Help4Me

I am totally bedridden ...can't walk....so if they tried to remove me what would they do send an ambulance...and then drop me off on the street somewhere....he did this to me before when I was in the hospital..and social worker came to talk to me and said there was no place of sick people only shelters....and I would have to be out on the street all day..and in shelter at night...I told them I can not walk without passing out.....so what would I do...just lay in the street.....they basically don't care.....they blame me because I have no friends or family to help me....they find that unbelievable...but it is TRUE.....I have been very sick for 4 years and I live in a STATE where I never met anyone due to being sick since I moved here....this is where my son is ...he was my only friend and family......

I have metropolol too and have the same issue with it.....I take it when my BP and heart rate go very high sitting.....that for me is called "an attack" I don't know what causes them but they are horrible..my BP goes up to 225/120 and my pulse will go up to 130 or more.....65 resting....so ya it freaks me out and I take the metropolol...but I don't think it helps too much..maybe because I am afraid to take a larger dose of it.....but I only take it when I have "attacks" which I hope will not be that often....they have been about once a week lately ..but that is only because I am mostly bedridden...ugg this is horrible

I live with my son who has been my caregiver although he has not done anything except let me live in his house and food.....so no real compassion....or caregiving...but housing and food and I am grateful for that....but now he hates me and wants me out of his life forever....and I have no money....SSI has not come through yet....I don't own anything at all...I have NOTHING...and I love my son but he is being horrible to me...screaming at me and telling me to go to h*** and that he hates me etc etc.....it is horrible how he has treated me the past 5 months since I got so sick with dysautonomia....I am bedridden and I know absolutely no one in this whole STATE....I am all alone here....have lost contact with all old friends who are thousands of miles away anyway.....and I can't travel....what will become of me.....can he legally kick me out.....he says he has every legal right to kick me out and that he never agreed to be my caregiver..etc etc in writing....I am shaking and very sick right now with my HYPER POTS symptoms.....my head is killing me and my heart is going bonkers.....what should I do....

jvherenow.....can you tell me what has been working for you....I have horrible shakes and tremors...mine are mostly on the inside....I would like to know what supplements you take and perscriptions etc thanks so much

I had TTT and yes I am DX with DYSAUTONOMIA of unknown ....Neuro thinks it is autoimmune....could also fit MSA or PAF ......my BP drops low and Heart rate goes up 50+ points...

I have those same symptoms and I too had an epidural for a surgery back in 93.....wondering if it could have damaged something....i have had MS symptoms ever since that come and go...now dealing with SHAKING and POTS

I have OH also....do you also get the HIGH heart rate when you stand up vs laying down...thanks

Hello one of my main and worst symptoms of Dysautonomia is severe shaking and tremors...and I am wondering if anyone else has this too.....I am thinking it is food related or when my vagus nerve gets bothered by food in my stomach ??? I don't know but it is horrible......I get these internal shakes that are like tremors....and my outside shakes too especially when I am having a bad Pots day....Please anyone if you have this symptom tell me ...also tell me if you know of a way to stop it...thanks

Warped.......I have the same thing going on with me only mine is every day........I think it has something to do with 2 things....one the VAGUS nerve gets irritated ? when we eat too much...I was just considering going on Liquid diet only for this reason.....also HISTAMINE is linked with POTS ..there is a huge connection between people who have Mast Cell Activation Disorder and POTS.....so please look into HISTAMINE...especially if you can link your worst symptoms to eating....then try to figure out which foods make it worse...and eliminate those foods and see if it helps....also many of us with MCAD have to take an H2 blocker....I wish this thing could be cured without any meds but it looks like that is hard to do.......exercise increases the histamine so that is why you get symptoms when trying to exercise....I too have the same issue....I get on the treadmill at a VERY slow pace and can only do 10 minutes .....it is so discouraging since I used to do 20-30 minutes at a pretty fast clip.....I have learned with this illness you have to take one day at a time...one hour at a time..etc.....

HI Derek I had 15 ER visits and 5 of them were by ambulance....this all just started for me 5 months ago...I remember the exact date and time..it was so traumatic......it has been a very very long 5 months for me...and I still don't know if it is POTS or PURE autonomic dysfunction and they also mentioned Auto immune.....so I don't know..I just know that every day I am fighting for my life.....it is the scariest thing I have ever been through and I have been through a tremendous lot in this life......hang in there and email me....

there is also a connection with Mast Cell Activation and POTS ...you might try an antihistamine the next time you have one of those bad days.....

the water makes me VERY nauseous....I am nauseous anyway......but the water ya just sloshes around and makes me feel really awful....try to drink Juices or Gatorade..it is a little easier to take......I have a treadmill and am exercising as much as I can....I used to pass out after 5 minutes ...but now I am up to 20 minutes of very slow walking......I have heard exercise bikes work good too if you can't stand up at all....

Has anyone gone to the chiropractor to seek help with this.....I did yesterday and NOW I am in horrendous pain in my spine.....my entire back is killing me.....I am just wondering if anyone else has ever tried this and how was the result.......before this Dysautonomia struck me I could get some help from chiropractor...I have never had it hurt like this before....I am screaming in pain now.....can't take NSAIDS due to bleeding issues.....ugggg did I make a mistake going to the chiropractor ??? thanks

At home I do my own testing and my heart rate ALWAYS without FAIL goes up 50 points when standing for only 5 minutes...I have NO idea why it wouldn't go up at the TTT ...I think it is because I was strapped in and was not totally standing on my own.....at home I am not being held up by any straps etc....that is my thinking anyway...I went to a chiropractor yesterday to see if it might help....OMG ...it made things so much worse....my whole side of my left leg was numb last night....and the shakes were worse....I am sure they will say orthostatic hypotension for sure...since when my BP dropped at 19 minute mark I began to pass out.. so we will see what they say....maybe they will say all is fine....at which point I will be very frustrated...because ALL IS NOT FINE......

