mae

Thanks for replies, the angiotensin II sounds interesting I will have to look more into that....I have been trying to get very technical with all these problems Dysautonomia is a pretty complex illness. I haven't found myself able to have confidence in experimenting with any meds yet, I lost faith in the medical field after going to doc after doc and being told nothings wrong or its depression. Also whenever I take any type of medication (antibiotics, motrin etc.) I have EXTREME anxiety attacks and I get all the side-effects practically , so I don't take anything. I don't know how long I can take this!!!!hopefully I get something figured out soon. Mae---have a great weekend if you can:)

Thank you broken_ shell yes it makes sense I have been looking into safe well so called safe Birth control to lessen the fluctuations cause I indeed feel every cycle and not just once a month I mean the WHOLE CYCLE. I have read the depo shot was good, but since we can have negative side-effects that wouldn't be so great cause it takes many months to clear out of the system . The mini pill seems to be like a good option, have you tried anything yet? I'm 30 and have considered a hysterectomy because it gets so bad , but I don't have to much faith in surgery and keeping my vitals stable they don't know what to do with them now, so I know they would be clueless if I was put under. And even then my body wouldn't handle no hormones to well.... Mae ****pray for a better day

Hi, No offical DX of it but was told it was raynaulds but its doesn't happen when I'm cold its mostly all the time and from the pictures I've looked up it looks like Livedo reticularis I think its the blood pooling that makes more sense . Do you have it when you first wake up still laying in bed warm? Thats the only time I look normal... and I have it on my arms, legs stomach. Not on face or chest or back , I'm tired of looking at this blotchy looking skin I use to tan but can't stand the heat anymore so maybe a bottle tanner whould make it look better? Just cautious of chemicals now. Mae

Hi, That has been my only abnormal bllod tests since I've been dealing with my illness. Recently had liver ultrasound was normal so maybe its POTS related not sure yet just letting you know I have the same problem and it goes from normal to elevated pretty much every month. Mae

Hi, Its monthly time again and symptoms are way worse and become even worse after cycle???? Does anyone know why this happens if hormones are normally functioning? And does anything help? Also anyone have swelling in feet after bathing or standing / walking long? I know hot baths aren't a good idea but I am trying to lower temp its hard.... and one more question is the tilt table test necessary if you have high heart rate upon standing and low B/p upon standing consistently? Thanks Mae And how do they determine what type of dysautonomia you have ? (without being a labrat?) Im always overstimulated is that a sign?

Hi, I'm not official yet about a week a way I hope. I am also sick all the time for the past year....For four days until today I actually felt better than I have in a long time and I thought I was HEALED or something, and it just hit me out of nowhere bad as I've ever been.....Its hard and it kinda made me more depressed but I have to be grateful I did feel like I felt before THE ILLNESS CAME, but I was scared and cautious and it felt unreal. The only thing I found that could have improved me for those few days is it is when all hormones were at their peak and it goes downhill from here hopefully next month I'll have another Healed experience. This condition is affecting every aspect of my body mind and soul, I'm in a constant nightmare and I feel like I'm trapped in a deteriorating body, I wish I could just lay down and feel slightly better but I have 2 girls one is 2 and one is 1 so I'm constantly jumping up and everything else that comes along with motherhood its SO HARD I say WHY ME alot but I stop and say I could be worse I have to keep going . Getting a DX will help I believe so then I don't have to think I'm dying every minute of the day, because thats how I feel. I feel punished for something and I just wanna fix it . Sorry I sound alittle crazy when I feel this bad I tend to ramble. I sometimes think I have brain cancer or something but I had an MRI and it was completely normal. I feel like I can't think straight, I get numbness, always funny looking skin blood pooling, my face is hot my fingers are freezing, outta breath doing nothing, heart racing everytime I stand, dizziness -----rocking on a boat and I have motion sickness from boats elevators,escalators. Overstimulated when I leave the house like everything is moving so fast,loud,bright, and inside I just wanna scream and say STOP!!!!!!! I never imagined this would happen and I'm sure none of you did either its good to know I'm not alone in a sense but I hate we have to suffer and its such a mystery. Its the worse feeling to go to a Doctor and have to prove your really sick and then once they do the basic things Like check heart rate while standing and do the special BP check then they start believing you. But thats months to years later since the illness began its really ridiculous. And I'm really pissed!!!!!!! Most of us knew our own DX before the doctors had a clue you know why because WE took the time to research and we care about ourselves I searched for a year straight online (****THANKS GOOGLE****) every symptom that fit a disease I had to go to the doctor and say test me for this and one by one "I" ruled them out why the **** do they get payed????? I've had docs say your depressed, and I say well yeah why shouldn't I be you can't find out whats wrong with me! I've had docs say you have Fibromyalgia and I didn't have really any pain. And many more say nothings wrong with you while looking at my purple feet when standing or one said Raynolds and I wasn't even cold , they just GUESS now and hope you leave and never come back or go to someone else. Maybe the doctors should use GOOGLE because everything they learnt in college must have been forgotten they should have FOLLOWUP courses like hairstyles they are suppose to have Present knowledge health issues don't stop when they leave school .Okay I'm done and so sorry I really had to vent...... Thanks for reading Mae

Hi all 2nd post here and counting, I 1st started off having anxiety attacks before the birth of my 1st child 7 years ago then actually DX with Generalized anxiety disorder after my second child was born. And with every child born I developed more and more symptoms which may have been a misdiagnoses and maybe I had POTS all along or anxiety was a clue of some other problem who knows... I have lived with the dizziness for 7 years it started immediately after my son was born and they docs never looked into it and always had lower BP and finally they just put it together. I think Low Blood vol. is causing my dysautonomia since it has gotten worse after every pregnancy, theres some type of link I believe. Maybe POTS caused anxiety or ANXIETY caused pots. Now I have anxiety attacks well they feel like it with no triggers actually looking over the list on DINET triggers eating,heat,menstrual,lack of sleep,day after drinking alcohol ----when it 1st started years ago those were my triggers. So I believe I have had this for 7-8 years and having more children made my symptoms way worse. Sorry to go off topic I got carried away. Mae

Hi all this is my 1st post here, I am in the process of DX with some form of dysautonomia. I use the motorized scooter in the stores that have them, I rarely go out because of the rapid heart rate from standing and overstimulation. I thank god for those scooters I'm hoping to get one prescribed, its seems to defeat the purpose if you have to wheel yourself that still increases your heart rate. It makes me more comfortable when I use the scooter I let my 2 year old ride with me on my lap and I just look at it like AT Least I get to share memories with my family besides being stuck in the house . I missed 1 whole year of doing any type of activities untill I seen those scooters at a trip to walmart and now its a trip to look forward to. Mae