lissy

I think it depends on the position of your wrist or arm its suppose to be elevated and at a certain level not just hanging down...I've had an error reading many times and repositioned and then it took. Lissy

I had a storm also and I felt the same way, I put on my headphones which I started using about a year ago to subject myself to stimuli (since I'm sensitive to noise) and it helps me so much. That has been my new med I do almost everything I am suppose to avoid and I feel stronger. I think the pressure change has something to do with the symptoms... Lissy

I was tested laying and sitting they basically said the positional change was to show where my blood flowed and didn't move back when it was suppose to at the accurate speed , actually mine was hyper-kinetic and low vascular reactivity. I also questioned after reading it in detail the best I could wouldn't I be some sort of anemic with low blood volume but was told No because anemia changes the size and shape of your blood cells and even though I don't have enough blood mass I have what I'm suppose to within the blood.I guess thats why a transfusion wouldn't help.I pool sitting and standing..... Hope this helps. Lissy

Yes I am hypovolemic, but I guess it is a part of dehydration haven't really figured out the exactly relevance of it yet so I can't say much else.

Thank you all and I understand pretty much everyone point of view. This is such a touchy subject to many and myself as well because I have had to stand up for myself against everyone trying to prove I was sick for so long (in which I truly am) regardless if I actually have Panic disorder I know I still have autonomic issues and that can't be changed besides meds or a blessing and I haven't been able to see if the meds can actually help me (PHOBIAS) I just want to get better I will never give into a unproven DX and I definitely don't want to be going backwards on my search of whats wrong.Maybe the 2 conditions really have nothing to do with each other...I have no clue ,thats why I posted this so my journey continues and I hope you all all having a good day ****and the symptoms I listed are ones that I have and I found a site I will post later it had at least 50-100 symptoms of anxiety and panic. Lissy

Hi Dani I have a question mine started with anxiety so do you have any information on it starting that way? And when you say mentally induced can you explain that in more detail, like is it something we control or is it caused by chemical imbalances? Another thing I should say is I'm not having symptoms only with standing or a panic attack episode this is daily and chronic issue for me( not nervousness or anything like that), I started with panic attacks that would only happen once every few months to more frequently and into a constant state of low, detached feeling and chronic fatigue along with the other problems. I have had adrenaline surges like if I drink coffee or caffeine and its not to scary just racing inside tachy maybe stomach discomfort:so I completely avoid caffeine and I use to think the panic attacks were adrenaline surges but I'm totally uncertain. I did have a norepiherine*sp urine tests not long ago and it was normal and I was feeling terrible (don't know what that means I'm not too technical about all the levels and how they were suppose to be taken they were checking for a pheo.Is it true with adrenaline surges you have High BP? or just during the surge? Lissy

Thank you Lieze you have been so helpful and compassionate towards everyone here and we all appreciate your kind words:)

Heres one article I found ...I will continue searching:) and thanks for the replies and yes I did see the article you posted thats what started my search and my new doctor mentioning a mental health issues causing alot of my symptoms. And I was at 1st offended but it really makes sense to me now after all these years. And I also have a pretty stressful life which I have mentioned in the past...I'll keep posting what I find and I will be getting alot of professional opinions on this topic. Because what if in my case and some others that we know we have Low B/P and tachy when standing that by itself should feel like??? and if you have a panic disorder maybe its causing the rest of the symptoms I have no clue but I am going to find out!!!. I am hopeful that this summer I will be better than I have been for the past 3 miserable years and to think years and even months ago if a doc would have told me they think I have a mental issue going on I would have blew my top! and now maybe just maybe I have to look into everything. And to add I have a family history of a few different mental illness.One more thing my 1st extreme panic attack took me to the ER and the doc gave me a zanax that was 14 years ago I took 1/2 and felt like a zombie, my breathing was shallow and I just didn't feel right at all and another time I was given something like valium and it did the same thing but worse I felt like I was completely losing my mind and it brought on a panic attack, but lexapro helped alot for the 3 months I took it. So doesn't that say something about the meds that I should take and shouldn't take? Like no Benzo's and use SSRI (except)zoloft it made me very very dangerous to myself:(? Sorry I'm cramming so much into this my mind is just racing today;) http://jop.sagepub.com/content/20/4_suppl/60.abstract Thanks again Lissy Lissy

Hello all, Has anyone found any medical articles on panic disorder causing dysautonomia? Real documents. I have alot of panic disorder symptoms and have been dxed with GAD about 7 years ago and then more physical symptoms developed and became worse throughout the years and here I am. I am dxed with low b/p and tachy when standing but all the other symptoms seem sooooo close to PD: Like the sensitivity to everything; Foods/stress/ppl/noises/lights/meds Phobias exsessive worry and searching for illnesses that can be causing all this. anxiety attacks out of now-where then sometimes triggered.... I have been tested for so much that I am beginning to think this is more of a mental health issue an imbalance of chemicals. I had read past posts about them overlapping but is there any research or study on it causing the low B/P and tachy? Also has anyone been treated for anxiety /panic or any other metal health problem found meds that have been drastically helpful( changed your life) wondering if anyone would still be on this site if they were totally better...I mean very often, because If I got better I would still come here to help others just not as often:)... Hope to hear some good news about this topic I am being re-evaluated by a physicatrist sometime this month and I'm very hopeful that I can get some type of improvement I know this would not pertain to people with autonomic failure and autonomic nervous system disorders , meaning that untreated panic disorder causing dyautonomia, but in my case- (My nervous system is intact) Lissy

