TigerLily

I just orderd a heating pad to wrap my feet with. They are getting so cold they hurt. 

1 hour ago, PotsieCrocheter said:

@TigerLily  Very sorry you are going through this, all the best. You finally solved my mysterious “flaming” red ears, thanks.

Oh you have the red ear thing as well? 

Do you ever get clear nasal drip with your attacks? 

On 3/26/2020 at 7:07 PM, cmreber said:

I know for me, when I first was diagnosed with POTS I was experiencing incredibly horrific panic attacks (seemingly out of nowhere), the typical increased heart rate that all of us have, huge blood pressure spikes when standing up, and terrible pre-syncopy. I finally went to the mayo clinic to see a neurologist, and after lots of testing, they determined I have HyperPOTs. The biggest indicator for me was the significantly elevated blood pressure upon standing, whereas low flow POTS people seem to have blood pressure that drops significantly. Now, I *do* get low blood pressure too from time to time, which can be confusing (though I believe it is due to blood pooling in my legs) but, especially unmedicated and in the beginning, my blood pressure would go really really high. 

Oh d*** this sounds exactly like me:(

Who diagnosis this? 

Yes they gave me IV fluids. And everything normalized after that. I have had episodes at home though. 

My husband just told me my ears was fire engine red. This is an issue that started in 2008. Just my left ear would turn red. And one day it just stopped. Well now that's back. He noticed so I went and took my blood pressure. 128/100. So now I know my red ear directly correlates with my blood pressure going up. A doctor once told me yrars ago the red ear thing is called Erythromelalgia. I sometimes got it in my feet too.  My neurologist believes I have small fiber neuropathy. She did say my white matter disease os stable so there's some good news:)

I am not sure what happened but I sm greatful for the time I had where I felt totally normal. 

The last week has been awful. All of my symptoms are back. I was in the ER again with a BP of 163/ 118 and a heart rate in the 150s. 

My digestive system is on the fritz again as well. And I swear my left foot feels like it's hooked up to a tens unit:(

Im actually seeing my neurologist tomorrow.  

A while back I may have wrote about my coat hanger pain. We things got worse and worse and my normally painless vestibular migraine turned into very painful migraines. So bad I was throwing up. 

I ended up seeing my old doctor because the ER notified them I was in. He had me come in and I told him that my head had been aching for a while and my arms were going numb. I thought I had a punched nerve or nerves in my neck because my arms kept going numb. 

On a whim he started me in Gabapentin.  And holy crap what a difference it has made. My occipital neuralgia is gone. Vestibular migraine manageable. I have started sweating again and my hair has stopped falling out. 

My coat hanger pain is way better and I have not had near as much OI. 

My memory and attention are considerably better and I have not had derealization or my alice in the wonderland episodes but maybe 3 times in the last month. 

I can't explain why this drug has worked so well but it has. 

Edit: I did post about starting this medication a month ago. 

I had such a headache I ended up in the ER throwing up in extreme pain. I have an issue with my arms going numb periodically but lately it been all the time. 

Doc says I have bilateral cervical radiculopathy and the spasm in my neck and shoulders is quite severe. 

Im wondering if this could be the root cause of my issues. I will be having a nerve conduction study at my neurologists office soon. 

My doc put me on gabapentin for now and I only took it once last night and this morning my muscles were cool to the touch and not spasming. I guess I did not realize how bad this has gotten. 

16 hours ago, RecipeForDisaster said:

This really sounds like me!!! I hope there’s something that can be done about it. My ears definitely do this at night, too. 

I actually got it tonight pretty bad. It's just the weirdest thing. I first noticed it in 2008. I could go years without it happening then boom. I sorta wonder if it's a neck injury thing because shortly after it started I started getting bad neck pain and doc told me it was occipital neuralgia left side and pretty sure I have a pinched nerve in my cervical spine on the left side. 

I just got my test results back from my gastric emptying study. All of my stomach troubles are actually caused by gastroparisis:(

I get this from time to time over the years. It's just my left ear. Turns bright red and burns and gets very hot. Kinda thinking it might be related. 

I have this head wooshing. Especially when I bend over or turn my head to side in an extreme way. 

Adrenaline rushes is what I first called my episodes. I have had so many that they no longer cause me the complete panic attack they used to cause. If you find any help for this I would love to know about it. 

Yes. I used to have it in my legs especially at night. But then i got it in my torso. Goes right down the middle of me and feels like a low electrical current. It still comes and goes but for a while i thought it would just stay forever. 

