purplefocus

Hey everybody, I finally kept my appt. with the MVP and Dyautonomia clinic my doctor had referred me to. I think I had cancelled 3 times. I did find out some things that were helpful but not really any more information that we already have here. Here is what they did.........I had to answer an 164 questionaire. It ranged from parents history to if you had been sexually abused................from a to z. I couldn't see how alot of this would help but I did it anyway. The had informed me to expect to be there 2 to 4 hours. Let me tell you what they did. First they did an echocardiagram....then another tilt table test (it was nothing like the previous one I had,I did lay on the tilt table but this one lasted maybe 3 minutes, she stood me up checked my blood pressure, laid me down, checked my blood pressure and then I got up) Then I had to get on the tread mill and put the breathing piece in my mouth while I had a nose clip on and was hooked up to several wires. Guys, I knew I had deconditioned over the past year and half but I had no clue to how much............my O2 sats dropped down to 52, you like this to be 100. Well after I finally got off that contraption and realized I was not gonna die then I had to go talk to the doctor with all my new found results. I do have to admit it was nice to talk to someone that when she heard the word dysautonomia she didn't say "What?". She reviewed the medication I was on and adjusted them alittle, nothing new just a little adjusting. Told me how important it was to get off my butt and start moving and gave me quiet a strick little regimen to get started reconditioning myself. Something I think I actually can do. We talked about the symptoms I was having and then I left. I was a little disappointed. I guess I went in hoping for a miracle drug. I think the only thing I got from my visit was a pep talk to exercise. Oh well guys I just wanted to share this with ya. Oh yea, she wants to see my in 6 weeks to see how I am doing? Don't know if I will go or not . Paige

Hi Gena, Don't everythink your topics are lames. I am sure you can find someone here who has or is going thru the same thing. You aren't alone at being stressed because of trying to get to somewhere on time. This happens to me pretty much everytime. I have cancelled so much stuff just because I didn't want to deal with everything that went alone with getting there. I am trying to stop doing that and make myself. I always try to start hours prior to being there getting ready but alot of the time it seems I just don't have the energy. My husband helps tremendously with making sure I get to where I need to be, I guess you can say he is my cheerleader. Just wanted you to know you aren't alone. Paige

That is wonderful advice you recieved. I am not coming from a knowledge of medical experience but my personal experience. I was having chronic pain in my legs, from my knees down. My legs were very restless and the pain I had I could feel deep inside but of course there was no obvious reasons. My doctor sent me to have a test done on my legs for nerve damage. They inserted very tiny needles into my legs and adjusted a machine to give me jolts. I could not tolerate the test so it was not finished. My doctor apparently having no written reasons to give me neurotin talked with me and we both agreed that this would be the best thing to try. I did not want Lortab or anything like that. I don't remember exactly how long it took, but I got where I was down to only having a very small ache. It was wonderful. A few months ago some of the harder pain was coming back and we increased my dose just a little and it has made a complete difference. If this is the type of pain you have I really hope your doctor will give you this drug. I have suffered no type of side effects from it. Best wishes. Paige

Kristen, I am so sorry you are going thru this. I know all too well what you are experiecing. I have a 3 year old at home with me by myself 15 hours a day. What we do when I have "bad days" are stay in his room. I bring snacks and drinks, the cordless phone and whatever else we need and I lock his door. That way he has all his toys and tv with all his videos. I know this might not be the best thing but it is better than him running around the house if I faint. I too understand about your husband, mine does the same thing. Sometimes he doesn't realize just how debilitating this illness is. I put up a front too often, do you do that? I need to let him see how sick I do feel at time instead of pushing myself too hard which usually leads to a crash. The only advice I have for your crash is to drink drink drink. I find that the more hydrated I stay the better I feel. I wish you the best of luck. I wished I had more advice, just know you aren't alone. Paige

Mary, I am so sorry you are going thru all of this. POTS is enough without all the other things you have stressing you out. I agree with the advice in the other post. I just wanted to add that you aren't alone. We do understand your pain. Vent away. I wish I had other ways of helping. Paige

Hi, I am so sorry that your fiance and family doesn't understand. You really need a support system. It sounds like to me that you were under the impression that your POTS was gone forever and since you felt that way the attack made you angry. Just my thought here. As far as the lying down thing. With me, it doesn't matter what position I am in. Hopefully when you get back on your feet that you can go another 5 years or longer without another episode or maybe even forever. Best of wishes. Paige

