Tammy

Dear Tears,

We are here to support you and completely understand how your feel. I get so frustrated having to ask for help in so many areas of my life -- grocery shopping, house cleaning, day care, etc. I so miss being able to take care of all that myself. Other let downs, like the past weekend I was unable to go to a wedding and my husband wasn't willing to go by himself - so it made me feel like I was holding him back on an enjoyable evening - and then the next afternoon we had a graduation party that I was able to tolerate for about an hour and then had to leave, which I was too weak to drive myself so he had to leave with me and it just totally sucked having that happen - but yet I was thankful to at least have been up to getting there for that short time, it's such a double egded sword at times!

I keep trying to just be thankful to have people in my life that help me out and hope that maybe in someway they feel good being able to help out, but it's hard to keep a positive attitude many times.

Just remember, your not alone in this and from what I've experienced, for the most part, friends and family don't mind helping out when I state my need in as positive way as possible, ie. complimenting them on how good they are at finding great prices on clothes and that if they run in to any great buys on cute girls 2t clothes it would be so helpful, or stating how much fun my daughter has with them and if it be okay to watch her for a while as I need to rest, etc. Just a few "coping" ideas that may be helpful.

- Tammy

I'm not sure if I'm lighter, but would guess that since when I have really bad surges, I don't feel well enough to eat but yet I always have to pee like a million times through them, that I probably do loose some weight due to fluid loss????

Tammy

Susan,

I completely understand! I feel/think about the exact same thing. I have a 16 month old daughter and during the worst moments of each day, when my symptoms are the worst and I feel like I'm dying, I pray that God will take care of her until I'm feeling a little better again. I do worry about how I'm going to do this, as right now she's still in her crib, so until I'm able to get up in the moring, she's pretty contained in there, even though not always happily, it prevents her from getting into something she shouldn't, but in a short time, she'll be getting around the house to quickly. We haven't come up with any ideas as to how to deal with it. I've mentioned to my husband, that we might have to have him drop her off at a daycare until I'm up and functioning, but most days I'm not well enough to even leave the house if I'd have to go pick her up from a daycare, so I just pray he'll figure out a way to work mornings from home once that time comes. It just is so scray and frustrating as everyone I know doesn't understand this and would probably be irritated if we'd need to do daycare even though I'm an at home mom, but I don't know what else to do????

Lots of hugs,

Tammy

Wishing you a healthy day as possible.

Tammy

How funny this post was here today, as I just got back from a gasterologist and he scheduled me for the exact same procedure for July 6th! I was really anxious about it until I just read all your posts as I'm so sensative to any medications that I wasn't sure how I'd do with the relaxing meds they give you before the procedure. I have major problems with the gas they give you before a dental procedure, so hopefully it's not the same stuff. Jacquie - Thanks for starting this posts.

Also, for any of you who've had this already done, was anything ever found or is this just another test to rule out one of the symptoms that's actually due to Dysautonomia?

Hello! I've noticed in a few posts, that sometimes someone will mention how even before their illness started, they were introverted. So besides the symptoms that cause us to be less social, would you by nature consider yourself introverted or extraverted. I have always been fairly shy so would definitely consider myself interverted. I've sometime wondered if getting stressed out easily and being introverted my entire life had made me more prone to this illness, so just thought I'd do a little poll on it.

Thanks.

Tammy

I've been told I'm anti-social by a few of my in-laws and it momentarily makes me feel very sad as to how they don't understand that it's not me, but how my symptoms affect my ability to be social, but once I get past their remark, it really doesn't bother me because I feel too sick for the most part to dwell on it. I don't feel anti-social, I just don't feel well enough for company or to go out and about most of the time, so definitely can relate.

Though I do miss my co-workers that I enjoyed working with as we really had fun together, but I wouldn't be any fun to be around now as I don't feel up to laughing most days either, so being a "hermit" seems to work better for me now too.

I know what you mean by enjoying a week without anything going on - I'm dreading this week, as I have dr appt, wedding, and graduation party to try to make it to, but I have a feeling I'll miss most of them

((Hugs))

Tammy

Oh so cute! I love dogs so that was really fun to watch!

