lissy

I have had symptoms for at least 15 years but didn't become as ill as I am now until 2 1/2 years ago. 2 1/2 years ago I felt constant brain-fog and so fatigue without hope or motivation. My thinking is becoming clearer and I do have more mental motivation, I haven't tried any medications as of yet, I have tried to allow my body to naturally heal. I know too much activity , stress, and not eating or drinking right sends me into a downward spiral and its hard to get back balanced. I wish someone would post all of the conditions we should be tested for that could be possible culprits or actual conditions that cause or mimic dysautonomia and that might help some people get more accurate treatment. Never lose hope or faith and if you come to realize that this is something you have no choice in and no matter how upset you allow it to make you, that actually will make you worse off a positive mind is the only chance for healing. We all go through the stages of anger, grief, denial, depression and acceptance over and over again and once you feel like you accept something you can feel defeated honestly changing your mindset to this process is the best thing you can do (Mind over Matter) is a fact, become blessed for what you can do and what you do have and try your hardest to keep that concept no matter what. I would admit I haven't had much recovery physically but mentally I have and I am glad for that because depression can consume your life in every way. Sending uplifting prayers and healing your way:)

Hello On Halloween I took kids trick or treating and walking about a block but was experiencing slight chest pain and in my back, yesterday I wasn't feeling to well and bent over to pick something up and felt the pain in the back and gurgle in my heart and I just didn't feel right. So I went to the ER when they took me to a room I layed down and had severe chest pain, tachy , and felt like my valve was gurgling along with extreme anxiety. They did the EKG and said my heart was just really fast but it was ok, they did the blood test for heart damage said that was normal and then did a chest CT and said I had a small section that collapsed in my lung but it wasn't bad enough for a chest tube and it could resolve on its own or come back if I get worse and follow-up with my doc, and something about pleurisy. My whole left side of my chest just doesn't feel right when I bend over or lay flat then sit up it feels like something pops or something is rubbing and if I lay on my left side or flat I get these palps just like it felt when they told me in the past I had Mitral Valve Prolapse. I called my doc today and her nurse called back saying she'll see me in 2 weeks I was so angry I'm suppose to be seen within 3 days (told my ER) and she then said to see the cardio I seen before and I had actually called him yesterday before I even went to the ER and hes out for 4 weeks. So I have been seeking a new doc but in the meantime I will go to the ER to get my follow-up and have them refer me to a cardio to make sure nothing else is going on. Has this happened to anyone or does anyone have any ideas what the heck is going on with me??? thanks Lissy

hey all, I am okay he did get out and is here. And I am doing okay but I have had some medical emergencies going on so I haven't been able to post. Thank You all for being here for me and right now I am so worried about whats going on physically I will start another post for that topic but this issue has to be set aside for now. Thanks again Lissy

Hello, Well my children are almost 4 and 2 1/2 and one is in pre-k only a few hours a day. After my post things got so bad and lets say hes in jail for the weekend...I have had 2 hours of sleep in 2 days and nothing to eat today I have lost 5lbs this week alone. I'm glad hes away but I know I have to get out of here before he gets out . I have mental strength I can get through it its just the physical part I'm worried about. I'm so overwhelmed and hurt and this all seems like a nightmare he busted the door down twice lastnight and they finally took him, I'm scared and so exhausted . I really need some peace to get myself together to tackle everything ahead of me. I just need rest right now and 2morrow with be better with a clearer mind thank you both so much

I have had severe emotional stress for a few years now, I was actually under severe stress when I became ill. And I'm beginning to think its preventing me from healing in anyway...I know I have to change the situation that is causing the stress but its going to be very hard for me physically , but I know its best for my health. I know I'm not getting straight to the point but I'd rather not put all the details online. I guess I'd like to know how many have began recovering after getting rid of some major issues in life and was it hard having all the responsibilities on your own with NO help? I need Gods assistance so bad and please pray for me.

