all4family

Bellajulz, I am so happy to hear you are doing so well. I really hope that you enjoy this time. I have also noticed that when I am at the hospital, and have oxygen that I do better. Of course I asked the doctor about it, and I was told it had to do with thinking it would help me! Oh well. I am so happy it is helping you, and please let us know if it continues to be a big help. I'll be saying prayers of thanks for you. Suzy

alicia, I am so sorry I didn't see this sooner. Yes I have problems with vitamins, and chemicals. Basicly if it has a smell a color, or is a vitamin I am careful. I never had anything as serious as a sezire from it though. (Although I was diagnosed with seizures because of my EEG's.)That must have been awful. That is why I won't take the very large dose of vitamin D they gave me. 50,000 ius. What if IT doesn't metabolise like the drugs?! Knowing doesn't change a lot but makes you be more careful, and as long as you know there are others out there that can't handle the meds also then hopefully that will help you with your decision making. My hope is that people will listen to themselves first. I listened to the doctor first who said that my problems weren't coming from the meds, so I kept taking them until I thought I was going to die. Take care, and know that you are not alone. Hugs Suzy

Ramakentesh, I definatly would have eyelid lag then. I have pictures of me looking drunk, and I was always like that because I couldn't get my eyes open very far. I don't have it as bad now, but I do get it when feeling real bad, like now. I will have to look into that with the Graves disease. I think that my doctor ruled it out, but you never can tell. I also have had a off test with maybe it was cortisol, but that isn't the same. Thank you for the information I will look further into it. Suzy

May I come to your pitty party with you because man it sounds like you need one. What a terrible thing that doctor did, and good for you for turning him in. But the good thing is that he has you, and that is the best thing that could happen to him. I can't tell you how many pitty party's I have thrown for myself. And there are always good people here to come to my party's. I don't know how your son usually does, but the first thing I learned was that this disease waxes and wanes. Still everytime I am feeling better I think that's it, It was just temporary, and I am all better. Then I hit a rough patch, and am back where I started. I do understand though that there are quite a few lucky people out there that get better. So I am not giving up, and I hope you won't either. That and I know at camp it is really easy to catch a virus, so it may not be POTS at all bringing him down right now. I will be thinking of you and your son, and praying for you. take care, Hugs Suzy

Yay Jana!!! That is good news on both parts!!! I am so happy for you. Now if you could just feel good for it. Sorry... Hugs Suzy

Hi Jana, So sorry you are experiencing this. I used to get them when I was on, and then withdrawling off of xanax. It was very frightening for me, because it made me feel like my brain was shutting down. I had a group I was on that was on and withdrawling off of benzo's also, and this was quite common with that. I don't know what if any meds you are on, but it can be a side effect. If you want to talk to me more about it feel free to e-mail me. I am just laying here! I hope this gets better for you. ((((Hugs)))) and I hope you feel better. Suzy

