all4family

Hi Mae, I also thought back over my life after diagnoses, and I thought of what I had thought were anxiety attacks that I had had throughout my life, like when I was in a dressing room, at 18 years old, and had my hands over my head trying on clothes, and I suddenly felt my heart race, and thought I was going to faint. I later told a doctor about it, and they said that people my age don't have heart problems!!! So why are there so many pediatric heart doctors?? So I went about my life. Also when I was around 14 to 17, I just kept saying all the time that I don't feel right, I just feel like something is wrong. I felt spacey, and like I wasn't there most of the time. My mom was worried, and took me in to see a doctor who did some kind of test with these long metal probes, that had to be put down my nose, and go down my throat, and I was supposed to go to sleep...the outcome must have been fine, because I didn't go back. So I hear what you are saying. I never was afraid of anything I could think of, but usually thought of something that might have been scaring me from my past....But now I remember other things. Like the fact that just before that happened I had been accidentally poisoned with bug spray. Gosh maybe I was having anxiety that I was a bug!!! Just kidding....Anyways I think that physical problems get blamed (more often for women especially after having children!) on anxiety. You know...just an anxious woman! If it happens to a woman look for a mental problem first! I know not all doctors are like that, otherwise we wouldn't be here! But a LOT sure are! Anyways didn't mean to go on so much...just wanted to say I understand where you are coming from!! Suzy

Hi Sophia, Sorry don't mean to go off topic, but just want to find out. I have generally very low supine b/p, but I have had some very bad spikes of b/p while sleeping. That was actually one of my first severe symptoms was waking with a blood pressure of 186/112. My doctor said to elevate the head of my bed too, although I haven't done it yet. But I did read that somewhere else too. If I am only getting the high blood pressure when laying occasionally, or in spikes, and I actually have hypotension when laying down sometimes, like 76/36, do you think that I should raise the head of my bed? When I am feeling my worse the best position for me is (and I have rode in the car this way before!) with my head hanging over the edge of something, and my chest in a downhill position. If you have any advice I would appreciate it. Thanks, Suzy

Hi Mae, Welcome! though so sorry for what you have gone through that brought you here. I have to say as I read your post I teared up, and then said yeah through the whole thing in agreement and understanding. I say why me all the time! It's hard not to. Why any of us?! I want to scream and say stop too, but I'm sure it would just make me pass out!!! I am so sorry that you are going through this with your kids at such a young age. According to my doctors I had everything from anxiety, to conversion disorder, to hypochondria, and the final straw for me was anorexia!!! I was told I drank my water wrong, and swallowed air, and that is what was causing my vomitting! I know you will find a lot of support and understanding on this board!! I will look forward to talking to you. Take care! Hugs Suzy

Hi Dani, I also share the fear of taking a new medicine. After I had one problem after another to medications I got to a point I wouldn't take one. I completly understand what you are saying about not wanting to make things worse. I only had a few symptoms until I started with a beta blocker, ativan, and asprin. All on the same day. Then one year and many medication mishaps later I couldn't even stand up anymore. But I just found out about a month ago that I don't metabolize drugs properly. I am missing a gene. It really explained what I had been through for 5 years for me. I hope you find a soulution that makes you comfortable. I agree with what someone else said about cutting the pill very small, or getting it in liquid form. Take care. Suzy

So sorry to hear about the trouble you are having! I promise to eat twice as much while you are in the hospital for you!!! ah ha ha ha!! Just kidding. I hope all things go really well. I really hope you don't have a tumor cuasing your insulin problem, but it sounds like you have a really good doctor on your side working for you!! I hope that gives you a lot of confidence. You will be in my thoughts, and prayers! Take care. Hugs Suzy

Hi Dani, I have a lot of visual symptoms. they were worse when I was on xanax. For me everything looks dark, and on occasion very bright. It's like I am looking through sunglasses most of the time. I like your description of the vasaline on the eyes. I see like that too. Everything will look like it is leaning, and just not right. I also can't tell very well how close or far something is. But like with all my symptoms it gets worse on some times then others. Yet my vision tests always come back just fine. I hope you get some relief from this soon. I know how frusterating it can be. Suzy

