Tammy

Hi, just was again trying Atenolol that didn't work for me a few years ago, but my EP seems to think it will help my adrenaline rush symptoms, so trying it again. Just was curious to see how many have found this specific drug to work for them or not work for them and why? Thanks.

Tammy

Hi Dayna,

OMG, I can't believe you are dealing with Shingles on top of everything else... I'll keep you in my prayers!

God bless,

Tammy

Hi Dayna,

My regular physician doesn't have a clue about IST/POTS so I was referred to an Electrophysiologist and for all my yucky symptoms related to it, my EP works with me. My regular physician's attitude on it is to just "add more salt to my diet and drink extra liquids and then I should feel just fine" was his words! Find a physician that is willing to refer you to an EP as most specialist require a referral and so do many insurance plans.

Hope you can find a caring and knowledgeable doctor.

Tammy

Hi Holly,

I have tried Pindolol for the tachy and the problem for me was severe insomnia from it, so I had to quit taking it because of that. It's a typical beta blocker which I haven't had luck with yet, so depending on how well you react to Beta blockers may depend how well you'll do with Pindolol. Hopefully it will work for you, otherwise, if you can tolerate trying other ones, there's a ton of different meds to help the tachy that hopefully you can find one that will work. I haven't found one that worked for me yet, but still trying different ones periodically.

- Tammy

What do we do all day... well what I always say to people who don't understand being bed ridden, is to ask them to think of a time when they had a really bad stomach flu and to think of how they felt on those days, and then I ask them that while they felt that way, what did they do? Usually the answer they give me is they felt too sick to do anything--- and I say "exactly"! So if they'd picture themselve feeling like they have a stomach flu every day, what would they do all day!!!!! I don't "exactly" feel like I have to stomach flu, but feeling severely sick with multiple symptoms has the same affect, and all a person can do is just rest. We use up all our energy just being awake for goodness sake

- Tammy

Yes, definitely have rough nights at times, but not sure why some are worse then others. I don't know if another events monitor will catch anything that it already hasn't. When I go through nights like that, I usually end up sleeping in a slighly upright position, like in a recliner, and that seems to help some of those symptoms. Also breathing exercises may help you some - try breathing in really slowly and hold it for 5 - 10 seconds and than slowly let it out. Just do that a few times in a row and see if that helps at all. That's about all I can think of ideas of what might help a little.

Hope your having better nights soon -

Tammy

I tried Buspar a few years back but it didn't help my symptoms at all, just made me very tired, so was like a sleeping pill affect for me more than anything. Hopefully it will help you with the anxiety you are experiencing.

- Tammy

I can completely relate. I usually end up calling a friend or my husband when I'm alone having a severe episode or just pray really hard asking Jesus to help me. I always physically feel like I'm going to die during them, so I get so scared. I think it's a normal thing to have those feelings. I guess I don't have much advice other than to say your not alone and definitely not a baby.

Do whatever makes you feel secure and comforted

Tammy

Rebecca,

(Hey great name, we named our daughter Rebecca So sorry you are having such a difficult time with all the nasty symptoms. Please don't give up and try to be understanding toward your husband also as it is so hard for them to understand... mine recently told me he doesn't feel I'm trying hard enough to feel better???? and I just try and think about how impossible it is for them to understand as they have never felt as sick and almost near death as we have - but there's days where I lose faith in myself to - I turn to God and he carries me through those days, but it isn't easy for sure! So don't loose faith in yourself or your God.

I will keep you in my prayers and hope help will come your way

- Tammy

Not that this has much to do with the topic, but this is the first reference to hyperpigmentation spots I've ever heard of since my daughter's birth. My adopted daughter has this listed on her birth papers from the hospital and she has large blotches all over her back and buttocks... they almost look blueish colored sometimes, but usually brown depending on the light... When we changed her for the first time at the hospital, the nurses had us sign papers that we knew what they were and that they were there at birth and didn't happen during delivery or doctor/nurse care, before we could take her home - really kind of freaked us out! Don't know if this is true for all hyperpigmentation spots, but her pediatriction said they should mostly fade by them time she's five (so far they are still very apparent and I have to always explain to anyone new who watches her what they are so that they know they are not bruises!)