Hi Everyone, what a great group you all are. It deffinatly sounds like I am not alone with the heavy thing. That is so reasurring to me. I just woke up for my second time today, and it's almost 1 in the afternoon!! I feel a little better after all that sleep. Jan, thanks so much for the hugs. Yes I do believe with all the drugs I took in the beginning that I am toxic. I am sure there are a lot of things that my body just doesn't process. That is why I get so sick around certain things. I wish I could go to a doctor like that, but I don't think I could afford to. Like you I have other doctors, and co-pays etc. that I have to deal with. I have a juicer, and have read a lot on juice detoxing, and might (if I can ever get my kitchen back in one piece.) give that a shot. I also worry about the "natural" things, because I had a really bad reaction to some holistic thing a holistic doctor gave me. What was the name of the thing you did? I will look it up again. I didn't get very far the first time. Thank you, and take care. bjt22, Sorry you are also experiencing this. I have to ask who carries your purse for you? My husband will for me.....gotta love him!!! It is so hard to carry anything, when you can't even carry yourself! And you know what ever happened to the messy look for hair?? I sure am trying to bring it back!! Thank you for sharing that with me. Ramakentesh, I had something like I want to say nystagmis, but I don't think that is right on my last neuro exam. No one has ever mentioned that to me, although I have a lot of eye troubles. Sometimes my eyes just kind of don't want to open very wide. Is that what you mean by that??? Jana, that is a very good description of how it feels like walking through water. I feel like I will just smack the ground at any second. And I hate things moving besides me. Wheather something is moving besides me or the motion from me moving. Thanks for the support. Janie, thank you. You are so sweet. I sure am longing for the days just about 2 weeks ago when I thought I was getting better. I wonder if an abdominal binder would help me. When I stand I feel like all my energy is in the middle staying balanced, and when I walk it takes a lot of energy. I at first didn't think I experienced pooling, because I didn't know what it looked like, but as I have read on here I realise I pool a lot. And may I say mmmmmmm....I love chinese food! My favorite is mongolian beef. But my hubby doesn't like chinese so we rarely eat it. That and I don't eat beef anymore.... but if I did I'd order it delivered!! You made me smile with the chin up on the inside. I've got it up with friends like you! Tearose, what would we do without our angels?!! That is such a sweet thought! Everytime I get out of bed now I'm going to have to thank the angels for helping me. Sorry you experience this too. Take care. Pat57, that is very interesting, because I get such wild fluctuations in my b/p. Sometimes it is really high, and sometimes it is really low. But I tried an experiment at home trying to see the difference I got between standing, and sitting, or laying, and when I took it laying down it was in a normal to high range, and when I stood up I couldn't get a reading after 10 try's I got 65/37 I think it was, so I thought (this was before I knew about POTS, I was just trying to find out the differnce, because I thought that standing was a problem for me.) No that can't be right, so I took it again, and it was almost the same, then I couldn't take it anymore. Then I would get a really high one. But for the most part standing I can get no b/p, and the times that I have fainted the medics can't get one either, then when they can it is high. OK. I just rambled a bunch, and I am so sorry. I tend to think outloud when I can think. Anyways thank you for telling me that, and if anyone knows why this is please let me know. Thank you all for your support. I don't know what I would do without this group. It has made dealing with this not a living nightmare. And the people on this group are truly compasionate. You all are the angels! Thank you. Thank you! Hugs Suzy

Yes there are 2 parts to the gene, and I am only missing one part (thankfully) or I would probably not have made it through all the meds I took. I really relate to you with the pain pills. I tried telling drs that this just makes things worse for me, and they say that's not possible. They are designed to get rid of pain ! The pain I suffered while on drugs was unbearable, and the worse part was I just wanted to be able to take something for it, but I couldn't. I have the same fear of pain pills, and really any other at this point. I hope you can find a way to get tested. It was really helpful to me. Suzy

Now Jennifer you have watched the 1000 dollar question! I don't know how to find a doctor you can trust. And I would have some serious concerns over a doctor who threatens not to be your doctor because you are going to others. I mean please did you say till death do you part? What is his insecurity? I was told if I didn't take the pills that I was being prescibed then a doctor would drop me. I went ahead and dropped him! I am sorry you are going through this, and I don't envy you. Making decisions for our health is difficult enough without DRS who can't agree. Good luck, and I hope you make a decision that you are comfortable with. Hugs Suzy

The PAF sounds way too much like me. Plus I have the very erradic blood pressure. Suzy

Thank you so much Babette, you are such a kind person. I am vitamin D deffecient to the degree that I have secondary hypoparathyroidism. I was taking over the counter pills, because they gave me 50,000 ius, and I just didn't want to have a problem. I also got a medical tanning bed, that is used for psoriasis and such. That is really encouraging that this has helped you. Maybe I can increase my dose. Thank you for the prayers, you are in mine too. Take care, Suzy

