angelloz

Great! Wonderful to hear!!! Enjoy life!

I have this too and have wondered about the total connection. TrPs have been linked to dizziness, vision problems, headaches, many of my autonomic symptoms.

I have multiple nodules and extrememly high antibodies yet several endos say this is not a problems because all levels are fine TSH , Free T etc... Always wondered about this ..also had a fine needle aspiration on the largest nodule which was benign...one endo said they would all need to be tested to rule out cancer, others don't agree...sigh...

I wish...I know it sounds bad but I cannot gain no matter how much I eat. I have lost a large amount of weight since this all began. I have heard it both ways though...weight gain and weight loss...... :(...wish we could all find a happy medium!

I have been diagnosed with MCAD and have tried several H1 H2 combinations but no luck so far. I can take Claritin in small doses but anything higher than a quarter tablet at a time makes me jittery as well. Even Benedryl can have this affect when it would make me so sleepy before the onset of this illness. You are not alone with this reaction.

Oh my word...where to begin!! This began for me when my symptoms began! I had migraines for many years but the crackling in my head area...more skull for me began with the head pressure. I have tried to describe it to many neurologists but get brushed off. One doctor said it was vertabrates in the neck making it feel like it was in my head . My crackling is worse at times and never completely resolves. When I move my head around it sounds like gritty sand or rice krispees. Well I know that wasn't helpful as I have no solutions..but was amazed to see someone else bring it up!!

I have had what you are describing...the FORCEFUL heartbeats. That is the worst.One doctor told me after low BP it is the recovery phase...nope don't think so. Yes I feel terrified but try to keep breathing slowly to not add more problems to the mix. Have gone to the ER..but....given IV fluids at least.

I do understand.

I have had the feeling of the ground swaying beneath me..like I'm on a boat. I go through periods of having my left palm go numb, alson soles of feet and certain toes.

Often tender patches at various spots in my mouth. Sometimes I feel off balance. You are not alone.

My began with menopause....4 years later I'm still not better.

Hang in there! i have the high when standing then drops when I sit down at times. lately it will rise for a short time when standing then begin falling.

I think low BP and changes cause a swimmy head. Hope you are doing a bit better today!

Jangle, I have let my brain wander through the same dilema. When I first came down with symptoms I could not sleep at all, I was up all hours of the night yet never felt tired during the day, hence the thoughts of pheo or hyperthyroid, ( not the case ). However at that time I didn't have many problems with standing..that all came later after I began sleeping more at night. Now, when I first wake up, ( if I don't get a middle of the night migraine ), I feel almost normal for a minute or two ..then it all begins. Standing in the morning is horrible, by evening it is usually much better. If I lie down in the afternoon because I have to...I too go through the dreaded..not too long or I'll struggle being upright again. I have tried drinking water through the night...elevating the bed....no change. Let us know if elevated the bed makes a difference for you.

I would say that time flows for me in a very similar way as that which you describe. It all feels sort of strange almost unreal at times.It's getting hard to remember what a normal pace of time felt like.

I wanted to rep[ly sometimes on the last question. At times they resolve when I lie down sometimes not. I think it depends if I have a migraine starting also.

I have found that chewing gum helps with the plain orthostatic headache pain. Not sure why.

You are not alone. i hate this symptom too...but have many others.

Question..I trie to start a poll a few days ago. When I clicked finished it disapperaed and never showed up on the forum. Can you tell me what I did incorrectly??

Angelloz

Sorry you went through that. Most people get some stiffness..etc..when standing in one position. Probably worse for us. I think you would notice things less episodically if it were something else. I have not stood that long in one place. When standing to long I get weak, nauseous, pounding heart, an overall terrible feeling.Have to sit but doesn't resolve very fast. always try to get back to the car and head home. Happened to me at a store on Sunday. I always want to at least try to go with my husband once in a while..then...depressing. Hope you are feeling better now!

Wow..thanks to all who shared! We all notice things that seem so unimportant during doctor visits. Again, I wish we could all have one afternoon with a panel of doctors listening to some of these issues. Maybe hearing group similarities would make an impression...or get the wheels turning!

I am occasionally nauseous but not often. I think it is the increase in urination that is the problem...fluind pass through without being utilized.

I just read a post about feeling feverish which has led me to wondering about a rather odd symptom/affect of my dys.

Since 2010 when it all started I have not really been sick except for one brief bout of the stomach flu. No colds, fevers, congestion, fever blisters etc... I was a public middle school teacher before I had to leave due to dys, I was sick at least once every year. I have mentioned this to my doctors saying I can't seem to even run a fever and they always say well that is something good...but it is nothing like the way my body acted before. Thoughts???

Angelloz

I have periods of heat throughout my body but not really a feverish feel. I too run low when I take my temperature.

Hello,

I want you to know that I understand completely, including the feeling of doom. I have had these several times. Deep breathing, drinking liquids waiting a bit helps some. I have been to the ER also really thinking I will not last until I get there. I think this usually happens with my episodes of high BP. Normally mine is too low. maybe the high surges are a shock to the body when it is normally low. I have been checked for a pheo also but the tests were negative. Hang in there. try to do things that take your mind off of your illness. I know sooooooo much easier said than done!

Wow ! this caught my eye. I live about 40 miles west of KC. I see various doctors at KU med..but none are autonomic specialists. I am going to the Mayo Clinic in July as I am getting worse rather rapidly and severely. I did have a tilt table and a few autonomic tests at KU about 3 years ago. PM me if I can help with anything more specific.

I tend to have very hyper reflexes and have always wondered what that means. Doctors have asked me if I'm always like that so......I wonder if hypo or hyper reflexes are some sort of clue. Some days I wish everyone on this forum could meet with a panel of experts and together hammer some of these issues out or at least get some great minds thinking!

Before I could get aproved for disability they made me get a functional capacity test. They provided one and paid for it. Shortly after that test I was approved. That was my employee disability.

Mine bulge and are very blue. I don't think it's high BP because it happens even when my BP is very low. If I life up my hands it goes away quickly...of course I can't spend all day with my hands in the air .

Very interesting...so many problems...so much to think about, how many things tie together!

Immunology is the place to start, mention that you would like to be checked for mast cell issues...tryptase, prostoglandins...

there are experts in MCAD like Dr. Castells in Boston, Dr. Afrin in SC.