Weird Stuff

[delphicdragon]

Hey Everyone-

I've been getting better for a while (knock on wood), with the occasional setbacks. But currently I'm feeling a bit down and out of it. (99% sure it's my hormones.. grr...)

I noticed I'm wicked clumsy. I tripped over myself and fell down the stairs two days ago, dislocating my shoulder. YEAH, Ehlers-Danlos! So I'm in a sling, waiting for a week to see if the pain goes away or if I tore the rotator cuff too. Therefore, because of the pain, I'm not sleeping too well, which just makes the clumsiness worse. Anyone else wicked clumsy, especially around "that time"?

I also had another strange symptom where I woke up and rolled over (didn't even get up to turn off the alarm yet) and my heart was POUNDING! Everything felt like it was shaking and I had to lay in bed for a half-hour before I could feel confident in myself to move without triggering something. Thank God my alarm turns itself off in 1 min. Anyone get that weird feeling too upon just rolling over?

Also, I tried to play my French Horn tonight, specifically to annoy my mother (LOL) and found that THAT triggered a POTS episode! So now I'm sitting in bed watching TV. Any instrumentalists out there that now find they can't play? (I haven't tried to play for almost 6 months, since I had my last episode, but I didn't think that the instrument would be a trigger)

Thanks everyone. Hope the heat isn't getting to everyone and you're all cool and comfy in your A/C.

Sara

[pat57]

pain can trigger problems

[Guest tearose]

Hormone changes most definitely will cause more weird symptoms!

Give it a few more days and see what shakes out.

Mornings are always weird for me, my bp and heart rate are so low that just stirring in bed can send my heart rate up rather quickly. I keep water on my nightstand so I can start hydrating as I get ready to get out of bed.

The heat is surely not helping you either. Can you put the horn down and chill for a day?

take care,

tearose

[lorrie]

I hope things smooth out for you soon. I do have problems first thing in the morning with my hr. I wake up with a pounding heart almost every day.

Pain also sets off the POTS. I had a kidney stone stuck in a tube and was having severe pain in my stomach and back with it. I was sitting in the urologists office waiting to get my x-ray results and passed out with a full blown POTS episode. Thankfully my sister was with me to explain to the rush of office staff and nurses who came running.

Maybe you should wait awhile longer to play your horn. Best wishes.

[jump]

Sorry to hear about your shoulder!!

I am very clumsy and off-balance, especially in the mornings, because of POTS. I kind of teeter, especially if I move from standing still to walking. And I think it's fairly common to be more clumsy around "that time," so I would imagine the combination of POTS and hormones could make a person VERY clumsy.

I also occasionally have the pounding hr when I first wake up. It can be kind of scary, because it completely immobilizes you. But my cardiologist assures me this is fine. In fact, he even likes to tell me it's normal. Ha! But I believe him that it's not dangerous, because otherwise I'd probably be dead by now.

I used to play the French Horn too!! Such a lovely instrument. I stopped playing a few years ago when I finished college because I missed having a band to play with, but I really am not sure I could play it now with POTS. The breathing, I think, would just be too hard for me. But maybe it's something you could work up to, if you really love it? Or, if you're musically inclined, consider learning an instrument that doesn't use the breath, like guitar!

Hope you feel better soon,

jump

[HoudiniCat]

I used to get tachy upon rolling over in bed all the time but fortunately that symptom has subsided for me. Even if I rolled over in my sleep, my heart would start pounding, all the other symptoms would start and I?d have to lay there for mins/hours before it subsided. My POTS doc told me not to be overly concerned about this ? said it was cause I was changing position (as in the ?postural? part of POTS). Somewhat reassuring but its still very scary and horrible when it happens.

I also get clumsy at times ? tripping, walking into doors, dropping things, etc. Hope you?re feeling better soon ? watch those stairs!

[ajw4790]

Hi!

Geez! Sounds like you have been having some fun!

Yeah, I can be pretty clumsy. But, it is normally the kind where I temporarily hurt myself like slam my arm in a doorway etc. and not a longterm pain/injury.

The tachy in bed thing, I know many mention it, but I haven't noticed it for myself.

As far as instruments I always hated them and couldn't keep up or be able to blow into an instrument as simple as a recorder, and I would get kinda dizzy. This is back in elementary school, interesting... I hadn't thought about this before as a possible early symptom.

Also, do you have neuropathy that can be causing some sensory and proprioception issues, that make you more clumsy? Or is it more of a your symptomatic and dizzy etc. so are less coordinated due to lack of cerebral blood flow?

Good luck and be careful!!!

[momofsara]

First let me say, I'm so sorry about your fall. Second, my daughter, Sara, is very clumsy, and falls frequently--we've even joked with her about getting her a football helmet( she knew we were kidding her) She also has the heart pounding thing going on. She staggers like shes drunk sometimes. They say its from the dysautonomia(POTS) she has dizziness all the time. So I guess its all part of the demon--- Take care of yourself and I'm hoping you didnt tear your rotator cuff( I had to have surgery for that).....Susan

[MelissaCrystal]

These don't sound "weird" to me---they sound typical! I've been clumsy my whole life, and have the scars and dislocated hips to prove it. In fact I fell down 2 sets of stairs (in two different buildings) just 3 days ago. As for the heart pounding, that happens a lot to me in bed. It's very disconcerting, but it happens so often now that I don't freak out about it as much anymore. I used to get scared that I was having a heart attack---which I hope isn't possible at the age of 21. Knock on wood.

Good luck with your recovery---I can't imagine how painful that must've been. I've had trouble with both my hips, and that was the most horrible pain I've ever experienced. Be careful with yourself!