Home From Er. Need Help Sorting This Out.

[angelloz]

Long winded question so please bare with me. I haven't had a spell this bad in a year. Started out feeling ok for me and headed to Target. It is our first cold snap and I don't do well with hot or cold so heated up the car first. While in Target I started to feel really bad...tried to just get back to my car but collapsed in an isle. I didn't pass out. Trouble breathing, stomach upset, weak, and honestly felt like I was draining away. In the ambulance blood pressure high for me. 165/85. I'm a 90/60 person. heavy feeling in chest, some weird heart beats, forceful heart beats. They checked things out, gave me fluids, slightly abnormal EKG but pattern they have seen on mine before..chest x-ray etc..

Now, when I have low BP, fluids etc.. I feel tired, gray vision etc..I know the drill. I lay down hydrate and so on. But I don't know what these episodes are, they feel like my whole body is failing.

I have had a doctor suspect mast cell disorder too, but mast cell medications have not made a difference. I am home but feel on the brink. can't really stand up without symptoms coming back but don't feel so well lying down either. Has anyone out there had spells at all like this? I am thinking a mast cell reaction to the extreme cold? So very scary.

[gjensen]

I am sorry that you had this experience.

It is difficult to know exactly what happened. It does not seam like a mast cell reaction to me, but I could not say that it was not.

I do wonder if the high blood pressure is not a response after, rather than part of the actual event. I dare not speculate too much, because it isn't helpful.

Personally, I would want a 30 day monitoring to see if I could catch a similar event. I would at least discuss it with my doctor.

I am sorry that I do not have anything helpful to add.

[Raisin]

So sorry for your feeling poorly Angelloz. I had super forceful beats before and a blacking out type thing which when I look back on it, it seemed more like a Bradycardia. I think GJenson may have something there with a monitor. Atleast then they and you could see what is happening when you are feeling so yucky. My vascular guy said to take my blood pressure when I feel awful but also to take it when I feel good to see if there is a difference there.

I don't really have answers but I sure hope you are up and going again real soon. I am assuming that you will be calling the doc who monitors/treats your Dysautonomia. God Bless.

[JenniferInOhio]

Vasovagal response? I'm thinking the higher blood pressure in the ambulance was a result of being scared at what happened in the store.

Symptoms are:

Blurred or double vision

Cold skin

Difficulty breathing

Disorientation

Fainting, change in level of consciousness, or lethargy

Headache

Irregular heart beat

Nausea with or without vomiting

Pale skin or pallor

Pins-and-needles (prickling) sensation

Slow heart rate (bradycardia)

Sweating

[Bigskyfam]

Same thing happened to me tonight for first time. Heart rate dropped to 60s and BP was high 140/90s... I had just clocked out from work. Hubby picked me up and I came home to sleep.started with Vertigo, I've had pots for one year and I've learned not one of us is the same... And our symptoms aren't even consistent. I'm glad you got checked out and I wish there was monitoring for us to help us and the research in the wonderful world of dysautonomia

I'm chalking my episode to the fact that it's below freezing here. Although I was inside and warm. Maybe I got too hot. Sigh...

Feel better!

[sue1234]

And what happened to you is exactly why I haven't walked around stores in 8 years. I get that feeling if I am upright too long. This is what I think happens to me, which may or may not have happened with you.(I have hyperPOTS):

I'm upright, everything is ok for a little while. The blood begins to pool in my extremities, not a whole lot, but enough. Less blood is going through my heart and reaching the brain. The receptors notice the lowering in blood pressure due to the lessened volume. The body sends out adrenaline to cause vasoconstriction to get more blood flow. The adrenaline causes and increase in blood pressure AND palpitations. You feel really weird and BAD, and get short of breath.

So, the higher blood pressure, for me, is due to the physiological response to the adrenaline. All that adrenaline, besides the physical response, causes a mental response of being in a heightened alert situation, or better known as, anxiety . I cannot stand all of these symptoms, because it takes hours and hours to recuperate back to my "normal". That is the whole reason I don't go shopping!

[angelloz]

Thank you all for responding! It helps so very much to have others understand what this life is like. Blessings to all. I live in a rural area and my GP manages things for me as best as she can but this is way out of her realm, I have been to Mayo for testing but to get help on a regular basis is not possible. I really need to find a specialist closer to me to work with my GP. KU Med center is an hour away but so far haven't found the right doctor there,

Sue, you made me think about this. i have noticed my bad episodes happen when I am having super red hands, ( pooling I assume. )

Raisin, don't know what my heart rate was at the time, at the hospital went up with standing so they treated me for dehydration.

I just wonder what I did or didn't do to make it so bad...thought I drank and ate like usual...a mystery. Maybe the change from super cold outside to a warm store causes even more or rapid vasodialation. Is that even a term?? Always a mystery.

[lfreem02]

I do think there is something with the weather. I started a flair up last week, and am still trying to get it to calm down. Monday and Tuesday were the worst. I have had really weak legs, flu like feeling, heart rate in the 50's and 60's, my pupils were dilating excessively, blurred vision, brain zaps, and I have had a headache every day. I love the cold, because I tend to feel better, but I think the time change made things worse. The sunlight and then headlights on my way home from work has been horrible. A couple of my friends have had migraines this week.

Hope everyone feels better soon!

[spinner]

Sorry about your problems. Scary but also annoying.

Going into a public place is tricky sometimes isnt it? Cant put a finger on it. Could be the ventilation system, the sudden bright lights, or even something like sitting in a car for along time and then suddenly "exerting"--BP spike.

Then too, we tend to grab fast food or drink or cofffee when out, and the MSG in everything these days can cause the EXACT type of flare you describe.

Hydration is crucial. I like the powerade ZEROS to maintain electrolytes.

Are you using magnesium/b12? Supplements? Some may help, experimentation.

There are other posts here regarding adrenal issues. THe average doc doesnt do a saliva test,

which a holistic doc will. Your cycle could be out of whack.

You also could be hyperventilating without knowing it. Illness comes out weird ways. Our bodies react.

Breathe deep from your gut, not high in your chest.

Finally, not "suggesting" anything but klonopin has stopped these kinds of flares for me. Some say it

is habit forming, i have not found that. But then again, i use it as needed, not everyday.

[spinner]

I forgot to add that you have to be aware of histamine and excitotoxicity as a trigger. Google these in relation to BP, neurology,

circulation, etc.

Also, think about your circulation. You get out of a car and suddenly walk into a building. Thats a circulation issue. I wonder if

doing a few deep breaths and knee bends etc might help before initiating a brisk walk like that.

[imre]

Cold weather could very much be it. It affects me a lot as well. Cold weather constricts blood vessels and will raise your BP. Also, and I assume you are affected by the Polar Vortex, it is a huge drop in temperature and could really aggravate our symptoms because of sensitivity to weather change.

One thing I have noticed that helps me is to wear a neck warmer, or scarf and breathe through that so that I a breathing in warmer air. I can't really tell you why this helps but it does for me. Hand warmers also are helpful.

[angelloz]

Great thoughts and tips! Will try breathing through a scarf and revving up circulation after setting. The odd part is feeling like you will lose consciousness with weakness a heavy feeling and so forth then finding out your BP is high. Also, right before going down I feel like I am trying to walk underwater. My diet is very limited due to intense migraines so never eat out...I sure miss that. Also just discovered I have a UTI...so maybe body can't handle that? Wish we could all find our magic bullet and feel like we used to.