Hi AJW, No pearls here either, but I sure do understand where you are coming from. It seems there is always another blood test that they can do though they think it will come out negative. There is always another test that we hope will be negative, but at the same time hope to find a way to feel better. And having the streess of money and family problems piled on top of that! I really feel for you. It sure would be nice if we could go to the doctors one time give some blood and come out with all the answers we need wouldn't it be? Glad to hear all the blood tests came back good so far! Glad you don't have signs of autonomic failure! I will keep you in my thoughts and prayers...take care. Suzy

Hi Everyone, I just wanted to find out if anyone else has these problems...One thing is along with all my other issues with my eyes, they turn red. Not just a little irritated red, but like I've been in an over clorinated pool in the sun all day then had them scrubbed with a brillo pad red. The redness sometimes extends to my skin around the eyes. It is very painful. Does this happen to anyone else?? Then the other issue (which is a little more embarrassing) is my bladder leaks all the time. Especially when I sneeze, laugh, or cough (which I do all the time) I also won't even feel like I have to go to the bathroom, then all of a sudden there it is, and I can't quite make it. Does anyone else share these issues with me? Does anyone know if they are related to dysautonomia at all?? Thanks Suzy

join me in with the never feel normal crowd. Even when I have my good times (sure wish there were more) I always feel like there is a chance I am GETTING better, but still don't feel normal. Laying donw improves my symptoms, but that just makes it tollerable, so I won't fall down! I feel that I am always fighting fatigue and pain. I hope one day it will go away for everyone! Suzy

Well I am glad to see that the message I was tying to send hit it's desired target! The ones who needed it! We can spend all day and night arguing, and discussing weather the heart rate does this or that, or what conditions we have, but in the end, we all must feel bad, or we would certainly be somewhere else doing something else with our time. By the way I seen at the top that it only takes 4 of the symptoms to have a diagnoses of panic attacks. Jeez...I have most of those symptoms 24 hours a day! Jan, thank you so much for your kind and caring words....they meant a lot to me. I hate to see people beat themselves up like this...I did it for way to long, and have no intention of doing it one second longer!! And you are so right we are judged way too much...even by ourselves, and others in the same boat..I hope things are going good for you too.....take care. Janie, thank you for sharing so honestly! I fel the same way as you do about having peace of mind!! knowing that there was a explenation, and that I wasn't going to die, made a huge difference in how I handled what was happening to me. I'm sorry about your moms health. My moms health isn't good right now either. I will pray for her. I listen to some relaxation videos on you tube, that I really love. I don't have there url right now because I am on a different computer, but if you are interested pm me, and I can send you them (after I find them.) One puts me to sleep almost everytime! btw...I LOVE your POTS treatment!!!! I am beginging my treatment today! I hope everyone will give themselves a lot of credit for what they are going through. This isn't easy for anyone!! And I think everyone just wants to do all that they can for themselves to feel better!

Hi, I am so sorry for what you are going through. I think it is very nice of you that you put your own physical comfort aside to go and pick out a gift for your girlfriend. I know when you feel so bad how hard that is even in the best of circumstances. I found when I was sick, and didn't know what it was that a lot of well meaning people told me how to "feel" better.....eat garlic, take vitamin C, you need to eat something, don't eat that food it will make you sick. What I found out was that less stress helped a lot, and that included not spending all my free time listening to others tell me why I didn't feel well because I wasn't doing what they said. (even if I was) I don't know anything about you, or your limitations, but if you were already driving yourself, and your mom was just causing stress, then maybe a trip like that by yourself would feel better then trying to deal with the stress of going, and arguing with someone. I have learned to just walk away from arguments if at all posible. Stress can bring on strong physical feelings even in healthy people, so they are sure to be worse in someone who's ANS is out of whack. I know for me that doing things on my own was hard, as I was afraid I would faint, and I had a problem with vomitting if I was standing, and did it in public constantly. But doing things on my own quickly is easier then to do things with someone who stresses me out. I find my own ways around things, and find that it is easier to face the stress of just being "out" if I can control the situation. I also try not to give to much information to someone who has a tendancy to tell me what to do, or stresses me out with the information I give. In another words if I don't say I am going to do this to feel better, they can't say it's a bad idea. I hope things get better for you, and I understand how you feel....take care, Suzy