Yes I get it ,and I also get a vibrating sensation ( like a BUZZZZZZZZ) in my brain when I hear loud noises or my kids are moving really fast close to my face and talking non-stop LOL a 4 and 2 1/2 year old you know how they can't sit still or be quite:P

Well I was 5'3 120 healthy and had energy an appetite and looked very very healthy before I got sick. In my worst periods I have gotten to lows in the 90's no appetite very unhealthy appearance pale, dry skin, just awful. I have times throughout the month of NO appetite and I lose weight so fast, I can force myself to eat and make effort to gain and get weight up to 100-105 and a bad period will come and I'll lose it in a few days. Recently I have been drinking a few large milkshakes a week and its helping keep the weight on somewhat. One of my cardios said if I gain weight it would help with the symptoms vascular wise... I am making a huge effort to gain to see if it helps but its so hard to eat when not hungry and also if I wait to long after I get a craving to eat I get so sick and then can't eat so its very hard to balance it out. I always thought I had a fast metabolism and it would slow down the older I got but that must not be the case?? Maybe it does have to do with the weight and adrenaline good thought.

I have brought this up as a Major symptom when I had my 1st consult with Cleve.Clinic nothing much was said except they have heard of it with other suffers. Which didn't really give me a reason as to what or why this is going on. I call it overstimulated by life, its so similar to an anxiety attack that it must be brain chemical related. Too much or even a normal amount of stimulant Noise, Visual, Temp, Movement sends me into a deer in the headlights . Having to consistently have a balance of minimum everything, you basically have to become a hermit even though you don't want to!!! . I know we can't just lay around in the dark in a quite house especially if we have children and families.Maybe thats why younger adults have a quicker better chance at recovery they don't have the obligations and responsibility we have and they can mentally and physically rest. I have no suggestions besides avoiding alot of situations but thats no fun, so I just go everywhere I want to now ,and know its just something that is going to happen just gotta live. And it is definitely a cruel illness the one that makes you look at life from a different view and it slows you down to the point of where you can almost not make any more mistakes in your life ( Meaning all you have to do is sit around and analyze everything in life). Lissy

Yes I've been told that because just drinking water alone can dehydrate you.

Hey all, I don't know why I've been feeling so awful lately the weather fluctuations or what...I noticed my menses was shorter sooner and lasted less which has never happened ever! I am so dizzy and disoriented which I get every time I have a cycle but my cycle is over and its getting worse. I'm so tired of going through this honestly I have been so depressed for the past few weeks and I am really spent on trying to figure all this out on my own. I'm back at the angry stage and any encouragement and ideas on what else could be going on because I don't know anymore Sincerely Lissy

Sorry to cut in are you pregnant? I had hypoglycemia while pregnant and I also felt somewhat better at certain points during pregnancy...Also I had something called postpartum cardiomyopathy which I think had something to do with my dysautomnomia getting worse, I'm unsure but just thought I'd add that information. Lissy

Once again I need a antibiotic I have an abscessed tooth that actually needs to be pulled soon and I need to take this medication but I am terrified. Mentally I know I need to take it because the infection can spread but I'm so scared of having side-effects I haven't started it yet:( Does anyone have suggestions I feel like a baby!!! But this is a serious FEAR and once the appointment day comes to have it pulled I only imagine how SCARED I'm going to be... Thanks friends I really need to overcome this

Hi I truly thought it would be an endocrine issue but I've had all those tests... I believe we will eventually find out what is causing this disabling fatigue I'm hoping soon. Lissy

I am tired all the time I would sleep all week 24 hours a day I feel that tired all the time!!! Its been like that since I've been sick 2 1/2 years severely I have had a few months of relief from the fatigue but thats about it... I had to just deal with it:(

Yes its been lower at times and normal at times verses low 98% of the time. I haven't called my doc yet to let them know my heart rate is down but I think I should I really wonder whats truly going on and could smoking be the cause of tachy and blood volume vascular issues and by me quitting going to heal me??? I know it sounds crazy But how many have the heart rates drop to normal without meds?And is the heart rate the criteria for POTS or dysautonomia and would a 60 to 90 increase in heart rate still be considered this condition I'm as bit confused all I know is things are changing within and it all started when I stopped smoking and I really can't believe it. And Thanks everyone for support Lissy

Thank you guys so much for supporting me. Its been 3 days and its so hard but I know I will be healthier and so will my kids I wish I had never started. To you that have quit how long did it take to not want it anymore?? weeks, months, years, or never went away? Thanks again Lissy

Yes it is freakin me out the resting hr is so unbelievable to me! I just got results back from CC and am suppose to start taking fludro and midodrine because the low volume and venous pooling in lower limbs but I'm wondering if smoking was to blame in all this???

