Hi, new here.

[TigerLily]

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. 

 

[Pistol]

@TigerLily - hello, and welcome to the forum!!! I love your name, especially since I have a ton coming up in my yard currently!!! --- Yes, what you describe sounds very much typical for dysautonomia. Are you on any meds? Proper treatment can help control these issues. It sounds as though your dysautonomia is not yet controlled. In that case our bodies are in a constant state of adjusting to triggers - whether it is standing up, eating, stress, overstimulation … everything and anything can throw us off balance ( that is assuming you even ever find this place at all! ) Most physicians focus on HR and BP control first and then tackle the myriad of other symptoms. Here is a post from this website that may be helpful: 

What is usually recommended for the type of symptoms you describe is increased salt and fluid intake as well as compression stockings ( thigh-high or hose are recommended and fitted by a professional as in a medical equipment provider ). In your case I would ask your physician about the increase in water intake due to your underlying potassium-wasting. 

As to you feeling this bad every morning: many people report that drinking a glass of water right after waking up and before getting out of bed helps them, others take medication such as a beta blocker as soon as waking up.  What meds - if any - have been prescribed for your condition? Finding the right medication - which is often a combination rather than just one - is critical but also a difficult and frustrating process of trial and error. A good specialist can be essential in helping you through this and I hope you have a capable and understanding physician!!! 

I am glad you have found this forum - there are many people on here that have went through the same thing as you and have valuable experiences to share. Be well!!!!

[TigerLily]

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. 

 

[p8d]

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.

[TigerLily]

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. 

[Sushi]

On 4/22/2020 at 5:37 AM, TigerLily said:

My PCP prescribed me compression hose but I was not able to fill the prescription due to the coronavirus:(

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 their house brand best for me as it is reasonably priced. 

[TigerLily]

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.