all4family

ok. I just hung up with the Mayo Clinic. She doesn't know what pots is, or MCAD. I am starting to feel better, but am still having a bit of trouble breathing. I do notice that when I haven't ate at all (been having trouble with that lately) I get this very severe. I have taken a couple of bites of food, and it seems to be helping?! I do have the dye free allergy free liquid, and will probably take that. I really would go to ER if I thought they would do something other than make me cry, and try to make me look crazy. I am close to our hospital, so if I get worse we can go right in. I can't thank you all enough for caring so much. My husband is on standby, and can have me there faster than an ambulance can come. So could my coughing that I have had for the last 10 months or so be due to the MCAD? I keep thinking I have lung cancer that hasn't been seen on my hundred x-rays!!! When It gets bad like this it just can scare the pants off of me. I will take some of the benadryll, and I promise if that doesn't help I will go to the ER. Thank you all so very much. I don't know where I would be if I hadn't found this site. Oh...by the way doe anyone know if arsenic would cause this? Our water levels of arsenic are too high. Thanks. Suzy

Hi Julie, Thankyou. That helps so much. My only problem is my local ER won't treat me. Anything I say I have they will not listen to. They will leave me in the waiting room for hours, and when they do see me will not do anything but an EKG. I have been there enough times to know this. I could call the mayo where I have the positive test, and see what they tell me to do. I couldn't handle that long of a car ride right now though. Thank you for the prayers and hugs. I will call mayo, and see what they say. hugs Suzy

thank you firewatcher, I didn't think about that. I do have some benadryl on hand for "just in case", but it drives my blood pressure up. I could try a little. Thanks for the advice, and the anti-hug. you always make me laugh. this time I will have to laugh on the inside. hugs Suzy

Hi, I am having a horrible time. I have been having bad spells again. I can't breath at all. Well a little or else I'd be dead. my chest feels like a rock, I am unable to eat. I went outside to try the cool air, and couldn't get off the ground. I can breath a little better if I sit on my knees, and put my head on my hands. My coughing is severe, and I can't catch my breath in between. the extreme pain in my chest is just too much. Is this POTS? I feel bad enough, but this is just too much. I have been having more and more spells like this, and can't seem to stop them. Nothing I do is helping me breath. Any suggestions. Suzy

Future hope I certainly wasn't trying to say anything about your doctor in particular, I don't even know him. I did read the post, and took it to heart. I was just making a general statement about doctors in general. Sorry if it offended you. I have no desire to fight with anyone. As a matter of fact I just picked myself up off of our backyard, and was coming in to ask for some advice. I appreciate the advice you offered, and have had trouble with natural things as well as prescription. That is why when I tried it and got diareah I haven't tried it again since. There has to be a middle ground somewhere where you try something, maybe a smaller amount, and if you find it helps keep trying. But I cannot breath right now, and am going to have to be done here. Suzy

I too find that doctors will poo poo any thing natural that might help, and in the next breath offer double the normal dose of a prescription drug without blinking an eye. Firewatcher, I have had the alice in wonderland effect. That is when they said it must be migrains. I have had other strange visual effects too. but the Alice in wonderland one was weird. Suzy

I am so sorry for what your daughter and you are going through. It is so frusterating to have someone be so sick, and not be able to get the appropriate care due to insurance hoops. I wish I knew a way to help. You and your daughter are in my prayers, and thoughts. Suzy

