all4family

Hi, I don't mean to sound like a dumb bell, but I just want to make sure I am right here. O2 means oxygen, correct, and by desats you mean your oxygen level desaturating or dropping correct? Sorry not up on alll these things! If that is what it means then YES! I have been really worried, because many times when I have been having breathing problems my oxygen level is at 90-95. And the last time I was in the ER, (unfortunatly) The back of my bed was up, and my oxygen was at 90%. As the back of my bed was lowered it went up to 100%. I don't know what this means, but would really like to find out. Suzy

Hi One of my first symptoms was waking with numbness, and a high blood pressure of 186/112. Being a person who's top blood pressure was rarely over 100 this was extreme for me. Since that time I have bouts of very high blood pressure, and very low blood pressure. Neither feels too good! It is only when I am somewhere in between that I feel worth a darn. I did read an article somewhere that said that because the ANS is dysfunctioning this can cause extreme abnormalities in either direction. Suzy

Thank you Julie. Suzy

Hi, would someone please clarify for me does serum tryptase have anything to do with the Prostaglandin D2, or F2? Thanks Suzy

Hi, I have actually seen your videos on you-tube, and it was a consideration of mine. I was bitten by mosquitos 2 weeks before I became ill. And I get the fatigue thing. I fell asleep in a plate of sour cream yesterday! Thank you for sharing this with us. I may look into it. Suzy

Congratulations on your baby boy! Thank you so much for sharing your beautiful story! I'm so jealous! But you give me courage another child is possible for me!!!! I wish your beautiful new family all the best! (And I wish your husband a new arm!) Suzy

I am so sorry you are going through this. I had trouble with just a dicision on one doctor, so I can't imagine what you are going through. I wish I had some good advice, but to be quite honest you lost me!!! Maybe you should consider that medical degree idea!!! I would say if they both could be right, and you like some things about going to both of them can you still see them both, and possibly explore both posibilities? Maybe not just going down one path? I know what you mean about the testing to. It just becomes exhausting! If it makes you feel any better if you get called a hypochondriac enough you just learn to ignore it! I hope you find some answers, that will comfort you and reassure you, you re going in the right direction. Hugs Suzy

Thank you everyone who has answered the pole so far. It is very interesting to see. I can see the first several questions may not even have been needed! Melissa, Thanks for the advice. It's well taken. I am not really interested in a "medical" study. But more how this disease affects someone on a personal level. (I've had plenty of "medical" people to tell me how I feel!) And I did consider just the point you made that everyone's input would be of their view of their symptoms. But that was what I was more interested in. Their view. There are many tests to measure ones disease's and levels, and numbers, but that doesn't give us a bigger picture of how this is affecting ones life. And really if one person has say a severe headache, and the other has say a mild one, but they both view it as a five on a pain scale, does that change the pain to either person? And how do we measure ones pain anyways? The only real measure is by how they say they feel. I love when you go to the ER, and they ask you to rate your pain. What if I handle pain well? And get ignored? Or what if I don't and get emergency treatment I may not need. I guess what I am saying is that I have heard medical facts, and looked at symptoms lists for the last 5 years. But nothing makes me feel better then when I come on here and say "does anyone have this?" And I get "yes. I get it all the time. Don't you hate it?" Then I can just breath a sigh of relief, knowing I am not alone. And no medical study can give me that. That is why this sight is so valuable. And really many of us, if not most of us on here have suffered, waiting for some test to tell us what is wrong. Waiting for something to say we may get better. Waiting for some medical answer. I still hope I will find one. But in the meantime while we are waiting it is good to explore how it makes us feel. And more important to me, that I am not alone. Thank you so much by the way for saying you are impressed with how I broke things down. It is the first pole I did, and I was just happy to have gotten the technical stuff right. Suzy

Hi Toni, I don't blame you for being worried. It is hard not to be when you have strange tests, and no answers for them. When I first found out about one of the blood tests I had I looked up information on it, and was scared to death when all I found was information on paraneoplastic syndrome which has to do with cancer, and what I read was not encouraging. Basically what I read scared me because it is usually with lung cancer, and doesn't have a good prognosis. But I later found out that it can also happen with POTS. It still says on my paperwork that cancer is highly suspicious, but I am hoping those are just extra precautions that they are taking. If you need someone to talk to feel free to PM me. I know you probably have a lot going on right now, but if you need an outlet I'll listen. Please keep us posted. Hugs and love back, Suzy