Julie, Just don't give up. The SSDI is a very hard road to travel but you can handle all the obstacles that are thrown at you. I went thru it just like a lot of others. I also had to see their doctor. It does seem like they are there to go against you but most of them end up seeing that you do have a real problem. Good luck and stay positive. Paige

I can spend all day watching the station Lifetime for Women.........it has movies after movies that I enjoy but can't recall names at this time. Also: Shrek 1 and Shrek 2 The Cinderella Story.............I think that's the name, brain fog Elf Save the Last Dance............my personal favorite Paige

Thank you guys for responding. I do have a plan for when I am feeling my worst. My son and I refer to it as the safe zone. We go into his room and I lock the door, I have the cordless phone, a snack and drink for him and he has all his toys. I lay down on his bed. Usually I am not out no longer than a couple of minutes. He has never seemed to suffer any ill effects from this. I know that you all probably do as I do. This illness has interrupted my life in so many ways that I have tried to do so many other things to compensate. I just don't understand why others want to keep knocking you down. Paige

Hey guy, I know I haven't posted much lately but I have been feeling poorly. It seems like I just can't get back to any type of normalcy. I do have an appt soon with a new doctor. What I want to ask is this.............My exhusband has told me I would be getting orders to come to court soon. He says that he is gonna to make sure the kids are taken away from me because of me passing out. Well ok first of all, he has not gotten over being angry since the divorce, which has been three years, he is still very bitter. He has only supervised visits every other weekend. I know that no judge will give him the kids because of his history. My children are 3 and 13. It is the 3 year old that he wants. This is actually making my symptoms worse. Has anyone got suggestions? Thanks Paige

Hey you guys, this is Paige (purplefocus). You all made me feel so good. I am hanging in there. I am feeling exhausted all the time and trying to get a little christmas stuff in here and there. I do come on and see how everyone is but that is about as far as I get. I hope everyone is ok and staying warm. Thanks for being concerned. I will type more later. Paige

Julie, I hope you are feeling better. About the forgetting, I know its scary. I have done that also. Stay positive about the SSDI, it is a hard battle but like someone else said in the end it makes it all alrights. You have the right to vent...........so vent away. We all do it here and there and that is one thing we are here for. I am sorry you are having so many problems at one time though, I have a big problem with being overwhelmed by just too many dirty dishes in the sink so I understand. Don't you just wish people around you could really understand what is going on inside. I don't wish this on anyone but I do wish sometimes some of the folks around me could be in my shoes just for a few hours and then they would understand so much better. Oooops sorry I got off...............hugs and good wishes coming your way. Paige

I could understand if the lawyer had said something but not the judge. That is horrible. I have primary custody of my children and I am terrified that my ex will try to get full custody of them. Of course if any judge lets him then he is as bad as my ex ( he is just a plain mean man). He currently has supervised visits. I keep as much information as I can about my illness from my ex's and unfortunately I have told my children there is no need to discuss my health with any of them. I do know that some judges are biased and it doesn't matter. His statement was so uncalled for and stero typed. I am sorry the world is filled with such idiots. Sorry for the vent but it makes me mad. Paige

JLB, I am so sorry that you are having a rough time. I wished I could be your support there. I am sending good thoughts to you. This will pass but I know it doesn't help right now. I don't have any other advice that the others haven't already stated. Lots of hugs sent to you. Paige

That is GREAT news. I am very happy for you. Happy Birthday. Wow, a new child, wonderful wonderful news. Paige

Thank you everybody for your concerns. No I haven't been to a doctor yet. The reason is because as most of you know they think we are crazy so I am just waiting to go to the one that my old doctor referred me to. The test they did at the ER was EKG and blood work, not sure exactly what they did as far as the lab work. You all know we just get the run around and I am not up for that. My husband is treating me with kid gloves and not wanting me to do anything as far as physical and I mean nothing. I know he means well. I don't know if I had a seizure or not but whatever happen was different than ever before. My legs are still hurting insanely. As long as I am sitting with them hanging down the pain is tolerable but when I stand they hurt immensely. My left leg is swollen but my right leg is the one that hurts the most. I still have that impending doom feeling. All today I have been "wanting" my mom........she passed away 3 years ago. Do any of ya feel like you are losing your mind and really forgetting things? I'm not talking about brain fog but like you just don't get things anymore? I am so thankful for all ya. You really make me feel so much better. Mighty Mouse thanks for the email.