Hi Amber, yes that is definatly something that I feel I have a problem with. I have a very hard time with chemicals. Even natural stuff. I did test positve for something to do with the mast cells, but don't know exactly what that means yet. I called for my paperwork, and am waiting for the release in the mail. Thank you for mentioning that. I knew the soap was really making me sick when I put it on the front porch, and made him change soaps! the silly things we do to feel better! Hi Lizzegrl, That is very reassuring to know that an expert in the matter doesn't think that it is due to deconditioning. I know that people want to help, but it is frusterating when you feel bad enough about not being able to be who you used to, without someone saying it's so easy to fix. Because believe me I have tried. I can empathize with you on going from feeling ok, to drop on the floor exhaustion. Thanks for sharing the information. Hi Maxine, I agree with you totally. And really it doesn't make any sense. Like you said you were very active. I am glad you crossed that doctor off your list. It isn't worth your time to spend trying to teach someone what you already know. (and the worse part is that you have to pay them while you educate them.) If it were so easy as reconditioning I am sure that everyone on here would have already discovered that. Look at everyone jump on the turmeric. I just don't think there is much we are not willing to do to overcome this. I am sorry about the deconditioning with the EDS. It just seems to pile up! Suzy

Hi Green, I had a test called ACHR.neurl.gangl.AB. I don't think this is a real common test, it is part of a paraneoplastic screen. It shows antibodies to the ganglia, or in the ganglia, I really don't know. The reason for the antibodies CAN be many different things. When the doctor first told me I was positive she said it was a neurological autoimmune disease. I had this test before I had the TTT. The bad part about this test is that paraneoplastic syndrome is a syndrome caused by cancer cells, and tumors. BUT you can have a positive test for this if you just have POTS, and no cancer. I had it done at the Mayo clinic. I am not sure who else does it, and do not know how you would go about getting tested for it. I never would have been diagnosed with POTS if I hadn't had this test. Suzy

Hi AJW, Wow, what a day you had. But it sounds like you will get a lot of answers, and if nothing else understanding of what is happening. That is very interesting that they did a sitting one. I get the same problems sitting sometimes as I do standing. As a matter of fact if I sit still to long I get just as bad as if I stand still too long. I have more than once now tried sitting to feel better, only to end up going down anyway. I would be very interested to hear more about the sitting test, and how it turns out for you. I hope you get good answers. Thank you for sharing your experience. Suzy

Hi Yogini, that is a very good point. Ithink when someone asks me if I exercise next time I will start with that. "It is a neurological disorder". And yes my ups and downs make no sense whatsoever.When I was always being told that it was anxiety I would look for "things" that were causing me to be anxious.. One morning I decided it was the smell of my husbands soap! yep...makes no sense. Thanks. Hi tearose, that is a wonderful theory and visual aid. And soooooo much of what I feel like much of the time. A paper towel ran through water! That will help me, because I am becoming increasingly frusterated that I can't "fix" this. So I take it out on my body trying to "make" it do what it used to. And all the offers of advice on deconditioning is just making me fight harder trying to recondition. But that is so true, because after I do a lot, I always end up in bed. a LOT!Thanks for the visual. I will also use this when trying to explain. At least to those who will listen! Hi Pat 57,I have read that about the CFS. And it would make sense. After a body goes so hard for so long it gets tired. I haven't gotten nearly enough sleep recently because my ear hurts, and is stopping me from sleeping. Naps are my friend right now. Thanks. Hi sara, how frusterating doctors can be when they don't listen to us. Yet they think we should listen to them. It is kind of hard when they don't know the whole picture because they haven't been listening. When I started beta blockers for some severe b/p spikes well before I knew about pots, I started having even more disruptive problems. And the mane one was breathing issues. Up untill that point I hadn't had any trouble breathing. So it is good that you were cautious. I think it is easier for a doctor with a dificult patient to blame the patient. That takes the pressure off of them. Sorry for your experience with that. And thanks for sharing. Suzy

Hi Potsgirl, It's good to meet someone in the neighborhood! If I head that way I will let you know...I usually go there to visit my inlaws. We originally came from Tucson. Considering moving back too. Pm me if you want. We may be the only ones here in the west. Suzy