Hi Everyone, After I got sick, I found I enjoyed expressing myself, and how having POTS makes me feel, with poems. I thought I would share one with you guys. I hope you like it. Suzy Feeling Pain I feel as though I have lived my life, for all the world to see. The Judgments and criticisms they?ve come so easily. But why can?t they see that this pain is real in me? Many live a sheltered life, seeing only their point of view. Never understanding, I have feelings too. They?ve never had to sacrifice, or walk alone in pain. I wonder if I will make it, or just hang my head in shame. Doing things I used to do, aren?t so easy anymore. Becoming more frustrated, I just hide behind my door. Watching others live a life, and wishing it could be me. Wishing my heart didn?t break quite so easily. I know that others suffer, I know that others hurt. You do not need to tell me, that I am not the worst. When someone pricks their finger, or slams it in a door, Do we stop to tell them that others have before? Just a measure of compassion, without measuring my pain. Will someone please just hear me, or will you leave me in the rain? By Suzy Mozelle

My mom started getting migrains after she had a brain anurism. Mine started after I started taking medications. I don't know if there is a relation. Kind of hope there isn't considering what she had that triggered hers! Suzy

Hi, I don't do many social events anymore, because of just the reason you said. Though you can't really avoid a funeral. I find if I start feeling bad, I go to the bathroom, (somewhere no one really wants to know what you were doing.) and I find a place to sit, and get comfortble, and lean forward for a bit, and just the time getting away from the sensory overload helps quite a bit. I hope you are feeling much better now. and Rachel I just wanted to say I love the picture you have for your posts. What a positive picture of a family with a mom in a wheelchair. It gives me more confidence!

Hi Ernie, Glad to hear it went well for you. I will be praying it works out good! Glad the doctor was so nice, and knowledgable.....To bad he is a pension doctor, and not taking regular patients! Suzy

Hi, For me I have antibodies to the ganglia, called ACHR.neural.gangle.AB. When I was reading my paper work it said that the antibodies were consistant with autoimmune dysautonomia. My understanding is that the antibodies are attacking me is what causes my pots. About 15% of the people with this antibody have POTS. Suzy

Hi Thankful, Thanks for sharing that! I was also 32 when my symptoms started. At first I remembered only the first night it started, and thought it was a fast onset. But when I first started trying to figure out what was wrong I remembered that I had gotten the flu shot about 6 months before that first night. After this I started having what I called heart spells. My heart would just feel like it was doing gymnastics in my chest. Then about 2 weeks before the first night, I was outside in the evening, and when I came in I had something like 15 mosquito bites all over me. (I later looked up the information, and that was the year that West Nile Virus was the biggest in our county. I think it was the next day I had an episode like side to side whiplash on my neck. For the next couple of weeks I had a few of the heart spells, and then I almost passed out 3 times. I was walking on a treadmill, and it has a heart rate monitor on it. I took my heart rate in my first 5 minutes of walking, and it was 190. Then when the first episode happened that I went to the ER for They said I had a slight fever, and my blood work showed I was fighting virus of some sort. But it never went away! My father also used to faint. The reason as far as we knew was attributed to low blood pressure. It seems like maybe multiple things may be at play in people with the genetics to predispose them. I always wonder if I had done just one thing different would I have ever had this happen?! But I guess I'll never know! Suzy

I know we all experience our symptoms quite differently and in many different patterns. I thought it would be interesting to see how different, or maybe even the same we all are. Ok...when I tried to vote in my own poll I fit more than one catagory ! So I have made them all multiple choice. You can check more then one if it applies to you.