Hi AJW, Yes! I totally get the getting as low as you can! I will be on the bed, and just kind of roll to the floor, and when I ride in a car like this I absolutly have to lay down. I can't lift my head for very long. In fact as I am typing now the only way I am doing it is with my head down, and I ocassionally lift it to make sure my hands are still in the right place. It's a good thing I have a laptop. The pain just gets to be unbearable. I have been trying to sleep more, because I figure sleep will help my muscles heal, but the pain is really hard to fall asleep through. I tried taking a hot bath, but couldn't get comfortable in the tub. I haven't combed my hair in 3 days, and I don't even care. I will pay my kids to do it tonight, unless my husband gets back early enough. Thank you for sharing that. It seems we have just so many symptoms. That is very reassuring to know I am not alone. Suzy

Hi Babette, I don't really know a lot on this subject, but was wondering if you had already read some of the information on this site on the different types of the dysautonamia's? I will be thinking of you, and hope that your test on Friday goes really good, and you get some good answers. Take care, and try not to worry too much. Suzy

Please forgive me if it has been asked before. I'm just in so much pain, that I can barely stand up. I feel like I weigh as much as an elephant, even though my weight is falling off of me right now. I am thinking that this severe muscle pain is what is causing the shortness of breath I feel, and the chest pain. I feel like I have been carrying a house on my back for a week. It's everywhere, in my legs, hips, arms, chest, neck, you get the idea I'm sure. I've had this many times before, in fact it has laid me up in bed for a long time more then once. I am just wondering if this is a POTS thing? When I walk from the bed to the bathroom It takes me a long time, and It is really hard getting up and down. Any advice on what to do for someone who pills make matters worse? I am afraid I am headed for a long stretch of being laid up . Thank you all in advance. Suzy

Hey Maxine, Sounds like we could swap out horror stories. Unfortunatly when I complained, they got even with me. Have a good day. Suzy

Ok, I found it in an e-mail I had to someone. it is the cyp2d6 gene. It is genetic testing, and takes a while. There are more then one they can test you for. I am supposed to go back, and be tested for the new one that just came out. It is very new, so a lot of Drs. may not know about it. I had it done at Mayo Clinic. If you pull that gene up on google you will get some information on it though. I hope this helps.

Hi Tammy, Yes it is just a simple blood test, and I can't for the life of me think of the name of it. Which I am supposed to know if I need treatment oops. I will find it in the next hour, and let you know. It was very helpful for me to know this, so if I have to take something they can give me a smaller dose. It also helped me so much because I had been told that I was "scared" of taking medicine. If I was I never would have had to withdrawl off of them. But this just told me after all I had been through that I was right. I will find the name here in just a minute. Suzy

Hi Broken_shell, Sorry about the constant bleeding. Youch! I tried birth control pills before I was diagnosed with POTS some years ago. I was as is usual for me, but I just didn't know it yet, unable to tollerate them. I gained 30 pounds the first month on them, and I started getting really bad headaches. I also became unbearably aggitable. That being said I wasn't sick at the time. Someone once told me that you have to weigh the side effects with the benefits. Is the pill you are taking sustaining your life? Is it making it better? Is the side effects worth the possible help it can bring? I hope you find an answer that will help you. I know the stress of trying to find a medication to help. I hope you will find an answer that makes you comfortable. Suzy

I am so glad you got some answers, and some good news! I hope the kidney problem is mild, and easily treated. Take care. Suzy

I know a lot of people with dysautonomia have troube taking medications, but I just don't tollerate them period. I was my sickest when I was trying different ones, then I was able to "tollerate" xanax, but I believe that the only reason I could was that in the beginning like you said I wasn't taking it all the time, and I took 1/8 th of a pill, which was already the smallest dose. I ended up really sick on this drug as well. Finally years after I got off of all the drugs I found out why. I am lacking a gene that metabolises drugs. The doctor told me that certainly all the problems I had with the drugs were due to this, and not "in my head" like I had been told. He told me what would be a normal dose for others, would be an overdose for me. And that the drug builds up in your system, so you might be able to handle it the first or second dose, but the effects build up. I don't have my medical paperwork with me right now, but when I do I will tell you the name of the gene. There are several you can be tested for if you want to find out. Have you told your doctor about this trouble? Please, please do not blame yourself. Do not think it is because of your attitude about it. If it were you wouldn't have tried taking them to begin with. I did this to myself, the blaming thing, and I just ended up really sick. You know your body best. Suzy