Hi Michele, I just wanted to say welcome, and sorry for what you have been through. I know how it feels going to the ER and doctors for years, and only to be told it's anxiety. When you know it is not. I was the first one to ask about anxiety to my doctors, because I was more terrified it wasn't, and wanted an easy answer and to walk away. I was also given medication for anxiety, but it only made matters worse for me. I also understand your hesitation to believe that POTS could be a "simple answer". It is very hard to believe you feel that sick, and aren't dying. And worse that it may be permantant. But there is nothing simple about POTS. All the doctors I have talked to since diagnoses didn't even know what it is. And even the ones who do don't usually know what to do with it. So many strange symptoms seems to be the "norm" for pots, and considering all the body is affected by the nervous system it makes sense. I know you will find lots of answers, and support on this site. I wish you healing, and understanding. Suzy

Hi Maxine, I don't have any help, or advice, just wanted to say (((((((((((((HUGS))))))))))))))) and I am so sorry for all you are going through. How are you holding up? Please take care of yourself, and be easy on yourself right now. Oh...I get the foggy vision too. It makes me crazy. You have delt with so much, and done it with such grace. hugs Suzy

Hi Jennifer, Hey thats the best spent 1,000 bucks that I never had!!!!!

Hi Thankful, what you said makes a really good point. You are not in as good of shape as you were a few years ago BEFORE POTS. It would seem to me that more the opposite of deconditioning causes POTS is true. It seems to me that more of BECAUSE we are unable to do the things we did before there is some deconditioning involved. A prime example of someone who is anything but deconditioned is Greg the yellow wiggle. He did dancing and singing everyday for a living, and had to stop because of Orthostatic Intolerance. Hi Ernie, no. I can't believe that! I am sorry that he wrote that in his report. Hi Nina, that is good to know. Seems many here were all in somewhat good to great condition. Now I wonder how to get others to understand this. I shouldn't care, but when faced with the question when you can't do something it is hard to answer without someone "solving" it for me. Then I have to listen and act like they are right, and why didn't I think of that. Suzy

Hi Ernie, that was me too. Not the dancing, but I was very active, and the next day was sick. Did your doctor actually tell you you deconditioned overnight? That's Priceless! Hi Jennifer, Thank you, so WHEN DO I GET THE MONEY? At least there are some people out there who are getting this. (other than us) I hope you get some straight answers soon, and share them with us. Would be nice just to jog our way out of this wouldn't it? Paying through the ANS right now! All to accomplish what someone else thought I should be able to! Keep on Surfin! (I love your analogy!) Suzy

Hi everyone, I just want to know what everyone here thinks. I have heard a lot of people here mention that their POTS is frequently blamed at least in part on deconditioning. After explaining to someone once again how tired I am they told me I needed to get some exercise. If you don't do anything you will get deconditioned. And this isn't the first time I have heard this. The thing is, is I do, do things. I do as much as I can take, and not only that but here is the more interesting thing. I have "spells" that are bad, but I also have "spells" that are good. During a good spell I still feel bad, but am ABLE to overcome it, and do a lot more. The last time I had one of these "good spells was about a month before Christmas. And I always think the same thing when it happens. "Maybe that was it, and I am going to get better now. So the last time this happened was no different. I woke up one day and felt good. I decided to pick up some things on our porch (which was covered in things and a mess.) I ended up spending the whole day cleaning the porch, then started on the yard. Over a 2 week period I had done the porch, the yard, 2 overloaded sheds, some landscaping, some remodeling, shampooed carpets, And was working on getting all the trash out in our trash. Then just as suddenly as I had felt good, it came back. I can even remember the exact moment. I was bent over scooping tree trimmings into a shovel, and when I stood up everything started spinning. I got the distant dazed feeling, and began to vomitt. I remember my husband coming back and asking me what was wrong, and said I should go lay down. Now this is my question, does anyone else experience times when they are better and worse than others, that has nothing to do with something they are doing? I would think if this was a matter of deconditioning I would not have "suddenly" reconditioned one morning, and went crazy. No more than in the middle of an activity I would "suddenly" get unconditioned. And I should mention on the days I did the work I literally worked from the time the sun came up until well after it had went down. (I was overly excited about feeling good.) So there was a drastic difference in what I could accomplish, and I had done nothing different. I am all for getting "reconditioned", and do try. But I just tried walking a short distance the other night. While I felt ok while walking when I stopped it was a different story. What is everyones here's experience with deconditioning and reconditioning? What do you all think?

