I'm New And Just Was Wondering About Some Strange Symptoms

[Tammy]

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!

[futurehope]

I just had one of my "attacks" yesterday and it's similar to yours, It just so happened, that I had an appointment with my neuro yesterday as well so I got to ask him some questions.

I get extremely weak, extremely anxious, nauseated, have to empty my bowels, sometimes extremely woozy, feel like I'm dying, etc.

I decided I am probably hypovolemic at this time as well as probably dehydrated as well as having my ANS going crazy.

I quit taking my VERY strong prilosec since I think this is not helping. Also, I drank 1/2 glass of baking soda in water to get a bunch of salt in me, and I drank a lot and I took 15 mg of hydrocortisone (a hormone I had in the house because my endocrinologist knows that I react poorly to stress).

My endo said it was okay for me to take the pill under the circumstances.

All things I did were fine and good according to two doctors I asked. I would probably respond similarly if it happens again.

I feel sorry for you having this as it's awful - I know. I felt the need to respond to you as I understand how awful this is.

In my case, I have just recovered from a stomach flu and I think this contributed.

[nadine]

My symptoms are the same. When this happens, I lay down with wet cloths, fans and fluids asap. I have this when bp goes up or down and when low on fluids. I am also having a hard time finding the right medication treatments due to sensitivities. Some days are worse than others.

I am also learning about all this.

Welcome

[mom4cem]

My b/p can go up also during an episode. My hrate typically starts to go up and stays up then gradually goes down. Chills or bathroom runs also occur at times.

Did they tell you what the results were of the TTT? Did he suggest any type of medication or treatment plan?

Welcome to the group

[JanetM]

Hi Tammy and welcome.

I have just started to come out of a really bad attack that has lasted 3 weeks. It has been awful. I would discribe it as internal shakes with severe pain in my lung and chest area, rapid heart rate of up to 164 etc..

I hope you get some answers soon and find something that helps. With me its rest rest and more rest that seems to get me back on my feet.

Best of luck and keep us posted on your progress.

[AJVDK]

Hello and Welcome!

I have had many to the same feeling you have. I was told I had IST. I later found out I had POTS. I had to ayo, and Cleveland for someone to get I had more then IST. My EP doctor always thought I was crasy when I would talk about the feelings I had. But now two years later and seeing all the doctors, that smae EP doctor now is treating my for POTS, and now understand that these feeling are due to the POTs.

I hope you find the right meds for you. When you have time you should go to this:

http://www.dinet.org/what_helps.htm

theres alot of things that you can talk to your doctor about. In fact my doctor and I wnet thought this list kind of trail thing but I am know getting alittle more energy.

Good luck with everything!

Amy

[Jersey Girl]

I'm sorry to say that these strange symptoms were and still are sometimes the worst part of POTS for me. I was pretty much bedridden for 6 months initially and have tried to learn how to cope with support from this board. Welcome! Martha

[Guest tearose]

You are not alone and you have already heard much of what I would share too.

Just wanted to add a welcome too!

best wishes, tearose

[bttrflyamby1981]

Hi and welcome!

Amber

[Dizzy Dame]

Hi Tammy, and Welcome!

As you can see, many of us get these same symptoms. When I have these attacks, I lay down and elevate my legs and meditate. I have a string of prayer beads that I count to take my mind off of what my body is doing.

I've also learned my triggers for these episodes (too much exertion, heat, chemical fumes such as bleach or paint, tomatoes--I have a latex allergy crossover). By avoiding my triggers, I can usually avoid the more violent POTS episodes.

One way to figure out what your triggers are is to keep a journal. Write down exactly what you were doing that day before an attack, and over time you might begin to see correlations (that's how I figured out the tomato and paint).

I'm sorry you have to be here, but I'm glad you found us!

Hugs,

Lauren

[pcola2pa@netzero.com]

I too am a newbe to this problem. i think the worst thing for me is being soooo tired all the time. is there no way to get energy? hope everyone is having a good day and thanks for being here for us all to talk.

keep smiling

jody

[mvdula]

OK. I know I am responding to an old post - but some of the symptoms described are what I have been wondering about. I have no POTS diagnosis as of yet - just a good cardio ep who suspects it. I actually have been feeling pretty normal overall. So, here is my main concern:

When I exert myself, i.e cleaned the bathtub (and tile wall) the other night (kind of testing myself out I think), I tried to sit next to it, go slowly, etc, but it does require a good amt of exertion - esp considering how dirty it was - here's how I end up:

Very tachycardic - this lasts at least 30 minutes after I stop! Not sure of hr initially, but stayed around 100+ after sitting (20 mins after I stopped)

Feel weak and shaky - this diminishes but only after about 30minutes.

Fatigued

Hot - can't cool off.

Awful feeling like my body is wired/overenergized - but exhausted.

Become anxious bc I feel so wrong - but do have some control over anxiety - does not become panic at this point.

Honestly, it has been so bad, I felt like I was dying.

Also, that night, I kept waking up (normally I sleep fine).

At this point, this is my MAIN SYMPTOM.

Anyone else have this as your main symptom?

My other - more minor - are: heat intolerance (last summer only - we'll see), can't eat large meal (feel awful for 1+ hrs afterwards)...everything else is so minor, I can deal with it.

[mvdula]

forgot to mention - when i took my bp (after 20 mins sitting down - still feeling awful) it was around 132/87. At EP office while calm I am usually 110/70.????????

[juliegee]

Hmmmmmm. Very interesting thread. I realize it's old...but new to me. I'm going to add a new twist. I have the same "attacks" and have wondered if they are anaphylaxis. I am being treated for Mast Cell Activation Disorder, MCAD, (based on clinical symptoms) and am in the midst of seeking a more definitive DX with a masto researcher. I have used an epi-pen several times during these episodes and ALL symptoms have stopped. At least temporarily. Sometimes they resume...I assume I need an epi-drip at that point.

My attacks start a bit differently each time, sometimes a tightness in the throat, then pain when breathing in, followed bylightheadedness, tachy, high BP for me, like 130/100 (I'm usually 90/60). I feel lightheaded, start shaking uncontrollably and have a horrible attack of "D." During the last episode, I noticed my hands and feet turn deep purple. I work very hard at staying calm, but feel as though something dire is about to happen. I take benadryl, zyrtec, sometimes prednisone, and an epi-pen, right before I lose consciousness. The epi always stops ALL of my symptoms. If this were just tachy or a panic attack, the epi would worsen things, right?

I noticed so many of you with similiar symptoms, also followed by fumes, etc. Any strong cleaning chemical, especially oil-based, can set me off. Am I on to something or are we describing different things?

BTW, my allergist, formerly of Mayo, says that skin rashes (although I do flush & feel hot like many of you) are not necessarily a compnent of anaphylaxis and a high BP (rather than a drop) sometimes occurs. He believes I am experiencing anaphylaxis. Has anyone else ever considered this?

Julie