, but it hasn't helped my POTS symptoms at all. I get just as much tachycardia, chest pain, insomnia, etc. Now that I've been off it for so long I totally notice when I get it by mistake! My Dr said caf-free coffee is fine since its a small amount (and then I don't feel deprived!), but once or twice a barista has mixed it up with caffeinated and I have the worst jitters for hours after - feels like hypoglycemia.

Of course, since we're all so different you never know how much it may help you! Totally worth a try. I did have several weeks of caffeine withdrawal headaches - but it was nothing compared to some med withdrawals I've gone thru!! Good luck.

I've had great luck with it kicking my circadian rhythm back into shape - and no negative side effects.

That is wonderful that your son has found some relief!! I hope it sticks around unlike with the other meds. I have to say - I've been on cymbalta for a few years now and the "normal person" dose gave me bad side effects, but when we pulled back and broke the capsules up (dumping some out) the lower dose worked wonders. Unfortunately Abilify didn't work for me. I *thought* I was all chilled out on it and my anxiety was waaaay down ... then everyone around me told me I had to go off it and I didn't understand why. Apparently I was totally without affect on it -- like a robot -- no emotion! Just watch that with your son as it can cause mood changes. Best of luck to you both - sounds like all is well at the moment!

Interesting article. I'm heat intolerant, hypotensive & have a low body temp...

Hey POTSY friends,

I'm just curious about something. I've read on here in the past that some of us lose fluid from our blood vessels thus making it harder to hold onto blood volume. I have low blood volume to begin with (17% deviation from norm) with Hyperadrenergic POTS of no known cause. I just had minor surgery yesterday with fasting from midnight the night before. Because of my autonomic issues, low BP & low blood volume the anesthesiologist gave me a saline IV before the surgery (for which I was very thankful!). Anyway, the interesting thing was that as soon ad I woke up in recovery I had to pee *really* badly. Of course they wouldn't let me up for quite a while since I was so unsteady. But here's what I'd like to know... How long would a "normal" person hold onto that fluid? Clearly I was dehydrated by that time as I hadnt had anything to eat or drink in over 12 hours - which makes me think all of that having to go to the bathroom must have been from the IV. Should I have lost the liquid from my blood stream that quickly? Obviously I'm out of my depth here, but if I'm right then it would be an interesting clue for me as to how my body functions (or doesn't).

Thanks!

Heather

I'm having a procedure this Wednesday and reading this is making me worried. I mentioned to the anesthsiologist getting IV fluids but don't think they have it planned. I may have to call my neuro tomorrow and get him to fax them a request asap. I am already planning that it will take me several days to recover from what is a pretty simple outpatient surgery - but it's certainly important to plan ahead! Will be making a call in the morning!!

I get this too - your description isn't weird. It feels to me like a ball of electricity - anxious energy right in the center of my chest. I hadn't had it in a while - but everyday lately. Other than breathing I haven't figured out what to do. I don't think I'm MCAD, but I am hyperadrenergic, and associate it with my wacky sympathetic NS dancing around and acting up. Doesn't feel good - especially right now when I should be asleep! Hopefully some folks will hop on with suggestions

I'm going to chime in asking for more info about the Dr's heat intolerance suggestions. You can tell we've all got the start of summer on our minds!

Glad you are feeling good & hoping it continues!

The one time I did go to the ER I was having such severe vertigo and high BP I thought I was going to die. They saw my 155/117 and didn't question a thing, ordered tests, etc. But I think what gave me credibility & really made things move along was that one of the 1st things I did was give them the names & numbers of my POTS neuro & Endocrinologist (both 1 1/2 hrs away - so like you I had to go to a local hospital that didn't know about POTS). The ER docs called them both & got instructions. I didn't have any issues aside from having to educate them - as we always do!

I hope you don't have to go - but if you do, have your specialists' info handy - can't hurt...

Mestinon has helped raise my BP to be fairly normal (but I also take florinef which deserves some of the credit). I only take 60mg 1x/day. I couldn't tolerate the 180mg timespan - had horrible GI issues. Since you posted about having nausea you might consider a slow start to let your tummy adjust. Mine never did get used to the higher dose, so I get what benefit I can from a lower amount. But do search for older posts as many have commented on successes & frustrations. Good luck - I hope it helps you!!!

Yeah - that's insane. I'd call your insurance as well as the dr's office to contest it. especially if you're not going back to him - there's no need to do him any favors!

Count me in! I'm totally obsessive about finding out what's causing my POTS. And when I talk to most Drs about it now, I don't even refer to it as POTS anymore because that doesn't begin to cover all of what's going on in my body - I refer to it as a broader "autonomic dysfunction" - which takes it out of what many Drs seem to see as a purely cardiology-related dx. I am definitely not EDS, and doubtful MCAD. So what is it? My Drs were at least proactive enough to do the insulin tolerance test which revealed hypopituitary (central adrenal insufficiency & adult growth hormone deficiency) but they also say this is not a cause - that whatever mechanism in me is causing POTS is likely also making that happen. Ugh! Frustrating.

I do believe that all of us together will figure this out... no one will ever care about this as much as we who have to deal with it 24/7. I've had a slow 10 year decline & was dx'd finally 2 yrs ago, and only seem to be getting worse despite doing everything the Drs tell me to do.

Seems like the best thing we can do is keep each other's spirits high as we plow through (and I mean that literally - feels like I'm pushing a heavy one with the fatigue! Lol).

Thanks! it's not too long or complicated but v. informative. I've sent it to my family

I've got the low body temp - but I feel like my body just goes with whatever extremes the weather is doing. So i'll almost always have a temp in the 97s but I'm freezing all winter and have horrible heat intolerance all summer.

Do the rest of you swing back & forth like this or are you cold all year round?

Do you have a good osteopath near you? While they can't cure infections, a Dr who's good at osteopathic manipulation can really open up my head & relieve a lot of pressure... and it's hands-on only -- drug free

I hope you do get some answers! Please keep posting - I have the same difficulties and haven't had luck with ENTs I've seen. There is definitely a connection between vestibular & ANS - why else would so many of us have visual & vertigo issues! I'm looking fwd to hearing about you experience...