I have a hard time with large energy emotions like laughing. Even if I think something is very funny it's as if I can't breath when I try to laugh, or cry, and I especially don't yell. It is deffinatly due to the physical strain it causes me, and not due to emotion fluctuations. I still feel the things that I feel, I just can't express them without becoming short of breath. This was very frusterating to me also. Is there a way to be funny that doesn't make you feel this way? I have found that I enjoy listening to people laugh at me, and when someone asks why I'm not laughing I will just say I am on the inside, with a little grin. This seems to make them happy, and then we can all laugh in our own way. Suzy

Hi, I share the medication intolerance with you. Before I was diagnosed I spent a year becoming sicker and sicker with each medicine I tried. After 2 severe bouts with the same problems, and both related to medications it was certain that my sensitivities to these were at least some of my problem. I hope this helps you. Suzy

Hi Julie, My first symptom I ever experienced was one sided numbness, accompanied by high blood pressure. I had an MRI done of my brain to rule out stroke. I have since had a lot of one sided symptoms. I always have more trouble with my left side. And I get the left sided heaviness. I can't say that it has ever made me fall over, but it definatly has made walking dificult for me. I wish I could tell you I knew why I had this, but I don't. I am glad you have your doctor working with you on this, and I hope you find an answer to this soon. Suzy

My mom has been taking it,(she doesn't have pots) and she noticed increased energy. I took it one time, and the swelling in my ear went down, but I got diarrhea real bad, so I haven't taken it again yet. I plan to try again soon though, and see if that is what caused the diarrhea. Suzy

Hi, I don't know about "wise" words, but I do have some words to share with you. I almost fell over when I read your post, because I used to do that with the shoes also. A big part for me was I didn't know what was causing my horrible symptoms, so I felt certain that one day this "thing" that was making me sick would end up being really urgent. (There was even a point my symptoms were so bad that I slept in full clothes, and shoes.) Eventually I got used to the fact that no matter how many times these bad things happened to me, or how many times I fainted, I always ended up being alive in the end. (even if still feeling bad) So for me it turned out to be something I had to learn as I went. Take comfort in the fact that you know you have this, and that it does cause these problems. One thing I used to do that helped me a lot was to write about the symptoms I was having, and the severity. (for some this might just bring there attention to it more, so do what is comfortable for you.) Then each time my symptoms became severe I could look at that, and take comfort in knowing that it had happened before, and it turned out ok. Also just the act of writing down how I was feeling relieved some of the fear of how I felt. I am now to the point that I am more worried about how people around me will act then the symptoms themselves. (but it took me a long time to get here.) The diagnoses helped with this, as I read about the disease I knew others felt these symptoms. That helped a lot. I hope you find what works for you, and makes you feel safe. Suzy

I don't have any advice, I just wanted to say I am so sorry that this happened to you. And even more so that your husband thought it was anxiety. I know that decision to go to the ER is such a hard one. Especially when feeling so bad. I can't tell you how many times I have sat in the parking lot at the hospital waiting to feel better and trying to decide if I should go in. I hope you are feeling better now. Take care, and take it easy on yourself. Healing hugs Suzy

Hi Julie, I don't mind answering questions at all. I just appreciate the help you are giving me. Going from thinking everything was in my head (although I didn't believe it in my heart) to everything is wrong with your blood, practically overnight has left me a lot of questions. Ok...I was going to answer here to make it easier, but I was writing a novel, and thought it would be to long, so I will PM you. Hugs Suzy