angelloz

Hello, Wanted to say welcome to the forum! I am 55 also, illness started in 2010. I have been to the mayo and had lots of tests. A mast cell specialist at MUSC diagnosed me with MCAD but the treatments didn't seem to help. Your GP can order tests for mast cell like tryptase etc...I do not know the underlying cause for my autonomic problems but have small fiber neuropathy, hypovolemia and OI. I guess all I can say is chip away at possible causes but it can be difficult. Finding a doctor willing to help you sort it all out is important. You can PM me if you have any specific questions I could help with.

Love it!!

May I ask what type of chronic pain? I suffer from this so much and have found nothing helpful. My blood pressure is very low anyway so might not be good for me.

I hear you! I am EXTREMELY sensitive to medications. And it does cause problems for me with treatment. Like you I want to try but I have been diagnosed with MCAD and think this is part of the problem. I also have weight loss problems so feel like I react less to low doses but can't get support on this. I also have migraine problems and you are right...how does the vomiting from migraines outweigh help from say florinef. Wish I had help and answers for you but wanted you to know I understand! I no longer take florinef or midodrine. I feel no worse most days and have fewer migraines..( although still constant head pain )....so....???? Who knows.

That is exactly the feeling Raisin...I'm taking in air but it doesn't feel beneficial!! xRobin, I too have had this happen in the car several times. This makes me think a mast cell issue because even movement etc...can cause mast cell problems. Riding in a car can make me feel scary terrible in general sometimes but not all the time.

I too lost weight at the beginning of my illness and again when I am on a down slide. Like others have said I was dangerously thin. I have gained back some but not nearly what I lost. I am always trying to gain eating every three hours throughout the day. ( potatoes, beef, butter, etc...). Didn't notice a weight change with Midodrine but had to stop as it increased my migraines!

My sensitivity to smells, and visual stimulus seems to sort of wax and wane. When I am generally worse small things cause problems. On good days I can handle more in the way of scents etc...

No moons here either, and yes I used to have them.

Here it is again...not sure which way the link will work best. http://mastcelldisorders.wallack.us/yabb/YaBB.pl

This is a great one. I am on this forum as well. http://mastcelldisorders.wallack.us

Question for kitt I have a question about your post on insomnia. When I first developed autonomic issues I was unable to sleep at all. It was one of my earliest issues as I had always been a person that needed a solid 8 hours every night. I felt constantly alert. If I started to drift of I would jolt awake. Sleep aids ( medication ) made me feel worse and I really didn't want to go that route. Four years in things are a bit better but still have issues getting to sleep, frequent waking etc.. I was wondering if you could share some of the tips you picked up that worked for you. You said the instructions were long and detailed so probably more than just the, don't nap, hang out in your bedroom, watch TV before bed....the usual. Any advise would be appreciated! Hope you are having a wonderful day! angelloz

It is interesting to me what kJay mentioned about supplements. I too take small doses and rotate or I begin to feel horrible. Any of our supplement experts have thoughts on that??

I have not but was looking at them. My hands are worse than my calves and legs for pooling and vein dilation. Let us know how you do with them?? Hope it helps you!

I have wondered the same thing. Any type of sudden change can bring on symptoms...the scariest of which is feeling like my heart is forcefully beating..struggling. Even sudden emotional changes cause problems for me. I do have problems lifting even from a fixed spot . Walking can be fine but if I add in a quick jog to say the mailbox..mistake. I think I really need try try bicycling. My blood vessels in my hands can really pop but they do that all the time since my illness. I think mine is a blood volume issue since I showed up as being hypovolemic. So far haven't found what helps but I wish I had some advice.

May I ask what other supplements were recommended?

I have not tried paleo but have been gluten free for over two years..still have the horrid migraines. I sent you a PM. It could work for you!!!

Mine is always pale...I suspect this stems from having my gallbladder removed at the beginning of my autonomic problems before diagnosis. I think now the early signs had nothing to do with my gallbladder....

I have tingling in several areas. While at the Mayo Clinic had an Emg done. It wasn't too bad compared to some other tests. Somewhat painful in areas that I have problems. It showed normal muscle function. I do have SFN and it does not test for that. Maybe for peace of mind? I do understand being tired of tests. I also wanted to comment that like you I constantly struggle to n maintain weight. I have eaten so much butter I thought my cholesterol numbers would be horrible but they are just fine.

Thanks IceLizard! I will talk this over with my neurologist! I am allergic to sulfa however haven't tried it since childhood. I wonder if diamox and seroids are the only options?? I have wondered about a Spinal Fluid Leak but the MRI at the Mayo showed no brain sagging??? Boy , relief from just one symptom would really lift my spirits!!

This really caught my eye as I was given a round of steroids in the ER when my migraine was not responding to anything else. I felt better than I had in years....my daily head pressure was nearly gone too..like many others said, it is not an option for any length of time....sigh....but I feel this must be a clue to something!! I have tried things for mast cell but it seems like medications are triggers for me. Sometimes I too flush and my face gets really red whenever I wash it..

I absolutely suffer from unwanted weight loss. It was one of my first symptoms and I had a loss of appetite. When I have a flare I start to drop. What helps me is eating frequently and trying to add in a few fats..butter, hamburger etc... I have gained back 10 pounds but this has taken forever compared to the time it took to lose weight. I am still 18 pounds lighter than my pre- dysautonomia weight. I feel better when I can keep on some of my weight. Had many tests but no real answers.

Oh..I have taken my temperature when I overheat but it is not elevated.

I get this when I lay down at night , but it lasts a fairly short period of time then I feel cool again. If I wake up in the night within minutes I overheat ...kick off blankets then will gradually feel cooler again. Mine seems to be triggered by positional changes at night...sometimes even going from asleep to awake..it is odd...at the Mayo I had the sweat test with the talc...I showed some patches of hypohydrosis...mostly legs and hands and a patch on my forehead which the doctor said is seem with people who have migraines...strange huh! No big tips except fluids and salt...my sodium was low. I eat a lot of salted butter because I am trying to gain weight..guess my body doesn't hang on to the sodium. Usually this is a hot spell without sweating but as I said on another post sometimes I wake up very sweaty....

For me this happens once in a while. It may occur almost every night for a week or two then seems to go away. I haven't found a solution, just seems to resolve.

I have pressure head pain every day. It began only when standing....it is still worse when standing..sometimes it is a pressure with mild pain, other times it is quite painful. Haven'tfound a solution yet, I also have migraines. I think others have mentioned the head pressure. Hope you figure something out that works for you!