sounds like nerve pain....can you see a chiropractor ??? sometimes they can help

I have ALL of the symptoms you have and I have extremely itchy skin right after eating anything.....I am on a LOW HISTAMINE DIET....but still the suffering continues......I also have all the POTS symptoms.....I have LOW thyroid....so if you haven't had your thyroid checked you probably should....even if it is off just a little you need treatment for it.....this is how I have come to understand this disease works....HIGH HISTAMINE LEADS TO ADRENAL FATIGUE WHICH LEADS TO POTS and other dysautonomias.....there is a lot written on the internet about the symptoms of HIGH HISTAMINE...and you will see many are exactly the same as POTS and dyautonomia.....I know I have dysautonomia I just am trying to get to the underlying reason for it......I hope you find out too....MCAD is hard to treat too....I get sick from Benadryl and Pepcid and Zantac etc ..the Histamine blockers.......

Amy I feel the same way that any anxiety/panic I have is a DIRECT result of the dysautonomia.....I hope my doctors understand that.....

YU I too just had the TTT and HAD the EXACT same reaction as you did....at approx 19 minutes into the test I became very dizzy, my face went numb and tingly and my hands and feet too....my blood pressure started dropping dramatically....but my heart rate did not go up.....and at home my heart rate always jumps up to 120 when I get up from laying down.....more than a 60 point increase...but at the TTT it only went up to 85 the whole time...even when I was about to pass out.....strange....the put the table down right away when i started feeling like I would pass out....so maybe a few more minutes and I would have gone completely out and my heart rate would have increased...??? who knows......I don't think these tests are very good because they are in a controlled environment....I was strapped tightly to the table.....at home I have to bear all the weight of my body myself....it is very different.....anyway I did have the orthostatic hypotension....so we will see what the CARDIO doctor says about it.......if they try to tell me it is only PANIC DISORDER.....I will LOSE it.......because that is not what it is......it just started out of the blue when my thyroid had gotten very low.....and now I am doing better but not cured...that my thryroid is getting better on higher meds.....let me know what you find out......and I will do the same

Hi Everyone......so I finally got my tilt table test done today.....I had a bad night with an attack at 3 am of racing heart and shaking etc....TTT was at 8 am..... my heart rate usually at home goes up to 120 when standing.....on the TTT board It only went up to 85 ...LOL...so after 15 minutes I thought well this test is useless and wont show anything...since I am strapped in that must be why my heart rate is not going up.....well at the 19 minute mark I was chatting happily with the TECH and next thing I know I can't feel my face, arms, legs, feet etc....and I say to him...what is happening...I don't feel right....he says your BP is dropping.....then I started getting very hot...flushing....like sweats and I was about to pass out....the last reading was like 90/40 or something....they quickly lowered the table....and my blood pressure went back to 140/80 ...I was starting to feel better ......also I was VERY nauseous while in the upright position which I did tell them....once they laid me down the nausea went away.....I was released to go but coudl not really walk right...so they got me a wheelchair to my car......my legs were like rubber....the feeling you would have if you had just run a few miles really fast.....and my insides were shaking for hours after the test........A nurse came in at one point and said that is Orthostatic Hypotension.....what do you all think......why didn't my pulse shoot up like it does at home......and what do you think I will be DX with if anything......Ok thanks for reading and replying.....

BLIZZARD... glad you got them under control....how did you do that ??? my BP is fluctuating like crazy....the highest it was was 268/168 and I lived ....it was close....and very very scary.....now they are running....140/75 about laying down and drop to 90/50 standing...ish....but sometimes they stay normal when I stand...it depends on hydration I think...??? my Pulse is still going from 65 laying down up to 120 standing.......I get my Tilt Table Test next week...I am scared of it.......having stress test today...scared of that too....it doesn't take much to scare me these days......

MY B12 was very high too and my doctor told me to stop taking it.....I wonder if I have the MTHFR thing.....I will ask them to check it but I doubt they will ....they just keep referring me out to other doctors...ugggg........my level was like 1000 ......I thought maybe it was because I had just taken my vitamin an hour before the test....I will check into this though.....

peter why did they put you on the BETA blockers in the first place.....what symptoms did you have BEFORE the beta blockers....cause I thought the BB were suppose to help the dysautonomia ?????

thank Jklass44 ......my tail bone has hurt for quite a while too......so many nerves in our spine....that go to every organ etc....my spine is a mess.... I had been doing better just laying in bed and resting....or standing even....even though my HR goes up....but after sitting for that hour when I got up..... wow.....I will try 10 minutes of sitting then 5 standing then 10 sitting etc etc.....to see if that helps.....I miss doing my work.......

yes i have this it happened today on my face scary

Hi does anyone have issues after sitting for like an hour or a little more.....so I have been mostly laying in bed and getting up and standing for the past few months due to my new illness......I used to sit and sew for 6 hours per day with getting up from time to time.....today I thought I was feeling up to getting out of bed and doing a little bit of sewing....my blood pressure had been good and heart rate not too high ..only about 110 on standing....so I thought I could do this .....so I sat on lots of cushions and began to sew for about an hour....the last few minutes of my sewing time I started to feel funny.....not like I was going to pass out but my face went numb and tingly....weird ....and then I just felt sick to my stomach etc.....so I had to quit with the sewing.......so my question is has anyone else had this happen to them....and can Dysautonomia be caused by spinal problems...because I have bad spinal issues...herniated disks and degenerative disk disease....could those cause or make worse dysautonomia...thanks for any info