angelloz

I had this diagnosis also. they acted as though if it was mild, no real treatment was needed.

Sarah, Sending you warm wishes and hugs. I wanted you to know that I had a BMB after blood tests showed high tryptase. The biopsy was negative and really I did not find it to be that bad at all. I was lucky that they got enough and went smoothly. I have never had a spinal tap. Hang in there and don't forget any of your questions. I always get back home and wish I had asked more.

I had my blood volume done at the Cleveland Clinic on two separate occasions. The first time it said mildly depleted. The second time moderately depleted. Just told sodium, hydrate the usual. let us know if you get some better tips!! I can't tolerate many meds to help with this issue due to severe migraines.

Hello there, Very interesting topic! Way before autonomic issues... when I would get very upset and cry I would run a fever. One of my daughters does this too. Fast forward to 2010...and the autonomic diagnosis. Talking on the phone for some reason is very stressful for me and I often begin to feel terrible doing just that. I do have a mast cell disorder diagnosis from one doctor and learned that any stress at all can trigger the release of mast cells. I however didn't really improve with antihistamines and can't really tolerate medications very well so I don't really know if that is what happens when I get upset or not. I have read others say they cannot tolerate much emotional change good or bad and I am like that as well. All this has led me to believe something autoimmune is going on. Just know I have had this reaction also. I really try hard not to get to wound up...lots of warm...not hot bathes...deep breathing.... I believe this has an influence on my migraines as well. Hang in there! At least a good nights sleep!!!

So happy that things are turning for the better! You deserve it!

Oh my. My heartfelt sympathies go out to you. NOT FAIR!!! Let us all know how you are doing. I am hoping for good things from the orthopedic appointment. Blessings right back at you!!!

I absolutely feel agitated before a migraine. Now finding I have migraines and cluster headaches. .

Have an abnormal QSART. I get all over body itching when I get too hot.

I was told that low BP can effect breathing, I do not always see this connection. I can go weeks struggling , then it might lift for a bit. When I am at my worst..diaphragm breathing, slow deep breaths, and trying to distract myself can help, but sometimes not then it is rather scary. It is often as though I can't breath automatically, it takes effort. Also at times I can take deep breaths but my body acts as though I am breathing water or something. Like it is craving air and the air I'm breathing isn't penetrating.

Wish I could give you some tips. I think several on the site get sick fairly easily. Strangely at the beginning of onset I never got sick. Not even my usual cold sores, colds, etc...a couple of years in I started catching things again. thought it might be a good sign,ha! ha! Grasping at straws. Wish you could find a support group. But if nothing else just share with all of us! Try to watch a funny show to take your mind off things, laughter can't hurt. Just know you are not alone with your struggles. Stay strong!

I too had a lump develop right under my jaw and also had a bit of swelling. Thought sure it was tooth related because I have problems in that area. however x=rays showed no abscess etc... took 2 rounds of antibiotics and it finally went away. Is yours tender to the touch?? Isn't it odd how three of us have had this???

Will do and good luck!

Your topic has caught my eye because I too have had increased body pain after a relatively good summer. A few other set backs as well including stomach issues. I wondered if the weather is triggering some sort of flare?? I am going to see my GP tomorrow. Will let you know if I figure anything out.

I have had the feeling that the floor is moving. Comes and goes.

My moons disappeared also except a bit on the right thumb. Vertical ridges, especially on thumbs and pinkies.

Hello Neighbor, I live in McLouth KS about 40 miles from KC. I am much older than you but have had some autonomic testing in KC. Dr. Dendi is the electrophysiologist that I saw at KU Med. I have since been to the Mayo Clinic. Dr. Dendi does see patients with POTS although is mostly familiar with the heart aspects. I have also seen a neuro at KU Med. PM me if you have any specific questions you would like to ask! Good Luck!

I had dreams exactly like that even before becoming ill. I think they are more common when you fall back asleep for a short period of time. They are awfully disorienting, thinking you are finally awake but find out you are still dreaming etc...

Thank you for sharing! So very encouraging. Was the improvement gradual? At what point did you start to notice improvement? What improved first? Was it a steady gain or did you have set backs? Sorry for all the questions but you have given me hope .

Each morning is a sort of surprise. Some days sluggish, sometimes dizzy, sometimes not too bad, I never know!

I have a weird similar thing. When I get a trickle of water down my throat and cough hard,( like when you get a tickle and cough and cough, ) my throat closes for a few seconds, seems like forever. I try to relax and breathing slowly becomes possible. Sounds horrible as I try to squeeze in a bit of air. I also have had swallowing difficulty that comes and goes.

Hello, Happy something is helping you! I wanted to add that I have quite a bit of bulging vessels when standing, some pooling , low blood pressure etc... However, I have the opposite of too much mucus. From the start my nose and mouth have been very dry. No more colds or runny noses. I try to stay hydrated to help with mouth dryness. I do remember periods of very watery eyes though. It is so strange how each of us is hit in different ways. Hang in there!

Glad someone asked the breathing in question. I have noticed this too. Good to know it's not abnormal.

YolalnBlue, Your story sounds so similar to mind although I was older when things started. I am now 55. Like you many tests, hospitals theories etc. and like you I have pulled back a bit from trying to figure it all out. I too am gluten free, pace myself, hydrate etc.. Interestingly my right side is far worse too. I also have severe migraines and head pain which begins on the right side. I had bell palsy once on the right side so thought maybe damage from that. I saw you listed possible migraine phenomena. What exactly is that? It was so nice of you to share your story and information. All the best to you!!

To add in another. I have had very severe episodes after driving. i will feel ok (for me )....get out of the car and have leg weakness, tremors etc... I drink fliuds when I drive and never drive for longer than around 20 minutes. Can't figure that one out.

Hello, I am 55 years old also and developed dysautonomia at age 50. Over time some things have improved and some things a bit worse. Will write more later but wanted to say welcome. You will learn a great deal on this forum!