angelloz

I will write alonger post tomorrow but for now wanted to say hang in there. You have some appointments on board! Ihave extreme weight loss too and it is very scary. Keep eating and drinking as much as possible...potatoes and rice!!

I remove my bra when I am having problems with breathing. Also in Mast Cell issues..pressure can be a trigger.

Does anyone else experience disequalibrium?

Ok, I have been beating this drum with doctors for years...my antibodies are really high however since everything else seems normal they say it is all fine. I also have multiple nodules which are checked for cancer but are fine. Last ultrsound had shown the right side had shrunk..the report said perhaps due to hyperfunctioning nodules...was told no. As I get weeker and worse with each passing month..yet never feel sleepy????? Bebe ..let me know what your doctor thinks.

Amen! Ramakentesh, I wish doctors would view these studies with common sense and logical reasoning! It would help us all if false information could be rapidly weeded out!

I just ran across this when checking on something elae and must say the sensory storm sounds exactly like what I go through...and it is absolutely terrifying. If I have one..I am more prone to have it happen with some frequency. If I can break the cycle I can go for a period of time without this happening.

Believe me , if something helped I would gladly take it. So far no luck. You can always try to cut back on something when you are stable and adjust accordingly. Good Luck!

I saw appeal if you can on principal. I know people take advantage of the system..but it is not the fault of those that truely need it. At my exam she kept taking my blood oxygen with a pulse ox... when it got too low she made me stop and said it wasn't safe to proceed. Still haven't heard back on disability.

I found the same thing..symptoms worse after coloring and even migraines... I don't like the way I look with grey either but feel like I have no options. It is coming in grey at the top..wish it could change over more quickly. Tried henna..it is very drying and a huge mess.

I do not like pressure in my head I hate it when I lie in bed; Wondering if I'm breathing right, Then waking up, heart pounding fright!

Hugs to you sweetie, you have been through so much but I can tell you are a strong person. Keep venting to us! We all need to be able to do that. I am in year 4 since my diagnosis. I lost a lot of weight at first..then stabilized, now losing again. It is scary, like you, I eat plenty. I am seeing another gastro doctor in July. Just know there are others with the weight issue. Treat yourself kindly, talk when you need to, watch something funny and know that we are rooting for you!

Tetnus booster for me, two weeks later.....Thought symptoms might improve over time but that has not been the case.

Oh my goodness, I feel so badly for you but totally understand. But what struck me was ( I am a 54 year old female , problems began at age 51 ) you could have been writing my story! I too began with horrible gerd, progressed to cold hands and feet, troulble breathing heartrate problems, (BP also for me ). strange reactions to medications...and other things. Here is the part that totally hit me as no one else has described this the way you did. I also began having head pressure when standing...it would be resolved when I would lie down. For me this went on for 2 and1/2 years. Now I have severe pain when I lie down...still the pressure when standing. I am beginning to think there is a spinal fluid regulation problem. I am going to discuss it with my Neuro at my next appointment. I have to go for now but will go into more details about tests I have had etc.. You are in the right place. Many kind and thoughtful people on this forum. Angelloz

Yes, please post your progression! Good luck, I hope it works for you. WE can't really improve unless we try some things.

Ironically I have an appointment next week with a doctor for my disability claim. My husband has to take off work because I no longer am able to drive. I was told that it would take 4 hours. I can't imagine how I can be upright and function at all for 4 hours. Have decided I will do the best I can and quit if I have to, no matter what. I will take water and some snacks as I don't go that long without eating somethong. Try not to worry...just do what you can. Let us know how it goes. Good Luck! I will be thinking about you!

Let us know how it goes. My husband has an inversion table for his back but with my messed up body I am afraid to try it. I have had my spine actually sore to the touch many times and have wondered about a spinal connection.

Welcome... I absolutely have the bulging veins..just as you describe. My hands do turn red also when I get spells of blazing heat...but the veins bulge regardless. I have some swallowing issues, however I have had spastic dysphonia for many years, long before my autonomic problems. Let us know what you learn from your swallow study. Good luck!

Most of my severe episodes occur in the evening and I have wondered about this as well. I do have an elevated tryptase and MCAD diagnosis, but H1's don't help so far and some make me feel worse ..so??? Keep trying to figure out if there is a pattern. Good Luck

Me too!!! I can raise my hands above my head and it quickly retreats. It looks terrible. It happens even lying down if I get hot....which I do when waking up in the night or rolling over in bed can cause extremem heat. Mine does not seem to be painful yet..just unsightly and a bit scary. One doctor said it is because I have lost so much weight...fat in my hands to hold in the blood vessels. He said to do hand/arm exercises. Since I am right handed and do everything...lifting , holding etc... with that hand and that hand is the worst, I know this is not accurate. Sigh.

I remember reading about this on a fibromyalgia website. It was referred to as " sleep starts ." I get this at times too. Seems to happen when I am really jittery, when I start to fall asleep I jerk awake.

Count me in on this too. I was allergic to sulfa drugs when I was a child but nothing else. I took many medications for migraines, then when I became ill I became intolerant to about every medication I was given. Mine is a bit different as I feel horrible within 20 minutes of taking many medications. Forceful heartbeats, hard breathing...sometimes back pain and quite often pre-syncope. I hate it and like you wonder how to improve. I also have a MCAS diagnosis so am taking Claritin, only 1/2 tablet at a time. I'm OK with that I think. I think many have this issue. Do we metabolize things to quickly...or does it build up over time?? I have tried a couple of things where the first dose webt well but not the second. Or do we need to build up a tolerance? It is difficult to explain to doctors...or in the ER . I noticed when I was able to put back on a bit of weight I did better with medication. Sad to say I have lost weight again inspite of trying to gain. Keep us posted! Angelloz

Strangely...the pain and pressure is almost gone when standing. Angelloz

Didn't think I could have anything new happen but here it is. A quick review....I have had migraines for many years. After the onset of my autonomic problems I developed a constant daily head pain/pressure that is less painful than my migraines but bearable, probably because my migraines are so severe . This pressure feeling was relieved when I would lay down at night. Now ...for the past couple of weeks..I have buzzing in my ears and horrible tender head pain and pressure that is pronounced when I lay down , making it impossible to sleep. Feels like I am filling up with fluid. Issie, could this be from taking too much ginger??? I am taking it daily for help with the migraines. If anyone has had this it would help to know I'm not alone. Angelloz

Question for all...what could this be??? I have bulging veins in my hands when standing ir when hot. Lately I have episodes when I fell very hot my hands turn Very, Very red...not when they are cold..like Reynauds, but when I get really hot. This can happen anytime. One day I was just standing in a store when it happened. I have been diagnosed with MCAD but face isn't flushed... ant thoughts would be great. Angelloz

Hello,, the highest has been 165/100.. this came with tremors, weakness, yes anxiety...which leads to the ER saying...do you take anything for anxiety???? i want to say................. Sometimes it even raises when I stand..mostly drops.... I don't take anything for the low BP due to the highs and also everything contributes to my severe migraines. I feel like I am really going downhill overall...breathing issues..and more weight loss....my tachy doesn't happen as much at all which reminds me of what someone mentioned. At first the tachycardia seemed to help compensate for things ...I was still driving, teaching etc.... now I'm not. Somedays breathing was bad, somedays tachy, others vision issues or head pain, neck pain, occasional nauseau...now all those things are hitting at the same time. My veins in my hands rally bulge out and hands turn bright red at times...blood pooling??? Much more so than in feet. Anything help with your BP swings??? Hope things improve for you as I know it is troubling.