When I had IV contrast dye, and whatever they gave me to pretreat me for a reaction, I had blistering hives at the injection site, plus a huge bruise. Now I will normally bruise if I have my blood drawn, and it blows a vein, but this was much worse and covered a much larger area. My skin also peeled after the blisters went away. But I have also noticed when I have random h ives that I get purpilish skin where they were. I always just think it is because I have scratched to hard there, but I don't know. It looks like my skin is made of paper, and the blood just kind of all comes up to the surface in little dots. I don't get this all the time though, just after a real bad case of hives. Sorry for what you are going through with this....no puppys! That makes me so sad for you!!! I sure hope you can have itchy free puppy days soon!! Take care, Suzy

Hi, All I was trying to say by this is that I have seen a lot of people on here, (and I'm sure there are a lot more that aren't posting about it) recently worrying about weather they have anxiety, and or depression. I hate to see people worrying themselves about this, when they have enough to worry about with dysautonomia. I am saying we know our bodies best, and I personally wish I hadn't worried so much of my time away about if I had a "mental" issue or not. Maybe I wouldn't have sat in silence about the pain and illness I was feeling, because I didn't want to hear one more person imply that if I wanted to feel better all I had to do was change my thinking. Maybe I wouldn't have lost a great deal of my self confidence, and I could have focused on something more important like getting a diagnoses for what was really making me sick, then finding a plan to improve my life. Maybe I wouldn't have kept taking pills that were making me sick, that I was told I was just "afraid" of. Maybe just maybe I would have said no, then I wouldn't have gotten as sick as I did trying to treat a mental illness that didn't exist. Maybe I wouldn't worry about going to doctors now, because why should I bother, they didn't believe me, or help me when I needed it. I am trying to say that if we could just have some compassion for our OWN selves for what we are going through, and understand that what we are going through will cause feelings of anxiety, and depression, but that does not mean we have a mental disease. It means we have some very normal feelings to feeling sick all the time. And to be good to ourselves, instead of thinking we should be happy all the time. (which by the way would be considered a mental disorder too!) take care, Suzy

Thanks for posting this. I have pain all the time, and this would make sense to me. I will be looking into this more. Thank you. Suzy

Hi, I was wondering if anyone can tell what these tests are. I I got my appointments for May, but they don't seem like the tests I was supposed to get. One says Mcsb lab fasting lab, which could be the mast cell test again. But the other one says Cardiovascular An, Mcsb-Ecg Card Electrocardiogrm. Which I know what an ecg is, but I don't know what the rest of the stuff is, and I have already had one done there. Any ideas?? Thanks, Suzy

