DSM3KIDZ

Thanks so much for the update. You both are in my thoughts. This must be such a hard road to go down and my heart goes out to you both. Dayna

Sorry to hear what you are going through. I hope you figure out what's going on but in the mean time don't stop going out. Just get some underware that absorb to wear when you leave. I'm sure they will just be temporary till you figure this all out. Hang in there I know how discouraging it is when new sx pop up. Dayna

I agree with Nina. I know how hard it is to watch the world go by while your sitting still. Hang in there and keep up the hope. I have learned so much from this illness. I now look at myself and life differently. I wish and pray this illness will go away or at least ease up symptom wise but in a sorta weird way it has given me alot of perspective on life. I like the person I have become (mentally not physically) and I wasn't to fond of the controlling self centered person I used to be. I think minus all the extra work my husband has to do around the house he is alot happier now than he was before I was sick. Basically what I'm saying is you have probally made more strides in your life than any of your classmates who have not been through the storm. Your friend will probally find you to be courageous from all that this illness has to offer us on a daily basis. Just tell him what you feel comfortable revealing. To be honest, I avoid all places that I might run into people for fear of the same question. Luckily I moved to the other side of town from where I grew up. So I have yet to be asked that dreaded question. Dayna

I'm going to be honest with all of you. I am completely scared to death to be in a wheel chair. I have no idea why. When I saw the last post of the picture of the wheel chair I started crying. I don't know what my fears are. I know if it get to the point where I can't enjoy things with my family...............I'll definitely put them ahead of my fears and get one so I can still enjoy family events but for now the only thing that is really hard is shopping. I guess I'll just go with my mom or something or give her a list or have her take my kids shopping. She is always shopping and when I asked her if she would help me she said she'd help me when she can. I can't put anymore responsibilities on my husband. He's a firefighter and switched his schedule so he only works Sat 8am to Mon 8am. I know that's a long shift but than he's home all week to be with me and the kids and to help with the little girl we babysit. Thanks everyone for your suggestions and I admire all of you. Dayna

Let us know how things go. I hope you get some relief from this treatment and that the headaches subside soon. Dayna

Okay, I trust my husband to do the grocery shopping...................but cloths, christmas, gifts and everything else I don't trust his style. I pick out his cloths for him. I have 3 kids that are always growing out of cloths, shoes and seem to constantly need something for a birthday or school. How to you mothers get all the shopping/errands done? I know I can do some online shopping for toys and such but cloths are to hard because nothing seems to fit the kids right without trying them on. Also for christmas and stuff I really like to see and explore what I'm buying so online shopping you never really know what to get unless you have already seen it. So that's hard because I don't want to waste money on crap. I have my daughters birthday coming up Oct 5 and I need to figure out how I'm going to get her gifts and party supplies without entering too many stores and it all needs to be done real quick to help control symptoms. She also wants cloths which makes it even harder. Any suggestions? Too many errands........feeling to crappy to do them. I have a wedding Fri. and the boys still need cloths and my brother just had a baby so I need to go to the HOSPITAL (yuck)! I can't miss these events, they are real important to me. I'm also not physically bad enough to use a wheelchair (as long as I avoid stores) so I don't think that's an option at this point. Dayna

Thanks everyone for sharing your thoughts with me. Like I said in my first post my heart goes out to those who feel this way all the time. I will use everyones suggestions when I'm out and about. Hopefully this is a temporary thing. I remember feeling the same way a few times in elementary school and about 10 yrs later when I worked in a factory at 16. And then again when I was in my first trimester 8yrs ago so I'm due for a few spells I guess. Except then everything would turn bright yellow and couldn't see but even then I was able to sit down and never fainted. It makes me wonder if I had this illness all these yrs ago but just very very mild. I wonder. Oh well I won't worry myself sick over this just chalk it up to a bad day. You are all so awesome. I'm glad I have a place where I can get feedback Dayna

I have a few questions re: mididrone that I should have asked my doc at my appt. but now won't see her for a month so if anyone has any experience or can help with my questions I'd appreciate it. 1. I know midodrine is in your system 4-5 hr but do you need to build it up over a period of time to feel benefits or are they suppose to be instant? 2. I'm on .1 of flornief does anyone take both flornief and midodrine? 3. Does the chills feeling go away after using this for awhile? 4. Does anyone who don't pass out use this? my doc prescribed 5mg for 1 wk than 5 mg 2x a day. That seems like a small amount. 5 Can midodrine be used only on an as needed basis...........like if you have a special event or having a bad spell or would this be ineffective? 6. They prescribed midodrine to see if it helps with the migraines and nausea thinking their is not enough blood getting to my brain therefore sending off wrong signals. Anyone else use it for this reason? Thanks Dayna

cardiactec................your funny. Mine happened at Kohl's department store and Target. I decided I'm not going shopping alone with my kids anymore. I'd rather fall out alone so they don't get scared and wonder why mommy is sitting on the floor at the store. I'll also start online shopping if I know exactly what I need. I hate shopping anyways. Dayna