My husband has nicked named me "the putz" as I'm very slow at doing anything requiring a little energy. He says it in a sweet way, so I've accepted being "the putz"!

adrenaline rushes... the whole heart racing with nausea episodes leave me so weak and ill...

I'm not sure what the story is, but I try not to judge people either way. If somehow, even one person could get real help through this type of testing, this long thread will have been worth it, whatever the motive may have been. That's just my opinion.

Tammy

Amy,

Hopefully your doctor will be able to help you feel a little better soon - it's so hard when they don't know what to do to help! Prayer seems to be the only thing that helps much of the time, so I will keep you and your mother in my prayers-

Hugs,

Tammy

I guess mine is low when it should be high and high when it should be low - go figure! My sleeping pattern is so messed up, so I would guess that contributes to the tests results or the cortisols levels mess up my sleep - one or the other!

Tammy

Thank you all for the input. I have tried a few beta blockers, such as Atenolol and Pindolol. I've also tried Zoloft, Paxil, and Buspar and so far I'm so hypersensative to medications, they just make everything worse.

The only meds I take on a regular basis are Synthroid and Diltiazem, both which do nothing for the adrenaline rushes either way. I've talked to my EP so much about them and since I'm very shy and don't want to keep bothering my doctor since everything he tried (so far about 5 different meds) haven't worked I'm not sure how to go about it. I would like to ask him about Xanax or Celexa - thanks for the suggestion.

Thanks for all the support and I'll do my best to be supportive to others here also as I really do understand what we all go through and the need for friends who care and don't judge.

God bless,

Tammy

Hi Everyone,

Just needing some support! I'm having constant adrenaline rushes (usually I get little breaks inbetween them but not today) - first the warm rush sensation through my body, then the nausea, then the chills, and once I warm back up (I have to sit in front of a heater even though it like 75 in my house), I rest for a few minutes and than it all starts over again... warm rush and so on. This just scares me so much. I just wish there was something I could take to help me though this but my EP just tells me to meditate through it (I tend to pray which helps with anxiety from my symptoms) but I just can't believe there isn't something out there that could help my body at least a little bit.

Anyone with support or someone who has experienced this and maybe had some relief with some sort of meds would be appreciated.

God bless,

Tammy

What I find interesting is that many people with mental illness have SSDI benefits but they are able to do more things than we can on a daily basis, but yet we are not considered sick enough for benefits. It just really doesn't make any sense. I guess we should stop being fighters with our illness, go nuts, and than after spending time in an insane asilym, maybe we'd get some benefits from SSDI!!!

Hello! I've recently began working also with a natureopath doctor and was wondering if anyone has ever seen one too and how their experience went. So far, as I've only seen her twice, she done a saliva test for adrenal function - which the tests showed I'm high on DHEA, low on insulin, and my cortisol levels are too high at some times of the day and too low at others? So she wants me to try an Adrenogen support vitamins, regular vitimin B complex, some sort of berry tonic, and rescue remedy. She also did a micro-current therapy on my adrenal glands this past saturday which maybe? helped a little. I'm just hoping that these things won't interact with my regular medications....

Again, if anyone has worked with a natureopath doctor or has knowledge with these things or has tried any of the supplements, I'd love to hear about them.

God bless,

Tammy

I'm not sure how far of a trip your able to make, but in Minnesota, the Mayo Clinic in Rochester works with Dysautonomia, but you would want to ask them specifically to see you in the Autonomic Lab, rather than going through what I did, which added another week to my testing as I started in the Heart/Blood Vessel department and didn't accomplish anything... they thought it was muscular, so I went from dept to dept only to leave undiagnosed, but found out later which department I should have asked to be seen in.

Good luck with finding a doctor,

Tammy

I'm so happy for you and also happy to hear your enthusiam over your achievement. Always give yourself a pat on the back for any small accomplishment in your day because they are not really small at all!

Happy Happy Birthday from all of us to you,

We wish it was our birthday, so we could party too!

(Okay, so maybe we don't feel up to partying, but it's the thought that counts!)

Hope you're having a stress free day.