Hi Everyone, I have seen a lot of discussion on this subject lately, and just thought I'd chime in. I did a google search of POTS symptoms, and Panic attack symptoms. The first thing I noted on the search was that by the time I had entered "symptoms of PO" there was no matching results. You know what I mean? The suggestion the computer gives you for things common to find. Then I looked up "symptoms of p" there already on the list was panic attacks. As I continued to type, "pani" I had a list over 10 long of things to search for. Here are my results...If you notice I did them both from wikipedia, so that the results would be from the same source. DSM-IV Diagnostic Criteria for Panic Attack A discrete period of intense fear or discomfort, in which four (or more) of the following symptoms developed abruptly and reached a peak within 10 minutes: 1) palpitations, pounding heart, or accelerated heart rate 2) sweating 3) trembling or shaking 4) sensations of shortness of breath or smothering 5) feeling of choking 6) chest pain or discomfort 7) nausea or abdominal distress 8) feeling dizzy, unsteady, lightheaded, or faint 9) derealization (feelings of unreality) or depersonalization (being detached from oneself) 10) fear of losing control or going crazy 11) fear of dying 12) paresthesias (numbness or tingling sensations) 13) chills or hot flushes The hallmark symptom of POTS is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 10 minutes of head-up tilt. This tachycardic response is often accompanied by a profound decrease in blood pressure and a wide variety of symptoms associated with hypotension including:[4] lightheadedness, sometimes called pre-syncope (pre-fainting) dizziness (but not vertigo, which is also called dizziness)[5] exercise intolerance extreme fatigue syncope (fainting) Chronic or acute hypoperfusion of tissues and organs in the upper parts of the body are thought to cause the following symptoms: cold extremities chest pain and discomfort disorientation dyspnea headache muscle weakness tremulousness visual disturbances Autonomic dysfunction is thought to cause additional gastrointestinal symptoms: abdominal pain or discomfort bloating[6] constipation diarrhea nausea vomiting Cerebral hypoperfusion can cause cognitive and emotive difficulties: brain fog burnout decreased mental stamina depression difficulty finding the right word impaired concentration sleep disorders Inappropriate levels of epinephrine and norepinephrine lead to anxiety-like symptoms: chills feelings of fear flushing overheating nervousness over-stimulation Symptoms of POTS overlap considerably with those of generalized anxiety disorder, and a misdiagnosis of an anxiety disorder is not uncommon. Ok. first, like I said above there is plenty to look up about panic attacks. Why because it is easier to diagnose, rather then to look for something esle that could be causing the problem. Yet there is nothing that comes up on my suggestiong list for POTS. If you look at the symptoms from the panic attacks almost every one of them is in the symptoms of POTS. Though worded differently. Like for example in the Panic attack one it says "fear of dying." (blame the patient they are afraid to die. (who isn't?!)). Under symptoms of POTS you will find "feelings of fear". (saying there is a feeling of fear there, but it is not because you are just afraid of something. The second thing that strikes me is the heading before panic attacks. It says "DSM-IV Diagnostic Criteria for Panic Attack" the reason for this heading is because to diagnose a panic attack the only diagnostic criterea you need is if my memory is correct, is 6 of the symptoms on the list. (I could be wrong on this number) If you look above POTS it does not say the same thing. This is because there are diagnostic tests to diagnose POTS. TTT, blood tests, etc etc. etc. I also like the statement on the bottom that says "Symptoms of POTS overlap considerably with those of generalized anxiety disorder, and a misdiagnosis of an anxiety disorder is not uncommon." So we have one diagnoses that is based on symptoms alone, (and you can ask any therapist, or psychologist) there is no blood test, or other scientific test to prove the dignoses of anxiety, or panic. Yet there is sicentific tests to prove POTS. And really if you think about it, it would seem silly to say that someone is being anxious about being upright. (although my doctors did!) I am certainly not saying that someone does not have feelings of anxiety, or even depression. I am simply saying that it is not a disease to have feelings. ANYONE suffering the severity of this or any other chronic illness is bound to feel anxious or depressed. And these feelings are made worse when well meaning doctors tell us that we are creating these symptoms in our head because we fear something, or whatever their reason is. I KNEW that I was getting sick on the medications given to me, but I was told that I was AFRAID to take medication. (Then why was I on 4 at one time?!?) And if someone IS feeling anxious or depressed, it sure is a good idea to talk about how they are feeling...but to worry about being labeled with some disease that can only be measured by symptoms I just personally wouldn't do. I think it is natural for any of us going through this to feel this way at times. And even harder to tell why we are feeling the way we are. Is it a physical symptom? is it a mental one? If I just stopped thinking about it would I feel better? I think we should really stop beating ourselves up! It is what it is, and all we can do is deal with the symptoms we have one day at a time. And if you feel sad, or anxious, tell someone. Even if you gotta find someone on the street to talk to, talk. I talk to God. You can talk to your dog, or cat, or your wall, but it feels good just to say "IT STINKS TO FEEL THIS WAY, AND I DON'T LIKE IT!!!" OK. This was just my 2 cents, and I hope it helps someone. I hope no one will take offense to anything I have said because this is just being offered as support. If you feel you have anxiety causing your symptoms, that is fine too. You know your body best, is all I am trying to say. I wanted to believe in the begining that it was anxiety. (then I could feel better!) But no amount of blaming my mother, my father, my childhood, anything that I could of ever thought of in life that ever made me upset in any way, made me feel better. Take care everyone, and I hope you all have a happy symptome free day! (we can hope anyways!)