Well it happened again. I felt like passing out and I was in the store again but I was only there for about 30 min.I'm starting to feel better physically and have been really enjoying it than BAM.................I have to be reminded that I have this stupid illness. This happened the same exact time last month. I'm not due to get my period till 24th so I don't think it's hormones. I did just start mididrine (however spelled) but it's only 5mg in the morning for the first week. I know I'm rambling but it's a scary feeling as MANY of you know. Dayna

I was on PPI's for gastroparesis but felt they made my digestion worse. I now take digestive enzymes that help alot. Dayna

Katherine could you also PM me that article. I have Autonomic Neuropathy but my doctor said that's just an umbrella term for POTS and my gastroparesis. Thanks dear Dayna

Well I have Autonomic Neuropathy which caused my POTS and Gastroparesis. What caused the AN we are unsure maybe viral. Let me know if the prednisone works because I suffer from nausea and it seems to be my worst sx next to migraines. Dayna

((((((((((((hugs)))))))))))))))) I'm so sorry to hear this news I lost 3 babies so I know how emotionally hard it is.....................take time to grieve and relax Dayna

My contacts do the same thing. I used to wear contacts all day and now since POTS I've been in glasses for 2yrs except for special events. Dayna

I had the same reaction to that med on 1/2 a tablet. I had to stop it on day 2. Sorry you had the same reaction Dayna

Oh sweetie..............I totally understand what your going through. I have been dealing with the constant nausea for the past 2 yrs except recently (2 months) it has settled down alittle bit-unsure why but happy for the break but also scared that it will come back as bad as always. Nothing works for me except compazine now. Zofran actually made me feel sicker. I would ask for a sample before I paid 180. Hang in there I know it's hard. I wish I had some answers for you but I'm sending you a big hug!!!!!!!! Dayna

I experience VERY rarely and even then I would more classify it as lightheaded. Dayna

I had a few yeast infections with the onset of my illness but haven't had too much of a problem lately. I definitely think their is some correlation but not sure why. Hope all resolves soon.........I know how uncomfortable they are dayna

Thanks everyone. I have tried SSRI's and could not tolerate them but think of retrying it sometime in the future. I'm also afraid of having rebound anxiety that BEE was talking about but I'll just use it at small doses and if the functional effects wear off then they do, I won't up the med to a high dose no matter what happens. BEE- the shingles are almost gone..........thanks for asking. Dayna

I know the topic of benzo is very touchy within this group but I need to ask a question to those of you who take them. If you want to PM me that's fine also. Anyways I take .50 of xanax a few times a month and everytime I take it I become functional. I don't feel great but I'm up and doing things around the house and with the kids. Why would xanax make me functional? What is that drug doing to my body? Maybe it's a clue to the type of treatment I need. Anyways my doc is recommending me take it everyday so I can be functional everyday and have a better quality of life but I'm scared because everyone has scared me about taking this drug. Does anyone take a small amount of xanax on a daily basis? Does it also help you function? I don't have panic attacks and this was prescribed because of my anxiety. So when I feel real anxious I take it and find it helps with ALL my symptoms and makes them more tolerable. Thanks, I know this is a touchy subject but if I could have a better quality of life then why hesitate?

August 23, 2004 I closed my eyes and went to sleep happy and healthy. Aug 24, 2004 I opened my eyes and my life has been forever changed. What happened in those 8hrs I will never understand. I close my eyes every night real tight hoping that when I open them it will be Aug 24, 2004 and this is all just a bad nightmare. When I open my eyes in the morning and realize nothing has changed my heart aches and I search for even the smallest improvement but none have yet to be seen. When will I get my life back? Will I get my life back? Maybe I'll never know but what I do know is that I have done everything I could to make myself feel better and still have no success. Now it's out of my hands and I'm writing this to let everyone know that from this day forward I have to just let it go. I have to accept my life the way it is and try to "bloom where I've been planted". It is definitely going to be the HARDEST thing I have ever done. At least now when I go to sleep I can close my eyes and know what to expect when I open them this way I no longer have to have my heart broken over and over again. Thanks for listening Dayna

My heart really aches for you right now thinking of all your going through and to be without your children makes it 1000x worse. Hang in there and we're all hoping you'll be able to move forward soon! ((((((((hugs)))))))))) Dayna and family

Well my back and neck and hand is getting much better. I still have shoulder pain which I always have. Anyways I think my pain was due to the shingles....................................Thank God it's going away!!!!!!! Dayna

I just went through this experience with Metoprolol 25 mg 1x a day. I had major fatigue and started getting major depression. I waited two months and basically wasted 2 months of my life because I did nothing during that time. I just stopped taking them and with in 2/3 days I feel full of life again. Still my normal sick life but at least I can feel like I enjoy things again. I'm not sure if I'll ever go back to betas again. I was trying mine for migraines even though it helped wonderfully for the tachy. I would call your doc and see if you can try a new one. No point in wasting 2 months. Or if anything give it a full month but no more than that Hang in there I know med trials are hard. I find them to be the hardest part of this illness Dayna