Tammy

There's so many things that I have learned from everyone's symptoms here that I'm not alone with am so glad for the campanionship... the old saying "misery loves company" comes to mind.... but I've done a search on this one and haven't come up with any posts related to another one of my frustrating symptoms....

Okay, this is problaby part of my exercise intolerance, but has anyone else ever become very ill with adrenaline surge, nauseous waves, chills, etc... after being intimate with their spouse/partner???? I'm to a point of avoiding my husband at night because I know how sick I get afterwards so I try to wait until he's asleep before I go to bed by him. I know he has needs but I really don't know what to do anymore... needless to say I absolutely have no desire to be intimate knowing how severely ill I'll be afterwards.

Help please... if you can relate at all to this, I'd love to hear that I'm not alone in this also.

Thanks,

Tammy

Key component - baby steps. If you walk for two minutes and start feeling symptoms, rest for a while. Than try walking another two, and again rest. I've learned over and over that I'm better off doing very small amounts of walking at a time with long rests between than going too long and paying for it for days! I try hard to tell myself that walking for two minutes is doing really well when I can because I compare it to the days I can barely get out of bed to walk down the hall to the bathroom, so each day has it's own achievements.

Tammy

Hi Jaime,

I'm so thankful you wrote about your experiences as just last night I was very sad as I was thinking about all those things. Some of the people closest to me have distanced themselves from me and when they do call (rarely now) and ask how I'm doing and I say "just okay", they kind of pause and seem irritated by my reply, but I refuse to say that I'm doing great when I'm not because that's just a lie. I try to focus on that there really is no way for them to relate, because if you haven't been down the road we have, it is impossible to understand it all - but in one sense a person would think that since they knew us before we ever got sick and remember how we were than and compare to who we are now (as far as activities we could do and now can't), they should be more compassionate than they are.

On Saturday, I was talking with my sister-in-law and she was telling me how her mom had back surgery and that her mom was frustrated that she couldn't yet do all the things she wants to do until she's more healed and how she feels like no one understands. So I said that must be really difficult and that I could relate to wanting to do things but not being able to do them. At which point my sister-in-law rolled her eyes with this irritated look on her face - basically telling me that I couldn't understand because I wouldn't know how that would feel! Ahh - I wanted to almost smack her but at the same time, cry. Thankfully we were on our way out the door at the time!

Oh well, I guess that's life -

Tammy

We are your friends! We share in your suffering and your hopes and we don't judge you when your not up to "talking" with us.

Hugs -

Tammy

PS. I've classified almost all my friends as "fair" weather friends - and try not to shed to many tears when I feel let down by them - it's not worth the stress and feeling even worse from worrying about it

Hi! I'm new to the site, not to the yucky symptoms, but have had a very difficult time finding anyone who can relate to what I experience so still not sure if this is what I have going on. I'm diagnosed with IST, Atrial Fib, but most of the time, the symptoms I describe to my electro physiologist, he just gives me a blank stare and shrugs his shoulders. He has told me typically people with my symptoms are difficult to treat, but has never verified what's wrong. I've done a TTT and since I get so nervous about having IV's, once they put the IV in before the test, I was so stressed, I don't know if that affected the test. (However, for some reason, I felt good once the test was done for a while) I've never had any other tests done for dysautonomia, but from what I've read, things like singing, blowing up an inflatible beach ball (did this for my daughter yesterday, but after about three breathes had to have my husband finish blowing it up as I got so lightheaded/weak), standing too long, and more... all affect me similar to what I've read about dysautonomia. So going back to the strange symptoms I get.... I get so many, but the ones that I'm wondering if anyone else experience is as follows: I get these episodes frequently that start with me feeling suddenly extremely weak, kind of an internal shaky feeling that makes me feel scared, and within minutes my heart starts beating irregularly - fast and slow - and than I start feeling like I need to vomit - than I get the chills and feel like I'm dying. I have taken my blood pressure during these times and it is typically high like 130/100, even though I usually run 90/60 or lower! So if anyone has had these spells, please let me know. Thanks so much for your input.

God bless,

Tammy

I'm currently on Diltiazem and Synthroid, but have tried numerous meds, that all seem to make me worse!