Thank you all for replies, its getting alittle better everyday. I haven't been eating good for a few weeks and its making me weaker along with this pain! I got to get a grip real quick...I guess once in awhile we had to have out of the ordinary medical problems to make our POTS seem not as bad:) Lissy

How ya doing now? It took about a week 1/2 when I took that med the 1st time to settle everything and then it was bliss I thought it was a magic pill honestly. Gonna try it again soon. Lissy

I just posted a topic about my ongoing lung problems, I have had a pheumothorax a Small lung collapse(in my case) that was only Dxed with CT scan and also pleurisy. So if you feel its more than just muscle pain seek another opinion. Good luck Lissy

Well the day after Halloween I have a small pheumothorax (lung collapse) and pleurisy. I started having these pains while breathing Thursday and it went away and came back Saturday severe pain when breathing went to the ER and they did an xray and said I had pleurisy...So I am in so pretty bad pain the interesting thing is I asked the NP that seen me why would I be having these problems happen during my cycle? I mentioned that I read something about endometerosis affecting your lungs & brain in rare circumstances she replied NO I have never heard of that endo only affects your pelvic region. So I was thinking to myself OHHH boy I'm dealing with someone with NO knowledge so I decided to ask " do you know what POTS is or dysautonomia"; she said NO I'll have to look it up. I felt so alone thinking who is really handling my care do I actually have pleurisy or is something else going on I'm still kind of worried I will get in with a specialist soon but this is the reason why I have a phobia about medication I feel in a real emergency with *rare people what chance do we really have.

Leize, I would like to know what test the doctor performed to tell you these allergies if you don't mind? And when you were told about these allergies did they tell you what to eat or what to take if you were going to eat those items? It just amazes me to be allergic to some of the ingredients that are almost in everything that would be TOO difficult and were you told they are allergies or intolerances? OK, I love oatmeal but it makes me feel alittle tachy hot and similar to being hypoglycemic (which I have been dxed with that in the past) I think the heat of the food kinda affects me because if I eat anything HOT soups/etc, I feel the heat in my stomach and it makes me not feel so good for 30 mins-to an hour. I actually try to eat more carbs to keep on the weight but I am also having too many symptoms from almost everything I eat. I have thought what is happening from avoiding food then trying to eat normal its like I'm over stimulating my digestive system. Well I'll post more after I find out some more information when I see my doctor. Stay positive Lissy

Good morning everyone, I have these symptoms which have been discussed thoughout the years but I'd like to get some input and thoughts it may be helpful to gain some direction. 1st---My menstrual cycle of coarse brings on more episodes but it seems to be with PMDD type problems along with: More chest pain Draining my physical body(weakness, debilitating fatigue that grows by the day) Draining my mental energy severe brain fog and no concentration Higher B/P today is day 6 of cycle and B/P is 129/80 my normal is 90/60 Very bad anxiety attacks with tremors Hot flashes my body is HOT internally #2 Problem---I have this pain when I eat under my left rib cage area sensitive to touch it happens with no specific foods? It lasts about an hour and I have to massage my stomach it hurts so bad. Thats all I can post right now feeling terrible I go to my new doctor (yeah another one) May 2nd and I actually put together a letter of current problems and directions I'd like to take and also I start seeing a therapist for the anxiety to medications the middle of May also. Hope you all are having a good day. Lissy

I thought this was the reason for the med flornief right to retain fluid? If I drank as much water as I'm suppose to I'd probally have to go 30 times a day, one bottle of water makes me go at least 3 times...I thought it must have something to do with the kidneys, but what do I know.

I have an adult handicap brother which I take to appointments often and yes a power of attorney is needed! Bad experience at an ER with my brother he was unable to make rational decisions and the Dr. performed a lumbar puncture while I went home for a few hrs and I was totally angry and there was nothing I could have done because he legally could allow them (doctors) to do anything without my brother even understanding the procedure. Luckily my brother didn't have any complications from it but it let me know anyone in a vulnerable position in a medical setting definitely need someone to speak for them as the doctors will take it upon themselves to do whatever they want. Lissy

From what I hear older ppl have low B/P and weaker vessels. And I was recently told ppl with low B/P happen to live longer. Just a few comments

POT could cure Pots ....lol, seriously I was a daily smoker from the age of 12 till 21 and then I quit and started having alot of my Pots symptoms isn't that unbelievable I always thought the altered state of mind somehow made me numb to being sick all those years but what if it was actually beneficial. Guess I'll have to wait till it gets legalized in Indiana any try some indica. The only affects I remember back then was being very lazy and hungry unless it was the *bad weed* with the paranoia and tachy but didn't come across that to often luckily. Also to add I didn't have an addiction, no withdrawl ever I decided to quit one day and that was that. Lissy

I also agree about the strains theres no way I'd attempt to try Sativa that put me in the hospital for 7 hours with HR 150 resting and nothing would help bring it down!!!! and my mouth was like GLUE ,felt like my body was completely shutting down but RACING at the same time. I thought I was honestly going to die that day...Haven't tried anything else since then but I use to be a reg. smoker and only had a few bad times and that was back in the 90's and early 2000, POT was different then. I don't have a clue what they exactly use for medical Mary Jane? But if it was indica I'd give that a try just for increasing appetite and sleep.

