angelloz

I am interested in topic as well...of course when I am in the hosp...ER...or doctors office don't have the huge shifts. It seems like my body can not adjust to any change. If I'm having a pretty good BP day standing..that evening when I sit and relax it might plummet..last night 70/52...today..it has been low all day. I can't stand up for any length of time. I push fluids which helps for a very short amount of time...talking and eating crash it as well. Sometimes when it has been high I can deep breathe and bring it down...sometimes...forceful heartbeats take over then it is awful. But ...the low...geeze...I wish I could get a doctor to help with this. Angelloz

I can really weigh in on this as I have had spastic dysphonia since age 32. I am now 54. I took botox injections for this up until 2010 when the autonomic problems hit. Maybe this was a long time clue that i was suseptible to this problem. I never had the breathing problems in all those years that I have now. Sometimes it is a sort of tight feeling in my throat, at times I can't take as deep of a breath as usual...and the worst of all, breathing..but feeling like I'm not benefitting. I feel like I'm desperately needing oxygen. This happens when my symptoms are severe...ER time??? maybe I had mild autonomic problems for years..I have had migraines...low BP etc.. but never felt the awful way I feel now. Angelloz

hello, i am currently trying to get off of Ativan....yes horrible...may I ask what does you were taking?? Angelloz

Great question! Like Ramaketesh doctors thought I had an overactive thyroid at first..oh how I wish. I am 5' 2" and lost 25 lbs rapidly...in 2011 gained a bit back and felt better too.....fast forward to this year..lost another 7..weigh 97 and look like a skeleton...I try to eat PLENTY but can't gain. I also have a mast cell diagnosis...so maybe ny body can't absorb the calories?? I can't eat sweets or dairy so that makes gaining weight harder. Not eating dairy lessons the migraine frequency. Sugar makes me jittery...really jittery... I use lots of olive oil.... Are there drugs that help with weight gain without causing some horrible side effect? Florinef increases my migraines and I end up vomiting...so no bebefit to that . Angelloz

Hello, It is great that you have found someone that will be able to really. REALLY help you. You mentioned realeasing large amounts of histamine when you exercise or ride. Did you mean ride as in a car ride?? I am asking because I seem to get very symptomatic when I try to go somewhere and it seems like the motion of riding in a car is part of my problem..or something with my vision and looking out of a moving vehicle..not certain. In any case , just wondered if this is what you meant? Angelloz

Hello, It is great that you have found someone that will be able to really. REALLY help you. You mentioned realeaseing large amounts of histamine when you exercise or ride. Did you mean ride as in a car ride?? I am asking because I seem to get very symptomatic when I try to go somewhere and it seems like the motion of riding in a car is part of my problem..or something with my vision and looking out of a moving vehicle..not certain. In any case , just wondered if this is what you meant? Angelloz

I get these tremors too when I am very symptmatic. Legs in particular...but once during a severe attack hands and arms too. In the ER they ask if I'm nervous....I basically don't say much I know what they're thinking. I haven't checked my pupils at this time. I get very cold and hot alternating. I usually never sweat... but once in awhile I'll wake up very sweaty...why???? Who knows. As far as body temperature regulation one odd positional thing is this; every night when I get into bed I am cold, within 2 minutes of laying down I become blazing hot and kick off all covers until it settles down. It seems like my body has problems adjusting to any change. IV saline can give me tremors too but I thought it was the fact that it makes me feel cold...however that doesn't explain tremors fromthe waist down only. So many puzzles....wish there would be some solid treatment to help all of us. Angelloz

Weakness is not unusual with many of us...so don't jump ahead to something worse. In the beginning of my illness I was constantly afraid and this makes symptoms worse...but I know how scary it all feels. Take a deep breath and slow down your thinking. Do something to take your mind off of your thoughts. A funny show works well for me! Angelloz

I have been dealing with the same headache issue. Wake up to head pain..that can ease up or go into a migraine.....past few days it's been the migraine. I feel all over horrible too. Trying to stay hydrated and hope it goes away...... lately my migraine meds make me feel even more hyper and anxious...it's horrible. If I find something that helps I'll let you know. Angelloz

I have the same build up issue. I am trying some things for MCAD. Sometimes the first dose works well..then by day three it begins to make me feel agitated or moody.....I am wondering if I should try a every other day approach. I have tried sticking with it to see if I can build up a tolerance...but gets ptogressivly worse.... why can't anything be easy! Angelloz

Hello, You are NOT alone. Mine sort of goes in spells but I absolutely get facial, head and teeth pressure. Like you I am really dizzy today. Try to relax a bit and know that others have these sensations as well. Angelloz

Exactly!!! Well said ladies! I soooo wish a doctor could step inside my body and live it all for just one day. Bet that would end all the...I believe there is an anxiety component to your problem blah, blah, blah. I did see Dr. Afrin in October and tested positive for MCAD. Tryptase of 18..elevated prostoglandins and a couple of other things. Trying some meds but not tolerating them too well. Think I'm feeling a tiny bit better then wham...that horrible... I'm not going to make it feeling...do I call 911...or????? Lay down and pray. Well let's all stay hopeful, keep sharing information, and maybe we can improve. Hugs to all. Angelloz