Hi Jennifer, Anything that says massage on it I'm in for!!!! I have a massage mat, 2 massage neck pillows, actually 2 different massage mats, a percussion massager, a facial massager, AND I pay my kids to give me massages!!!! (I'm sure I am missing a few kinds of massagers)! Thank you for posting this....it may be a happy Mothers day to me too!!! Oh. I guess the important question is, is it supposed to help with blood pooling? Thanks for shareing. Suzy

I thought I had accidentally sleep walked into my living room, and told everyone what my house looks like!!! Thank you so much for saying that. I think I know it somewhere in my head, but I feel so guilty sometimes! I thought if I ever knew why I was sick I wouldn't feel so bad anymore, but I do! My husband has really let go of expecting anything of me, but I need to! I am gearing up right now trying to think of how to make dinner, and have sent him to the store for food for my famous burittos. I have gotten a pattern down, of prep, go lay down, cook, while I'm laying down, and back and forth and back and forth! But the problem is when I do that I can't usually eat for a few hours afterwords, and I feel bad for a while afterwords. We do a lot of prepared stuff, but somtimes I just like to cook, and it saves money. But you are so right, if I died today I would regret not laying on the floor and eating with my family and ejoying there company. I wouldn't regret not having run back and forth like a lunatic, trying to cook, and then crying my eyes out in the bedroom because everyone is eating, and having a good time without me once again. I hope I said that right!!! brain fog! Well I am so happy that I got your message when I did. I am taking your advice as I type! My husband just called, and I said I wanted to make my burritos for dinner tonight, but....and he interupted me and said I'll grab some pizza's while I'm out! What a guy! Thank you so much! I am going to save a copy of this, and whenever I don't feel worth much I will come back and read the words that I am worth far more then a clean floor! Ok...all teary now! gotta go. Thanks so much Hugs Suzy

Hi Cat Lady, that is hysterical! I am glad I made you laugh. You made me laugh too! All I can think of is dumbo when he sees all the pink elephants! Or Winnie the pooh! I have a family too that believes that all things should be perfect. I won't let many people past my front door! Thank you for saying that, because I just need to be happy with what I can accomplish. When I was first sick, or when I am worse I don't even attempt laundry, or any cleaning. That is when I just hope for the next minute to be better then the one before! I like your idea of a check list. I have done that before, and found I was doing more then I thought I was! Sometimes I am happy if I comb my hair by myself!!!! Yes for me it is kids first, laundry second, and dogs third! But really I make the kids take care of the dogs My poor husband! Anyways, thanks for understanding. Suzy