I have had some form of this condition since becoming a parent and that was almost 10 years ago, but with the last child everything went downhill (3 years)she'll be 3 Sunday:) I had many moments of guilt, depression,and deep sadness about my "Motherhood" and I try to overcompensate with extra everything and less discipline, but I understand why I do these things. My kids are pretty young and are very understanding and helpful to me, I sometimes worry about them growing up too fast or having experienced life so serious at a young age ,but I think it will make them very intuned with reality. I pray everyday for God to make all of us better and I think about what kind of mother I would be if I was healthy and that leads me to feel one extreme to another ... depressed or hopeful about what its going to be like one day for my kids and myself. I know one thing I am better as a mother and person since becoming ill than if I hadn't.And if I get better boy we are gonna have SO much fun and activity and if not I'm grateful that I at least have time with them and they still can hear me and see me and I can have way function (I'm alive) even though I don't feel like I am sometimes. I do what I can and I go to events swaying while walking and if I'm just too ill I don't go and look at pictures or video and hope the next time I'm well enough .

I understand your frustration, I have never been dismissed as a patient from a doctor but I've dismissed myself many many times like (31) . The doctors I have seen pretty much just complicate everything and cause me more emotional stress because of incompetence, remaining arrogant just because the M.D status. So I think its good your doctor realized he couldn't handle your case and referred you else-where. I would also handle the skin cancer issues 1st. The autonomic issues in my case have been many years and sometimes I take breaks for months about pursuing it unless it was a immediate threatening issue, and coming here actually helps me work through alot of my symptoms just knowing most of the (crazy,spontaneous) symptoms come and go and don't need immediate treatment. Anyway best wishes to you and maybe you'll get more answers with the next doctor you see. Lissy

Well to me it sounds viral and I agree with the fever causing rapid rate and children get about 8 viruses a year, not trying to down play anything which I know can be very scary. Does he seem to get tired to easily while playing and has he been active most of his short life. My girls seem to dehydrate pretty quickly while playing and they complain of achy legs and their little hearts pound regularly , I don't know if I'm overly concerned I always worry about if I gave them this condition and watch for possible signs but they stay pretty active unless they have a virus and they have caught I think every one this year! With the zithromax I have taken it many times its the only antibiotics I take I'm allergic to cillins and haven't had serious problems with it. I wish your little one to be well soon and your probally informed enough to ask all the right questions when you take him into the cardio, keeping you in my prayers. Lissy

Hey, I've kinda keep this is the back of my mind...I had an epidural back in 2001 with the delivery of my 1st child and I was very very ill (don't know if it was dys,or cardiomyopathy) I came home from the hospital with excessive lower swelling weakness and couldn't care for my child for almost 3 months along with that I had a very stiff neck which I couldn't turn it from left to right it lasted 3 months and ever since I had the kinda sore neck can't really bend my head to chest or look completely up without having tightness and pain. So when I got completely ill 3 years ago I had more neck aching and it has since spread to my mid back spinal area. I did go to my family doc last month and she did an xray and said I had no curve in my neck its straight! Since then I am trying another doc, seems like I have to keep doing that just to get closer and closer to finding my true problems... Anyway I'm starting to wonder if my neck/back/spine is causing dysautonomia I seen somethings posted with some connections. I have one possible important clue: my father has a deteriorating spine along with tachycardia he was on a beta-blocker (antenol)sp? and said he felt so much better with the fatigue and chest pains. SO I guess I'm wondering also if the back sides could be causes the autonomic probs???I'll be soon going to a neuro or orthopedic doc so I'll post if I get some definite answers. Lissy

Well today I guess something is in the air with the thinking about fears of the unknown and frustration of wanting my life back! I felt of the verge of a nervous breakdown today like a hand full of other times since this condition began...I broke down and just started crying in the middle of grocery shopping thinking how in the world can I try to function like a healthy person when I know I'm not, I keep pushing and pushing to only feel worse and mentally I am now in a fog. I hardly ever drive and after that breakdown I was so angry at my illness and what its takes from me daily I said I'm driving home which is a 20 minute drive, the whole way gripping the wheel telling myself be calm and breathe. I have a fear of NOW my mind doesn't even allow me to think about later or what its going to bring. I'm so tired of being dependent on anyone I just want my life back I feel robbed and who do I blame? Sorry but I am feeling mentally weak and had to get that off my chest.Maybe 2morrow will be easier I have thought of never leaving the house again because it is just too much. Lissy