Thank you Ernie for responding. I really feel like I am losing my mind. Nothing is making sense anymore. I feel like my brain is shutting down in a sense. Paige

Hi everybody. I know that I have had worries and concerns but never like this. For about a week now I have had severe cramps in my legs upper and lower that feel like charlie horses. They don't go away when you do the usual things. They last for about 15 to 20 minutes and it is excrutiating. I am one of the POTS people that passes out often and I usual have an idea when it might be happening. Well two nites ago I was sitting in my usual chair and I passed out when I woke up my husband was telling me to get dressed because he was taking me to the ER. I asked him why and he said the while I was passed out I was violently shaking all over for about 7 minutes. My oldest son also witness this. I freaked out when they told me. I then tried to get up to get dressed and my right leg was dead. It would not hold my weight at all. I went on the the ER and I was a mess emotionally. I was very scared with all this new stuff. Of course the first thing they say is do you have an anxiety problem. I just wanted to scream. I kept begging my husband to just take me home. When I first got there my blood pressure was 52/38. They made no reference to this. They checked it again and it had went up to 64/40. They asked me if I had heart problems. I tried to tell them about the dysautonomia. It was useless. After all the test they took the doctor came back in and told my husband to take me home and make sure that I get plenty of REST. I am terrified and I have a fear that I am dying or something really bad is going on, why did I have a seizure (if that is what happen), what is going on with my leg? I have had to change doctors due to my former doctor leaving his practice. My appointment with my new doctor is not until the end of Novemeber. I called them the next day to see if he could see me sooner but I was told since I was a new patient I would have to wait. Well waiting may simply mean I won't need a doctor. I am very worried and my family is brushing it off as "it's just another symptom of dysautonomia". They have no idea that I feel like my life is soon going to be over. Sorry for the long vent but I new you guys would understand. I am on Welbutrin and I take Klonopin as needed. I have never been a person that was this negative. It just really seems like something is wrong and no one will do anything about it. Paige

I'm interested in purchasing a few also. Is that possible? Paige

Morgan, I am so sorry you and your husband are having to go thru this. I will keep you and him in my prayers. Doctors!!!!!!!!!!!!!!!!! I don't even know where to start. I hope you husband recovers quickly and you try to take as much time as you can for yourself so you don't get into a bad place yourself. If you have any help you can call on, now would probably be a good time. Be careful and take care. Hugs Paige

Opus88, how did you know you were in need? Paige

Mary, I do have problems also. My voice is too low so that isn't one of them. One of my problems is I have no coping skills any longer. Before POTS I could handle anything well. When I was working I was the one that was the coolest during the "CODES". I just stayed in control and very up on everything. Now these days everything overwhelms me. It is like I have no coping skills. I use to be very sharp but now I have had my husband refer to me as ditzy many times. I never use to have a short temper, now if one little thing doesn't go my way I get all out of sorts. I know I have ran friends off, only a few of my friends still talk with me. So yea I know what you are saying. Paige

Ok, you beat me to it, I was gonna ask for the Harvest Stew recipe also. Paige

Hey, My community celebrated Halloween last nite. I drove behind, while my husband and 2 sons did all the walking. When we were getting ready to go my husband told me he was gonna walk while I drove so I would have some energy left for our "Adult" halloween. He has such a way of telling me what to do in a nice way. I don't know if any of ya are like me but when someone tells me something to do that I don't want to do I have a major problem with it. I hate to set limits for myself when I am having fun. Obviously my husband has realized this and he has learned how to help me without seeming like a "father bearing down on a child." I hope you all have fun. There is a lot of churches having festivals tonite so I think we will take the kids to a few of those. Everyone be safe, be careful and have fun. BOO!!! Paige

I am so happy for you. I hope you will feel a burden being lifted. Hopefully you won't have to wait long. It hasn't been that long since I was approved and I just recieved Saturday thru direct deposit the back pay that was due for my children. I hope you recieve your just as quick. That is wonderful news. Paige