Hi everyone, Thank you so much for your replies. I am so sorry I didn't get back sooner. My laptops cord stopped working, and I tried to repair my dinasour desktop just to use it, and it took me all day yesterday! (I least I didn't have to move it anywhere!!!! ha ha!) Hi Kimi, I feel for you. My husband used to be a sheriff, and he worked the night shift. I wasn't sick at the time, but I know I felt real guilty if he didn't get sleep. I sure would like to have a hot meal even in a halfway clean house for my hubby now! Thank you for sharing that! Hi Broken_shell, thank you so much for the hugs, and the understanding! Hugs, hugs and more hugs back! I know what you mean about not appreciating just being able to do things. If you had told me before I got sick that I would appreciate the ability to do dishes, or laundry, I probably would have said yes I do appreciate it. But I don't think I truly would have understood. There is a saying "I cried because I had no shoes, until I met a man who had no feet." I don't know who wrote it, but it is so true....by the way I think maybe we should consider firewatchers advice, maybe the furniture needs that dust!!! Hi Bellajulz, I am so glad you posted.....thank you for telling me that sharing this made you feel better. I keep feeling like "I can't keep going there with all my problems!" So that makes me feel better that me sharing that helped you feel better. I feel better reading your post, and the others knowing that I am not alone!!! Sharing is a great thing! I hope you feel better, and have better days too!!! Hi Janie, That is a great idea! I do have a few rolling carts for laundry....I bought them to sort my laundry in my laundry room, but I didn't think of it for collecting the laundry with. I put hampers all around my house, but my husband always takes them to use when he does laundry, because he doesn't like to put it away, so he puts it in the hampers!! So all my dirty laundry ends up on the floor!!!! I have carpet in my house, but want to get wood floors throughout. But that at least would solve the issue of carrying it all back to the laundry room! Thanks so much for sharing that!! (hey maybe cobwebs protect paint huh?) Hi Carinara, Thats a great idea! I have 2 rolling office chairs, and my kids are always pushing themselves around on them...I will just have to steal them back from my kids!!! Thank you all so much for sharing! It helps to know that I am not alone. Maybe one day we can all do these things again!!!! I am hopeful anyways!! Take care everyone, and thank you so much! Hugs Suzy

Hi Ernie, thank you. I am glad I am not the only one to feel this way! I had to look up the word autonomous though! Hi Jennifer, thank you so much for the laugh! I think you are right though! I am leaving the dust just where it sits! take care, and thanks again, Suzy

WOO HOO!!! I am so happy to hear that Ernie!!! You deserve it!!!!! Thanks so much for sharing that exciting news with us!!!!! Hugs Suzy

Hi, I don't have a success story I am sorry to say, but I sure do empathise. Especially right now....I just got through posting about houscleaning....I know what you mean about the flu, and the cough....I have an ongoing cough I can't get rid of. Mines been going since October or November I think...possibly longer, I can't even remember anymore. Last night I had about a 2 hour period, where I felt really good. I mean so close to normal I was hanging on for all I was worth hoping it would last. It didn't. Maybe with more time. Who knows. I am so sorry for how you are feeling...I wish we could just take something or do something and have it end! I hope things turn around for you real soon. Hugs Suzy

Hi Everyone, I just really needed to get this off my chest before my head explodes!!! I am so frusterated right now! All I want is to get the house clean so I can enjoy this upcoming weekend, and I can't even get one room done. My family pitches in and does a lot, but never near the same as the way I used to keep house! Oh I have let a LOT of things go. I let my husband do the laundry which was unheard of before! (I know I should just be grateful to have a husband that does laundry!!) but right now I don't feel that way. I WANT TO DO IT! I used to love getting my house just the way I want it, and now I am happy if I can see the floor in all rooms. It is so depressing. I try really hard. I do. I crawled on the floor today trying to get piles of laundry together, and I was just so out of breath that even talking made me almost faint. I don't know how else I can do these things. I don't know a way to make it easier so I can. I don't know if it is the bending, or the standing, but I want to be able to conquour this battle. I know it seems like a stupid thing to worry about, but I just feel like such a nothing sometimes. I feel like if I can't even do this, then what am I? Who I am shouldn't be defined by this I know, but I am starting to wonder if I will ever be who I am again. Or if who I am is lost forever. I am sorry to be on my pitty potty, I guess I am just all out of positives for the day. Thanks for listening. I know everyone has their own things going on....just needed to get it out. Suzy

Hi, Just wanted to say welcome, though so sorry for what you have been through that brought you here. (especially the C section! OUCH! I hope you find all the help and support here that you could need, like I have. Sorry I don't have any good advice....just wanted to welcome you. Suzy