angelloz

yea!!!! I am a long time migraineur and know what a relief you must be feeling. A word of caution to other dysautonomia folks. I tried botox too...I had a bad reaction including inability to swallow food and severe neck pain. Ended up in the ER and they told me not to get it again. After about 4 weeks the problems lessoned. I think it is worth a try and had heard great things about it....some may want to start with a lower dose. Enjoy those migraine free days

Angelloz

Rats...why indeed when things are hard enough. Don't hesitate to get both of you to the ER. Don't try to keep going. Take care of yourself too. We all aresending positive energy and prayer your way.

Angelloz

Wow amazing you should bring this up...when I first became ill in 2010 I had the snap ,crackle, pop...whenI would try to turn over in bed my neck was popping like crazy..I also had crackling noises in my head, still have that. The neck poppingis better but I am not. What is the link here????? I wish I could figure something out.

Angelloz

A couple of drinks of what???? The spikes are getting higher for me and like some of you mentioned , they make me feel like this is the end. I usually slow deep breathe...try to wait it all out....wish I knew what was making it worse. I am also having more breathing and digestion problems. I seem ultra sensitive...and mild activity sets it off and I have more of that constant nervous feel. Used to take tiny amounts of ativan but have tried to stop...maybe I should go back to it or try zanax. Good luck to all.

Angelloz

I am trying to think about what to say. I think mine began with a tetnus shot. About 2 years of not terrible symptoms...then now like you am at about 5% of normal function. Iv fluid helps me as well and like you it is short lived. Today for example every time I try to stand my blood vessels bulge and I have to sit down. I pray each day for acceptance and strength. I will write more later.

Angelloz

Doozlygirl,

I have so many head pressure/ pain problems, I wondered how they found the CSF leak, what made them suspect it and did the treatment work?

So many mysteries....so much to figure out

Angelloz

WOW, You have described things I just thought were odd sensations that I imagine. I have also smelled smoke, blood and tasted blood. I have cleared mucus out of my throat certain there would be blood and there was not. Unbelievable to me how we experience things that we don't even address because we know doctors will think we are ......fill in the blank.....crazy, imagining it, making it up ....

Angelloz

Thank you all so very much for taking the time to reply. I appreciate it more than you know. Past two days have been bed bound and feeling pretty low....your sharing and kind words give me a boost.

Angelloz

I haver wondered about this....but I have had both...don't know what this means.

Angelloz

Early on I could handle car rides, even a 13 hour one to the Cleveland Clinic. Now I cannot handle a short car ride. Don't know what is going on...motion ,position, reacting to something????? I know you must eel so sad thinking you were doing something to help yourself and now feeling worse. Could it be a reaction to the stress of change??? Let us know how your doing.

Angelloz

I think an issue for me is increasing salt causes SEVERE migraines and I can't stop vomiting...so not much ground gained. I do drink alll day long. The saline IV will even give me a migraine...I need to find a balance that will work for me. Thank you all for the encouragement.

Hello,

I am 53 years old and was diagnosed with autonomic problems and low blood volume at the Cleveland Clinic about 3 years ago. I have episodes where I am light headed, vision goes fuzzy ..lay down slowly feel better...those feelings I get.

Then I have spells where I am weak, shaking, heart is pounding hard but blood pressure may or may not be that abnormal,I feel like I am dying though it is hard to put into words. I of course fall to the ground unable to stand but laying down does not decrease my symptoms. Sometimes I wait it out at home feeling like what will happen will happen and may recover a bit after an hour. Sometimes I have gone to the ER. usually very orthostatic and am given fluids. I try to keep breathing slowly because it is hard to breath due to weakness. I stare at something and try to stay conscious. I may have nausea, excessive urination, oh so weak. Does anyone have episodes of this severity?

I have elevated tryptase and am looking into mast cell issues. Also, multiple thyroid nodules and elevated thyroid antibodies. I have other symptom questions but will start with this one for now... Thanks to all who share their thoughts and ideas. Maybe all these heads together are better than one doctor:) Angelloz

Chrisy,

I live in Kansas and would love to know the name of a good doctor in Missouri. If you don't mind sharing that would be great.

Angelloz

This is exactly what I hate!!!!!! You explain important information and they half listen. I do not allow more than 3 vails at a time now...and if I have blood tests I spread them out. The pots part was funny and sad too.....geeze....it is so exciting when you happen to get a competent person..but doesn't happen often.

Angelloz

Jangle, I found this interesting as I have had to stop teaching because of this issue..when I would stand up to give directions etc..I would get so short pf breath I could barely speak. I have taught for 29 years so it had nothing to do with public speaking anxiety etc... The breathing issues used to come and go but now is more constant as are other symptoms. Inhaler didn't seem to help a bit. Talking on the telephone does this to me as well...I do have an elevated tryptase so am lookingi nto mast cell issues. Also found out huge thyroid changes..many nodules..one side quitting....some mant puzzle pieces and too ill most of the time to pursue anything. I am always anxious to read your posts as I know you are trying so hard to think things through.

Angelloz

Do you stand flat up against the wall , or are your feet abit away from the baseboard?? I would like to do this too.

angelloz

Same for me , I can listen..but if I start to turn it up , move to the music, really enjoy it I start to feel ill. This sort of thing drives me crazy.

I can watch TV but if it's a game where I care about the outcome, I start to get sick and urinate like crazy...why oh why??? It's hard to let out the emotions of dealing with this illness, when emotions make things worse..

Angelloz

I definately have periods when it is hard to breath. It comes and goes...when it is really bad I feel like My muscles are weak and I have to work to keep breathing. I also have a weird throat thing but I have spastic dysphonia so I think it is realted to that. Let me know if you have an questions.

Angelloz

Hello all, Very interesting thoughts. In response, I was always very ill after flu vacs. and stopped getting them. The last vac. I received was a tetnus booster and dysautonomia soon followed... I have always felt this is what started the ball rolling. Angelloz

Jacquie,

Hello, I do not post often as I am 53 years old, became ill 3 years ago, don't know if I fit in with you young gals:). I was diagnosed at the Cleveland Clinic with low blood volume , some type of dysautonomia. Severe migraines...many symptoms etc... Your post caught my eye because when I first became ill I had nausea, gerd, breathing problems that progressed to other problems. For 2 years managed and then two months ago the horrible nausea returned along with constipation, now I can't stand for more than a few moments or pre-syncope...once I did pass out, I feel horrible as well. Thought it was odd that we both relapsed with nausea. There must be a clue there but what???? I have increased fluids but to no avail. Peeing a lot more again. I really feel for you as I know how we struggle then to fall back , it is so hard to try again, but we must!!! Let me know if you have any other questions that I can help with. I react badly to medicines so do not take much except potassium, mine is always low and I am trying cymbalta, other things increase my migraines.

Take care, Angelloz

I had the botox and couldn't swallow food...SEVERE neck pain, awful..the ER told me not to get it again. I do think my neuro. gave me too high of a dose. I do take triptans when unbearable but they make me feel terrible...rock and a hard place. I too have haedache and pain daily. I took Kepra which I think help but made my muscles feel week. I seem to react to EVERYTHING.

angelloz

Thank you for those kind words...chronic illness is unexplainable until you have it. I now feel badly when I think about people throughout my life that struggled with illness and I didn't realize just how hard that was.