Hi! I thought I was the only one! I had the flu just a while before Christmas this last year, and thought I was invincible. My pots symptoms seemed to go ALMOST completly away. So much so that I though I was better. I was running around with the flu doing yard work, and cleaning, and things I hadn't done in a while. My family thought I was nuts because I had the flu, and was doing so much. They didn't realize that compared to daily life with this the flu was a walk in the park. I did read something somewhere, though I can't remember where, where there were like 60 people in a hospital with an illness, it was something severe, and then they all contracted a second illness, and all the symptoms from the first illness seemed to go away. They were treated for the second illness, and recovered, and then all the symptoms from the first illness came back. And what they got from this is that maybe our body when faced with a second illness focuses on healing that illness first. Does this make any sense at all??? In another words it focuses on healing one thing at a time. My other thought is that it has something to do with autoimmunity. I don't know, but I can say I relate, and it has deffinatly happened to me. Suzy.

Here is a good site I looked at when my husband was quiting. (he doesn't have pots). http://whyquit.com/

I don't smoke, and never have, but I live at a high alttitude, and wonder if that in part makes my breathing symptoms worse. Suzy

Yes! I get extreme muscle tightness with the popping..Especially in my shoulders neck and chest...even my chest pops if you can believe that. Suzy

Hi, I'm not on beta blockers, but I feel bad most of the time. Weather my heart rate is high or low. I have had times when I felt like I was going to pass out, and checked my heart rate, and it was low. Real low. I think the H/R is only one measurable problem with this. And because we can measure it it seems like it is the cause for all of it. I think that the H/R is kind of like the fever you get when you have the flu. Just because you take tylenol doesn't make the flu go away. It may make you feel better for a time, and it will take your fever down somewhat, but when all is said and done the flu is still there, and it makes you feel lousy! Just a thought. Suzy

Hi Jan, Sorry to hear how crummy you are feeling. You already know my experienes with the meds are bad, but I have to tell you that as far as the beta blocker goes, I had that happen to me. It did drop my h/r REALLY low, especially when I was laying down, but I still had bouts of tachycardia. But what was very interesting was when I started taking it I had only had one episode of high blood pressure, my blood pressure actually wasn't usually high, in fact it was usually low. But when I was on the beta blocker it was always high. When I got off it went down. Now I do still get wild swings and all, but it goes back to normal. (for a few minutes anyways! ha ha!) That's me though, built backwards! I would be sure to tell your doctor about reducing it made your blood pressure better! Well if you can talk to him anyways! Sorry your having such a hard time getting with a doctor that can help and give you some answers. Take care, and get feeling better soon! Sorry I don't have better answers....just thought I could share that story. Hugs Suzy

Hi Nina, So sorry you are not feeling well. My mom and husband have both had the stomach flu that has been going around (I haven't got it knock on wood), they have been wiped out from it, and they don't have the added pleasure of having dysautonomia. (I do sarcasm too!!) My husband has hardly ate, and what he does eat doesn't stay with him for long. I hope you get feeling better real soon. Healing Hugs Suzy

Hi Jump, I actually fell out of the booth on my second pft. I started to tell the tech I was dizzy, then proceded to fall forward on her! luckily I didn't faint, though I came close. Both of my tests had something that was a little off on part of them, but I guess it wasn't a real worry for them. Though it doesn't make breathing any easier for me! My oxygen level at the hospital the last time I was there was 90% when I was sitting up. But when the top of my bed was lowered it went up to 100%! What this means I have no idea! I really hear you on the issue with talking! The last time I tried talking while standing for more then 3 minutes I hit the cement! I have trouble catching my breath too. I also felt really bad for quite some time after the tests. I wish I had the answer why, but my thought is that our ANS is not adjusting our heart rate when we stand, and exercise, and breathing deeply would normaly raise our heart rates, and activate our nervous system. Well if we are activating it it would tire us just like exercise. Ok..that's my thought on the matter...don't know if it is true, but it makes me feel a little better about it. Yes the nebulizer made me feel worse light headed, and I don't feel like it helped me. As a matter of fact I think it made no difference on the test before, and after I took it.

Hi Toni, Did your doctor say what it means at all? Or if you should have any more testing done? I have had quite a few odd blood tests come back abnormal. I don't think I have had that one done though. Wish I could help you. Take care. Hugs Suzy