Syncope: I have some kind of syncope. Some days worse... - STARS

STARS

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Syncope

Jellychijazz profile image
•15 Replies

I have some kind of syncope. Some days worse than others. Start to black out about a minute after standing and begin to walk. If I don't immediately put my head down, sit, pretend to tie shoes(😆) etc. I completely go black. After head clears and I try to push on, depending on where I am, my chest gets tight, feel like I cannot breathe, cannot think straight, ache in neck and shoulders, weakness in arms and legs, to point of tipping over. When I am anxious, it is worse. When I am sick it is worse. Have been seen and tested by a Cardiologist. Nothing wrong. Been seen by a neurologist who referred me to be tested by a local facility that testes for autonomic dysfunction. Nothing wrong. Not dementia, not POTS, not vasovagal syncope, not autonomic dysfunction. At that point was told that I had a sensitive nervous system and needed to learn coping skills to live with it. Needless to say, I have pretty much shut down the part of my life that entails walking any distance. Need to fine a Dr who has knowledge of this issue, or be pointed in the direction of someone who does. I can't be the only person in the US who suffers with these problems. Thanks so much for listening!

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Jellychijazz
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Boeingbabe profile image
Boeingbabe

Poor you! I have been going through a bad year of almost identical symptoms. Had do many tests, they found I had a parathyroid adenoma but don't think it's giving me these symptoms. I reckon you have delayed orthostatic hypotension? Then u get adrenaline rushing in to compensate, Palps, sweats, crushing chest pain. Lie down when this happens with it feet up on the couch. Do a valsalva for the Palps whilst pulling yourself upward. Should help. Drinking a bolus if water sometimes helps too. I urinate like a race horse afterward. Gerontologist says I have a fragile autonomic system. Getting tilt table done after Xmas. I'm on midon ( low bp) and nebilet for angina type pains. Do u get migraines? Breathless at all?

Boeingbabe profile image
Boeingbabe in reply to Boeingbabe

It's so frustrating and scary, isn't it! There are at least 4 types of pots, neurogenic, hyperadrenergic, secondary, Nets, mast cell activation etc. Do the homework so u can ask more questions? I also get migraines and hemiplegic migraines. Make sure you're not anemic and get calcium, mag, phosphate checked. No harm doing a thyroid panel also. Do u get nausea? I'm in Ireland.

Jellychijazz profile image
Jellychijazz in reply to Boeingbabe

Yes. Sounds similar. I'll look up the info you provided. Although the tests did not show anything was wrong. The biggest issue is blackout, and then after the fact not able to walk and breathing is hard. So sorry if you are dealing with this as well.

Jellychijazz profile image
Jellychijazz in reply to Boeingbabe

Yes for chronic migraines. Almost daily. Imitrex works for migraine and helps with the blackouts. Doesn't seem that great to be taking so much. But it is what keeps me upright.

Boeingbabe profile image
Boeingbabe in reply to Jellychijazz

Just outta hospital. Sinus infection woke me with violent palps, vertigo, nausea, urinating like a race horse, fainting whilst supine, sweating all over with crushing heart, pressure in head and tinnitus. Discharged today after paramedics came. So, meds are eltroxin, midodrine, nebilet, vibramycin, stemetil, amytriptaline and nortryptaline for hemiplegics, vit d and ranopine. I too have fragile autonomic system ? Pots as per discharge letter

Jellychijazz profile image
Jellychijazz in reply to Boeingbabe

Keep me posted.

Boeingbabe profile image
Boeingbabe

I was also told not to get up straight away when waking, sit on side of bed. Drink 500ml water. It helps! Avoid caffeine, alcohol, stimulants. Eat small meals , cut carbs big time as they really have adverse effect. I get postprandial hypotension if I eat a big meal. I stay away from heated places ( so limiting) my extremities get so cold! So I'm wary of Raynaud's..... Mind your hands and feet. I reckon we've similar issues. I'll keep u posted.

Jellychijazz profile image
Jellychijazz in reply to Boeingbabe

So sorry. Yes. Sounds a lot like what I go through.

Jellychijazz profile image
Jellychijazz in reply to Boeingbabe

Yes. Please do. So sorry for you.

DragonsRreal profile image
DragonsRreal

That must be so frustrating! I mean, something is obviously wrong. I'm so sorry you're going through this.

Jellychijazz profile image
Jellychijazz in reply to DragonsRreal

Thanks. Very frustrating.

Jellychijazz profile image
Jellychijazz

Thank you

dwright12 profile image
dwright12

The same thing is happening to me! So frustrating. Last night I woke up with a terrible foot cramp! I had to get up and walk around. Finally went away, but from midnight until 5 a.m. no sleep. I've had tilt table test and was told to eat salt. Next doctor said to drink water (I keep it by my bed at night). Slowly get up ( always do this). Have a heart monitor installed in my chest (nothing wrong) had ablation for a flutters! I feel like someone ran over me.

Jellychijazz profile image
Jellychijazz in reply to dwright12

Same. So sorry you have to deal with this. Just had an echo on my heart. Came back perfectly normal. Stress test not completed because unable to walk any distance. Waiting for whats next. 🤔

dwright12 profile image
dwright12

Tomorrow visit with cardiologist! Left a message with EP doctor!

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