I can understand how unsightly they must be... guess we are lucky her's are in a hidden area

Hope you can find out information to help make more sense of why hyperpigmentation spots happen.

- Tammy

I read your post and what came to mind is that you should go with your instincts because usually a mother's instincts are right. No one knows a child like their mother does... I'm learning this with my daughter and looking back, my mom always would tell me to never overdue because I wasn't that energetic and had some undiagnosed illness as a kid but recovered from that, so it never phased me, but a mother knows best (I didn't listen and now here I am:(

I know my mom "didn't feel good" quite often but she never complained about her symptoms so not sure if that's what she had or not, but I think sometime there's possibilities of being more prone to it than other's without family history.

- Tammy

Mine started suddenly after a long day biking, playing volley ball, having a few drinks, and ending the night biking back home feeling extremely tired, but had to keep biking to get home and started to feel pain in my arm and jaw, lightheaded, short of breath, nausea, but kept on biking because had to get back home. Once home thought I was dying... pain in my arm and jaw, nausea, short of breath, sweating, etc. for about three hours, than finally feel asleep only to wake up about an hour later with my heart racing out of my chest - went to hospital and they said all my tests seemed normal? and that was the beginning of the end of the healthy life I knew.....never been the same since and seem to get worse with each physical or mental stress events.

Thanks for all your encouraging words. You all mean so much to me and I'm so happy to be part of this forum friendship and support. It's a such a God-send

- Tammy

Anyone else feel like their whole life is seen from the eyes of your bed or reclining chair? I've had this stuff for six years now, but since September, it flared severely and have been barely making it through each day. Almost all of my day I lay in our recliner watching my toddler and save up enough strength to get up periodically as she needs me. She's into climbing now, so today I had to keep getting up from my recliner to help her not fall off whatever she was busy climbing on, and then there's all the other things.. changing diapers, more milk or juice, food, etc. and so often I'm so weak and nauseous, we just sit on the floor together for her to eat! I'm teaching her terrible habits do to my limitations, it just is so frustrating. I feel like I just can't do this and at times, I just want to cry, but crying makes me feel worse too, so it's not worth the tears to have heavy chest feeling, SOB, and adrenaline rushes afterwards! So that's why I'm venting here I can't even have emotions with this stupid illness. At times, I have seen God work in my life in so many ways and how He continues to take care of me (my neice does laundry each week and the vacuuming as these are impossible tasks for me right now), which I thank God for, but I still would love to be healthy and praising God in other ways besides my prayers in bed. Sorry to keep ranting on, I'm just feeling really sad right now

Thanks for listening.

God bless,

Tammy

Thanks for the input. Glad to know I'm not the only one with this "minor" wierd symptom. I thought that maybe I should try not to cough when that happened.. but sounds like I should just let my body do what it wants to do.

Tammy

Hi Everyone,

Just was wondering if anyone else gets this feeling... I was falling asleep last night and I suddenly got this sensation/pressure in my neck/throat like I needed to cough (not sick though) and at the same time my pulse raced really fast for about a minute or less and than it beated normal about three times and then again got the sensation like I needed to cough and again my heart raced (Like 3 beats a second so whatever that comes out to). Just freaked me out... I think I've had the sensation many times, but never realized what was happening until I decided to feel my pulse last night!

Thanks,

Tammy

Hi LindaJoy,

I would be scared too! I can tell you that I've heard of people being taken off of both BB and CCB and other than withdrawl type symptoms (more severe for those of us) it goes okay - but some people have problems to, so it all depends. I guess my suggestion would be to keep some on hand for when your tachycardia gets really bad and maybe on your own, go off of it a little slower than they are suggesting if you have enough pills to get through... that's what I've done with med changes, I just go about it a lot slower than they recommend because so often my drs. don't seem to realize how sensative I am to med changes/dose adjustments.