I do this too. It must be instinct but since we are still not getting our head below our heart not sure what it does?? Angelloz

Thanks to all...I needed a boost..felt like my ability to cope had hit rock bottom. I have been thinking about the butterbur and feverfew too.... I keep a food diary...I know onions, dates, and weather changes give me migraines...but what else?? Haven't found other connections and still get them. I eat a very limited diet. I will try some Vit. D , I know I had low levels awhile back. Mine usually last 4 days...then not much of a break inbetween. In the month of Nov. I only had 2 ...what was different??? I don't know. I didn't feel too well in Nov....and like I said..usually when autonomic symptoms are bad..less headaches...what a puzzzle. JpJd59..., I hope things continue to improve for your daughter. I didn't become ill until age 50...so I feel so badly for someone so young to suffer with this..when it should be a great time in her life. Ok so I will try not to give up!

Hello, Don't quite know how to begin ...but I will just plunge ahead. My life is basically one of two things.....miserable dealing with the autonomic problems that so many of us deal with, or Migraines that have become unbearable. Strangely, when my migraines are at their worst..my other symptoms are less pronounced. Perhaps because the pain raises my blood pressure. I react horribly to medications, I have been given meds in the ER that made me feel like this was it for me. I can only tolorate tylenol...I do take tryptans ( Amerge, Imiterx...) for my migraines and these make me feel terrible and are becoming less effective. I do not take more than two days of pain relief mediicine per week.I have had a severe migraine since Tuesday..have completed my protocal of meds. Between the two I have no life. My husband is a gem but no kind of life for him either..we can't go out etc... I spend nights crying from the pain. Many neurologists ...etc.... I want to be out of pain. Angelloz

Well, I get this too, For me it feels like my body is draining away ...yet still fighting to stay alive. I have to make myself breathe in and out yet it seems like I'm not getting enough oxygen. Sometimes I must force air out. It will not go out normally. If I try to talk I go downhill fast. I usually just try to stay conscience and alive. It is a HORRIBLE feeling. I think the fear that comes with how bad I feel of course makes it worse. I want to ask my cardiologist about this at my next appointment. Sometimes I'm surprised I am still here. Angelloz

I tried to get into Mayo in Minn. twice but was turned down...if they could walk a day in my shoes. I'd say if you can get in go for it! Leave no stone unturned. I too am curious about your treatment for Mito. and how it helps you. Angelloz

I get this exact same thing. You describe it well. It used to come and go , but recently I have delt with it at varying levels of severity daily for a couple of MONTHS. Bothers me less when I am outside..not trying to focus on anything too close. Don't have any answers or helpful treatments to share ( sadly). Just know you're not the only one. Angelloz

I went to the Cleveland Clinic abouy two years ago and saw Dr Jaegar...I did get some good informayion but wished I had been able to stay longer for more follow up. I was found to have hypovolemia, but wished I had had the test Kelly mentioned. One problem nay be that I went before I was as bad as I am now..maybe too soon? Kelly could you share some of his theories on autonomic dysfunction?? Angelloz

Finally someone else. I am 54 years old and now I always ask for 2 jugs with a 24 hour urine test because of the high volume output. I have had doctors say I am drinking too much water, however doctors say to hydrate,hydrate ...you know the drill. I think even with added salt I can't absorb it...one of my earliest symptoms was urinating large amounts at a time..when before I would not do that. Strangly I was also incontinent for about a month..then that totally resolved. I wish doctors could reach some sort of consenses on some of these things. Angelloz

So you don't feel alone...I have pain daily also. Back pain I can stand. The worst pain is my skull gets so painful that laying on a pillow hurts. I have been told I have MCAD so I am trying things for that too. No luck yet. I have been to the Cleveland Clinic , that is where I found out I was hypovolemic,,,but was just prescribed the usual. Florinef and midrodrin. ( spelling ) Don't ever give up...between all of us maybe we will figure something out. I will post anything that helps me. Angelloz

So nice to hear a few others have the hot flash/ heat thing....usually no sweating for me, just blazing heat when turning over, waking up, and a few seconds after I first lay down. It's like my body can't handle the smallest changes.

Way to go!!!! We need more doctors who have sat on the other side of the fence. YOU ARE AN INSPIRATION!

Same for me and it has been horrible lately. I too can handle the great outdoors much better. It is getting colder here in Kansas so will be stuck more indoors. I am sad also because I cannot shop for Christmas..lucky that I can online shop but it is just not the same. I try to breathe through my mouth in stores to avoid scents...we can't do much about lighting. I am trying to figure out if some stores are worse than others. I wish I had more tips for you. Angelloz

Since my last flare I have not been able to drive...if I do I get severe forceful heartbeats, weakness, breathing problems...everything goes wacky. Corina..may I ask what symptoms the Octreitide helps with? Angelloz