Hey all, I have been checking vitals since I quit smoking (Friday night 11pm) and my sitting heart rate is 60's and standing is 90's my heart rate so low is worrying me even after 20 minutes of standing HR is not going past 105. Is this okay???? I feel very weak and tired but I always did but has anyone else experienced this drastic change in vitals after quitting smoking? I quit cold turkey so no meds or anything that could be affecting in any way... Past vitals Laying & sitting HR - 85 Standing - 115-125 Now as a non-smoker laying & sitting -60-65 Standing- 85-105 Lissy

I got the Dx when I was rushed to the hospital and had a CT scan over 2 years ago but was told it was mild like 2 small spots and to quit smoking it probally would have never even been found if I wasn't having the shortness of breath and bizarre POTS symptoms, so I was told to quit smoking and take care I didn't need treatment or anything and I just didn't take it to serious until yesterday I was online reading and came across a some sites saying prognosis with emphysema is like 4 years I was never told that!!!!the nurse actually told me if I don't quit smoking I'd need oxygen at 45 and I am 31 now. So I took it as I could quit soon and I'd be fine? Does anyone know the true prognosis I haven't smoked in 24 hours and I am really worried if its too late anyway... I can't help from compulsively thinking about this someone please shed some light. ALSO I thought I was pretty young to have this disease 29 at the time of dx and had the alpha-1 test that was neg but I also found EDS having something to do with emphysema ???? anyone know of this? Lissy

After being a patient of 20 something doctors I found that it is a good idea to have consultations with perspective doctors so you know right off if they can meet your needs and if they are even comfortable handling so many issues. It saves time and unnecessary energy to have to do the doctor hop and I have found if you have a doctor that cannot meet your needs you will know from the conversation. Best of luck Lissy

I'm at an age (53) where everyone I know smoked marijuana in high school and college. If marijuana were the cause of dysautonomia then lots of people would have it. LOL well I just recently read some information on synthetic marijuana(spice gold all that stuff,actual incense) that was being sold in gas-stations and head shops and I was reading the medical facts about it and how it binds the the neurotransmitters and what the difference it had with how THC binds to the transmitters which had me thinking about some permanent autonomic nervous system problems . I should have added I wasn't talking about experimental use I'm speaking of BIG time smoking like *years ,daily ,every other day. I'll also add I was a BIG time smoker 13 years and didn't really notice my POTS symptoms until I finally quit and trying it after the 1st major so called panic attack I could never handle it again. Just an idea after I read this information was causing tachy ,blood pressure issues, central nervous system dysfunction and some other crazy problems, and no I'm not saying us on this site are smoking incense.

I have more question but only let me post 3??? Anyway this is just brainstorming and researching I'm a bit compulsive about causes. Thanks for participating

Hey all, I've been putting off the dentist for awhile now I have gum disease and my teeth really bother me. I always knew something was wrong in the past because my heart would race when they give me the shot and I'd feel really panicky. SO I stopped letting them give me anything or do any work! I need that deep cleaning so bad and some other work also but I'm am terrified. Dys-Doc just said to have the shot with no epi but from what one of you said it still makes your heart race so I'm very concerned now.. I've had 4 consults with dentists and everytime I tell them my condition they don't know what it is so I lose confidence in them ( I know not even GP's know about it so I don't know why I'd think a dentist would LOL..So I am in the same boat I don't know what to do. Maybe the hospital setting would be best because at least they can monitor and give fluid if needed.

I seen a show awhile back on that condition(PFO)sorry unsure of abv. where a lady had severe headaches and they nver knew what her problem was then they found that and repaired it and the headaches and other symptoms went away. Lissy

Hey Noreen we must have been thinking the same thing