Hope it all goes okay for you.

Tammy

Thanks for the interestingly funny story! It almost sounded like it could have come right out of a humor movie scene!!!

-Tammy

Hi Rebecca,

The reason the nurse said to plan on about 3 hours is that the TTT varies so much for each person... they estimate the longest time so your covered. Mine took the full 3 hours from check-in to release. First they had a hard time starting an IV line and then they were deciding if they would do another line that would be feed up a vein to my heart (not sure what that was about but they never did it?). Then once they get you all set up, they move you into the room that monitors you while they do the test. Since I have presyncope symptoms, I never actually passed out, so I stood there for the full 45 minutes (board out of my mind staring at a wall feeling very exhausted). Then once your done and they remove your IV line they make you rest for a while until your HR and BP are down to where they are comfortable in releasing you. Thus the reason for the time allotment.

Best of luck with your test

Tammy

Hi Greg -

I wish I had some advice to help you out with. Personally, I ended up quitting my job as my supervisor was getting irritated with all the days I was gone from work being sick and rather than being "let go" from my job, I resigned before that could happen. I'm hoping to some how be able to work from home at some point, but right now I'm just feeling too sick constantly to even pursue that. My husband has had to take on extra work to make up for my inability to work, which I feel bad about, but there's nothing I can do about it - I guess acceptance is a huge part of "coping" with a chronic illness . I don't know if your wife is able/wants to do that, but it's not the worst thing to switch roles from what's typical... I have a few cousins who are guys that due to their health can't work and are stay at home dad's and it's working well for their families. Every family is different and what works for one may not work for another as all situations are different. I'd suggest applying for disability, but from what I've read on this forum, that is a huge struggle and not easy to acquire.

Don't give up - you are not alone. Take each moment of each day as it comes. Your illness is something you can't control. Even though you can't take a month or two off to regroup, try taking a 1/2 hour each day, by yourself, to just relax quietly - meditate or pray or whatever it is that calms you.

I wish you many better days ahead -

Tammy

Hi -

I'm just curious if anyone gets some relief from their symptoms with a massage? I've had massages twice and it seems like it helps so much... but I can't figure out why this would help my symptoms. Sounds kind of weird, but it really seems to help some...

Has anyone else had this experience and if so, any ideas why it helps?

- Tammy

Hi Amber,

It's so wonderful having this forum - all of us who for the most part don't look too sick, even though we feel like death most days-- I sometimes wonder if it'd be easier if we looked as sick as we feel!!! I guess for the most part, people aren't very understanding in a lot of ways, and all too often, if they haven't experienced what a person has been through it's difficult for them to be compassionate about it. I was recently watching a talk show and this lady was on that had been extremely obese and she was talking about how people would laugh at her and make comments that she could hear about her body. She said how those people are just mean and they don't realize how she has feelings and a heart too. I guess everyone deals with judgemental attitudes in someway or another It's sure not easy, but in someway, maybe if one good things come out of all this, it's that we are very empathetic to those who are suffering in so many ways.

((Hugs))

Tammy

I just read something on this recently... maybe related to this part/type of POTS thing... Here's where I read about it:

http://hyper.ahajournals.org/cgi/content/full/45/3/385

I will keep you in my prayers for your tests to go well and that they may find something to help.

(Hugs)

Tammy

PS I enjoyed your beautiful art work. You have a God given talent and it's wonderful you are sharing it.

Pippa,

Welcome to our "special" group of friends! I'm sorry you are suffering all the horrible symptoms we have to put up with and how it affects our lives. As for your pregnancy, how difficult that decision must have been. I guess I've been told by my doctors not to get pregnant but they've never told me I could die from it, just that most people who have this have very difficult pregnancies.

You are not mad and difinitely not alone. We are all here to support each other with all the ups and downs this brings us

Hugs,

Tammy