I am gad that others spoke up and told there nightmare stories. I have too much fear to, as having a psychiatric diagnoses of anxiety made Drs. treat me as if I had no rights. This is why I fear my local medical care. They think they can do anything they want to me. The things that happened to me were unethical, and illegal, but they backed each other up. My only crime was seeking medical help. All of what happened to me was based on how many times I kept coming to the hospital, or doctors office. Not on my behavoir, which was just that of a woman who was sick, and trying to get help, but the psychiatric drugs made me sicker, and by the time I realised that was the problem, then I had to get a doctor to understand that. Vemee, what a horribe story. I understand where you are coming from. I am so sorry that they did that to you. Halodol is banned in I think Europe. Maxine, I am sooooooo glad you didn't take the resperidol. When the doctors decided that I couldn't take another psychiatric drug they had pushed on me they gave me that which one of the side effects is heart racing, and others. Every time I took it (which was thankfully only 3) my heart did like a slam to a stop, then took off to beat at 170 for over an hour, and this was laying down. Even though I went to the ER for this (which I was told to stay home and deal with these symptoms) and said that I thought it was "one" of the new meds they had given me they said no. I went ahead and tried it 2 more times, with the same reaction both times, only I sat home, and let it happen. Then I told them that I would not take them anymore. But unfortunatly that didn't stop them from giving me more, and being that I wanted to feel better, and thought maybe I was just "anxious" (more like hoped I knew there was something really wrong) so I would try them. It doesn't help that I was being threatened into taking them. It is sad to me, because I have to hold so much of this stuff in, and cannot really talk to anyone about it. Like Maxine said with the lady stocking her on here. Suzy

I'm already praying for you. Sorry that the lady doing the ct didn't help you up. That was very thoughtless of her. Take care, and be sure to let us know as soon as you know the results. Hugs Suzy

Yes the news report I read said it includes sugar cookies. I would call the Subway you ate at just in case. I think that fact that they were cooked and not the raw dough makes a difference. But they were saying not to cook them anyways. I hope you get feeling better soon. Suzy

Hi Jump, I just wanted to tell you that I had the hypochondria about this one also. I think one of the tough things about this disease is that it mimics so many others that are very serious. I have had the constant chest pain, and shortness of breath also. (I've decided it was a pulmonary embolism this time! ) I think what flop says is very true if you took the diet drug, then had the echo 2 years later that would give me a lot of reasurance. If it is making you worry though I think I would definatly try and get another echo done. Let them know you took the diet pills, and are concerned due to your symptoms. Don't make yourself sick over this. Just find out. I made mysef crazy worrying about it. POTS really gives us a lot of symptoms, and if your worried it is something else rule it out, so you don't have to worry. Which is worse asking for a test that comes out negative, or worrying about something and causing yourself unneeded stress. Take care, and try not to worry. Suzy

Oh Janie, I am so sorry it made you feel worse. The last thing you need is a headache. I remember that is one of the reasons I quit going. That and the money. When my neck cracked yesterday it was because it was really stiff, and I pushed on the side of my chin just a bit, and it cracked, and gave me a huge amount of relief. But now tonight I am getting the chest pain back. I am hoping it is just temporary, and maybe it is just healing. I feel so bad for you, and wish I could do something to help. It is such a sad illness, it makes us willing to try anything, sometimes even more then once just in hopes of feeling better. I hope your headache goes away quickly. (and your chest heavyness.) Please let me know how you are doing if you can. Take care. (((((HUG))))) AJW, I do have sleep apnea, but it is mild, and the breathing improves for me when I lay down. I also have had 2 pulmonary function tests, and neither doctor said I have asthma. I am sure there are some others who should have these things checked here, so thank you for mentioning it. Take care. Suzy