On 4/28/2020 at 8:32 PM, Abe said:

Not sure.  I have stopped checking that for a while now but I know it is one of my problems.  I take a lot of coconut water and pedialyte so I think I'm okay.

Your attacks sound a lot like how I wake up just about every morning:(

My stomach on fire. Hard heart beats. Usually when I wake up with it my BP is really low and it gradually goes up. I wonder if my BP goes really low and suddenly my body kicks in to bring it up and it goes into overdrive. 

Oh man this had been my life for months:(

I hope it gets better but every time this happens it worse and lasts longer. 

Now that my husband is home all the time he is disgusted with how much I sit around.

And that overstimulation sucks. Can't hardly even listen to music.  And now that everyone is home all day I am on the go picking up after people now. 

One thing I have developed along with other sensitivities is a sensitivity to the smell of bleach. It will send me right into a full attack. Dizziness, shortness of breath, high heart rate and burning lungs.  This a new thing in the last 6 months or so. I don't have asthma but it felt like what I imagine an asthma attack feels like. 

18 minutes ago, Sushi said:

You can find good ones online. I use a company that will help you get the very best size using a phone consult. It is Bright Life Direct--they carry many brands though I have found there house brand best for me as it is reasonably priced. 

Thank you. I will check that out today. 

1 hour ago, p8d said:

Until you can get in to see a specialist I highly recommend @Pistol’s advice about fluids/compression hose (you can order them online, even prescription strength) and get the book The Dysautonomia Project.  It has wonderful advice on how to deal with symptoms, sections for the patient, sections for a PCP and info for family/caregivers.  When I was first very ill, on the advice of my specialist, I always drank a 16 ounce glass of water or Trioral rehydration salts 15-20 minutes before getting out of bed, it really helps.  I also put on my compression hose immediately on sitting up.  As to a cause that’s still a big unknown for many.  Some of us develop autoimmune diseases that cause/contribute to it but not everyone and the only autoimmune tests that seem specific to dysautonomia are not commercially available in the US yet. Keep asking for an ANA test to determine if you have an autoimmune disease—they are notoriously difficult to detect.  Treating the underlying autoimmune disease, if you have it, helps but there is no cure as of yet.

Sometimes this goes away on its own. But if I get sick and run a high fever it comes back. I got flu A and B at the same time in January right after having surgery. That's what triggered it this time. In 2008 I got the flu and developed pneumonia. That was my first big flare. 

On 3/16/2020 at 3:15 PM, Abe said:

Anyone has an idea what kinds of symptoms differentiate Hyperadrenergic POTS from other types?  I was diagnosed with POTS in 2017 but never found out what type it was.  The last few weeks it has been a very bad burning sensations all over my body especially in my stomach, excessive trembling/shaking, different kind of sensations all over.  I am only taking a benzo right now because I haven't done well with any other medication. The last few weeks has been really miserable.  Thanks.

Do you ever have low potassium whit this? 

Lately I am feeling this bad every morning. My PCP prescribed me compression hose but I was not able to fill the prescription due to the coronavirus:(

I was on inderal last year but my BP kept getting too low on it. My BP has always run low on average. But sudden drops in my potassium cause very high BP. Makes for a wild ride.

I have notice sleeping on an incline can help but it's hard to do comfortably. And Zyrtec has slso helped me a lityle bit gor some reason I don't understand.

My goal is to find a doctor here in Michigan that has a good deal of experience treating this. I would also like to figure out the cause as well. 

I have dysautonomia and I think I have had it off and on for many years. My triggers are illnesses and apparently surgery and possibly stress. I was also diagnosed with fibromyalgia and a condition that causes my kidneys to waste potassium. 

This condition has caused me to develop anxiety on top of things. 

The list of symptoms is long but the worst is just the simple act of waking up in the morning. I feel like I am coming undone every morning and I don't know how to make it better. My heart rate skyrockets the moment I wake up. It's vety distressing. But if I am startled awake it's even worse. I can't quite explain but my whole body feels weird and weak. I have to move slow and get up in stages. Im scared every night to go to bed. I used to love sleeping:(

Eating also makes me feel weird followed by tachycardia. I have no idea why.

In the last few months I developed digestive issues and had to have my gallbladder removed. No stones or anything it just stopped functioning.  The gastroenterologist said it happens with autonomic function problems. 

I have had these what I will call flares a few other times but each time is worse than then last and losts longer.

Well that's my story. Life has been pretty sad and I can't do the stuff I once did and I am only in my late 30s. 

Does anyone every feel like a weird humming or vibration in their torso? Like it goes right down the middle of me.