Was Feeling Better

[delphicdragon]

So I've been feeling a lot more human over the past year with the addition of Folic Acid, B12 and D. However lately I'm experiencing a lot more pain in my muscles (got a fibromyalgia diagnosis out of it) and more palpitations. All of this started after my last period (2 weeks ago). Went to the cardiologist for my 3 month followup and my heart rate is 130 laying down. Needless to say, he wasn't too pleased, so now I have a holter monitor and an echo. Grumble.

Need some support here. I thought I was mostly over the POTS crises, but they seem to keep coming - especially after stress. I need to hold out for 5 more weeks before I can give in to this disease again - if I can't hold out, I lose my job. Wish me luck!

Sara

[lieze]

Hang in there Sara!

I'm glad to hear you were feeling pretty good maybe things will quiet down again very soon for you.

Have you tried taking anything for anxiety for the stress?

I notice I don't seem to have a very high threshold for it at all.

I would probably try an antianxiety if you need to make it through 5 more weeks.

It might help your heart rate come down a bit. Just try a tiny dose if you can.

Xanax is amazing when I take it I don't even feel as if I have POTS-get an appetite and everything. I just choose not to take it on a regular basis, but if I needed to get through some days at work I'd probably opt to take it during the times I was at work to help get me through.

Good luck keep us posted.

lieze

[Tammy]

130 bmp laying down should be addressed. If the holter monitor doesn't show anything, ask your doctor for a beta blocker (in a very very very tiny dose... and start off with 1/4 of the amount and SLOWLY work your way up to a therapuetic dose). Also, Xanax may help you but you need to discuss this with your cardiologist also, and stress the fact that you need to get through the next 5 weeks... again, if he/she agrees to try Xanax (if you aren't already on this), take a tiny amount (I take 1/4 of the smallest dose and it helps keep my heart rate and adrenaline surges down, not perfect, but enough to get through a few hours that I need to when necessary). You will know if the amounts of either is too much as you will feel even more lathargic/weak/lightheaded/short of breath, etc. If so, lower the dose even more and keep your doctor informed of this. Hope you can find something to help you get through the next few weeks

[MomtoGiuliana]

Have you had your potassium levels checked? I have often low potassium, with flare ups, and often muscle pain goes along with that, for me. Possibly for me the pain is a combo of low K and not enough oxygen to my muscles? But recently I was having this muscle pain and bad tachycardia until I got a potassium supplement and IV saline. Within 1/2 hr I was greatly relieved of these symptoms.

[Angelika_23]

I heartily second MomtoGuiliana's comment. Potassium can be a stinker at times.

Also, I was taken off asthma meds and Sudafed because they can also cause a high heart rate. Could they be contributing now?

If it isn't that, then maybe the beta blocker might be a good idea. I am on a small dose of Toprol XL and it does help.

Good Luck,

Angela

[summer]

What is it about stress, anyway?

Sara, sorry to hear you are feeling that "downward pull" again. It is so discouraging to be feeling better and then to feel like that is starting to slip away on you. I know that stressful times really bring on my symptoms and can certainly cause a crash. I'm sure I can't give you any advice that you don't already know all too well... try to get lots of rest, and hydration, pace your activities, bla,bla,bla.....

If it helps any, there have been times I thought I was headed for a full blown crash and it ended up being a dip. I hope that's all this turns out to be for you. I do wish you lots of luck over the next weeks. It's very stressful just worrying about keeping your job. Hang in there... we're rooting for you

Summer

[tinkerbella]

Hi sara,

I was wondering how often are you having neb treatments? As mine make me tachy? I have to only use when really bad and then take the dose and throw half away. Also we have talked about this before here but are you possibly taking in caffeine or stimulants in foods, drinks, or med that you are not aware of? Just google and it will bring up a huge list of things that you might not be aware of.

Have you looked into Mast cell disorder? Been checked for a pheo?

I hope you get this all under control as It happens to me with exertion and it does not feel good at all.

Keep us posted.

I wish you the best of care to figure out what is going on.

xxx's

bellamia

[Noreen]

So I've been feeling a lot more human over the past year with the addition of Folic Acid, B12 and D. However lately I'm experiencing a lot more pain in my muscles (got a fibromyalgia diagnosis out of it) and more palpitations. All of this started after my last period (2 weeks ago). Went to the cardiologist for my 3 month followup and my heart rate is 130 laying down. Needless to say, he wasn't too pleased, so now I have a holter monitor and an echo. Grumble.

Need some support here. I thought I was mostly over the POTS crises, but they seem to keep coming - especially after stress. I need to hold out for 5 more weeks before I can give in to this disease again - if I can't hold out, I lose my job. Wish me luck!

Sara

Sara-

Wishing you luck that the right med combo helps you pronto!

[delphicdragon]

Thanks everybody! Still feeling crappy but getting tested so hopefully I will feel better soon :-)

Been off the Asthma meds and Sudafed for a while now. Only take them when my asthma acts up (aka someone around me smokes) or if I get sick. The sudafed is only if I need a LARGE energy boost as I've built up a tolerance for it.

I do have low potassium (3.5). Getting it tested again today to see if it is low enough for IV supplementation. Eating potassium rich foods does NOTHING. Heart rate was 114 today, which is better but still not perfect. I also got 10 hours of sleep which helped with the muscle pain.

For all the other questions, I have been tested for pheo and am completely caffeine free as caffeine tends to put me to sleep.

I think I might ask the doc for some Xanax, though that isn't ideal. Got a script for a beta blocker too. I think most of this is b/c of low potassium and too much exertion. I drank a ton of water this week, went from peeing 3-5 times a day to peeing every hour. (Was told liver enzymes were elevated due to dehydration, so I tried to fix it ) I'm thinking that probably flushed out my potassium and sodium. Still thinking POTS is kidney related as much as it is cardiac and nervous system related.

Sara