Roselover

Oh Mary, how frustrating!!!! Did he suggest anything to help you through the weekend???? I'm just sighing and rolling my eyes for you! I am glad you asked the question about the urodynamic study. I was going to pm Melissa because Dr. Grubb told me I had to have one too. Now I have a good description - though I still don't want to do it! Keep us updated! ~Roselover

I think it's suggested that florinef is taken in the morning because it can keep you awake at night if taken too late in the day. It doesn't work like midrodine where it will make your BP too high when you lie down though. Hope this helps! TTFN, Roselover

Hi Everyone, I just got home from a long trip to Ohio from the West Coast. I finally saw Dr. Grubb and it he was just as described on this site. We waited two hours after our scheduled time, but then he spent three hours with us and had GREAT insight into my personal situation as well as giving us a great education! I just hope my docs here can follow up with his recommendations. I would defineately reccommend him to those who have tried the typical treatments and they don't work. I am exhausted from travel. Four airplane trips and on the last one I thought I was going to pass out the last 45 min. But, I'm home, slept in my own bed - hurt a lot and am very POTSY. BUT - this morning I am begining one new med - Provogil - so we'll see what happens. BTW Provogil is not what he would normally prescribe because it's so expensive and hard to get insurance companies to cover, but I have several sample boxes here so he said to start with that since it's kinda like the cadillac of Adderall or Ritalin. Gotta go and keep taking in the fluids... Love Roselover

Hi Chrissy, I was just were you are just four weeks ago. Though I was told that I could live on Boost/Ensure that wasn't very reassurring to me! But the GI doc at Mayo prescribed Domperidone. I had to order it from Cananda, but it has been a miracle med for me! I am eating solid food and even gaining weight. I DO still have to be careful and stay away from very much fiber and fat. I've experimented with a few things this past week and did OK except for the oatmeal I tried this morning. But, I can live without oatmeal when I can eat other things like Rice Crispies etc. I just wanted to see how I did with it. If you need more specific info on what and how I eat, just ask - PM me or I'll try to check back on this post again soon. There really is hope!!! BTW - I get boughts of diarrhea too!!!! ~Roselover

No matter how old we get, a comment from "Mother" can really throw us can't it? I'm still reeling from something stupid my mother said this week too.... but I keep reminding myself that there is a difference between how she makes me feel and the TRUTH! So I keep reminding myself of the truth and get a few people I respect to reinforce the truth for me. So, Pers, the truth is exactly what Ariella said. You have accomplished a full session at Oxford. No lazy person could ever do that! On top of it. we all know how much harder and at times almost impossible it is with POTS and yet YOU DID IT! And now you DESERVE some rest and some time to let your body be sick if it needs to. Hang in there girl. I hope you can get some guiltless rest as well as get all the reading done you need to. Love Roselover

CLAP...CLAP...CLAP... I am so proud you didnt' give up - even when it seemed hopeless! We're celebrating with you! ~Roselover

Oh I am so emotional this week, your report brought tears of joy to my eyes. Please let us know what they tell you... I'm anxious too. So glad you let us in on this and allowed us to pray for you! Love Roselover

Ernie, I don't know what to say. My heart sank as I read your post. That you have to face this fear every moment of every day makes me so sad. You are such a caring person and so often the first to respond to anyone's post. You are such a backbone here. Your fear of scaring others reminds me how much you think of others. But I must agree with MM - those who will worry, will worry. We want to be a support to you as you have been to us, so I'm of the opinion that you should share your fears with us and allow us to pray for you. And that I will be doing! I want you to know you have been an inspiration to me many times over the past year I've been on this forum. Sending much love and a hug, ~Roselover

Corina, I really agree... It's sooooo nice to hear from you Emily! Thank you everyone for your kinds words and encouragement of me. I hadn't even thought of this story in that way. I have been so worried about what my illness was doing to my family emotionally. And there's been lots of talk in posts about how to help our children deal with this and how much it was going to hurt them. This little story just helped me see that our kids are able to grow and mature even in the midst of a sick mommy. My daughter is a very nurturing personality, but she's lost a lot too with my illness. I think she could have become bitter, but instead she's adjusted and is applying her personality to what life holds for us. I hope some of you are right... that she's seen this in me and it's impacted her. I sure know I don't always handle my lows very well. But maybe even in my grieving she has seen something to emulate... I don't know. Anyway, I hope this encourages all of you that your illness and lows don't necessarily impact others only in negative ways and that our children can come out of this being more loving compassionate people. Love Roselover

Becky, So sorry to hear you are facing this. I know exactly what you mean about making the choice yourself but it still hurting. I'm sending you a big hug. As for the crying, yes, I feel awful after crying. It seems to energize the POTS. So does great emotional stress - for me anyway. I hate crying because it makes me feel sicker, but sometimes my emotions just need this release and there's no stopping the tears. As always, make sure your doctor has checked out other causes for your symptoms - which is sounds like you did. I just wanted to let you know how crying impacts my body too. Love Roselover

Oh Zoe, I grieve with you tonight. Anniversaries like this one are so hard. I wish I could just sit down next to you and cry with you. It just doesn't help to say "things could be worse for me". When it hurts, it hurts and this really hurts. I believe you can hold your baby one day and he/she will know you as mommy. But until that time comes, it's OK to grieve what you lost. Sending a big hug, ~Roselover

I just wanted to share this little story. Many of us have children and all of us have family members who are impacted by our illness. Mine has been three years nowand life around my home is totally different than it was before I was ill. I was talking with my daughter who is almost 16 and a sophmore in High School. It's about this time in life that kids begin thinking about "what am I going to do with my life?". She had been thinking about it and just doesn't know what she wants to do. We talked about her strengths and her interests, about college and careers etc. Then she said to me, "Well, maybe, if you need it, I will be your caregiver and take care of you." I was shocked. I guess I just figured that she'd feel a little like she couldn't wait to get out of the house and away from my physical struggles - not away from me, but just to live her own life. It meant so much to me that she would even say such a thing and think that it could be a fun and meanful thing to do out of high school! Now, I sure hope I don't really need such a thing, but isn't it precious that she'd say it? ~Roselover

Nina, you are an inspiration! Thank you! ~Roselover

Persephone, You gave me goosebumps! Thank you for sharing that with us!!! ~Roselover

Persephone, Just wondering how you are doing and what you decided to do about the dinner? Do you feel good about your decision? Just thinking about you. ~Roselover

Steph, Like others have said, zanaflex is a muscle relaxant and is often prescribed for Fibro because it's suppose to also help straighten out sleep cycles (docs at OHSU told me this). However, I only took it for a short time becuase it gave me severe stomach cramps. The one that helped me more for both the pain and sleep was cyclobenzaprine. I had to stop it when my liver enzymes were elevated and it was the only thing they could think of that might be causing it. It also works a little like an antidepressant so don't know if you can combine it with other antidepressants. However, I've learned a lot about Fibro and a consistently sore thumb and knee don't seem to fit the description - I know you don't want that label anyway! :-) Hope your pain improves! ~Roselover

HAPPY HAPPY HAPPY Birthday Nina! Thank you for all you do for this forum!! ~Roselover

I LOVE them!!!! Thank you for sharing! ~Roselover

It is so emotionally healthy for us to stop and think about what we are thankful for... especially when things are really rough. I'm on a roller coaster of emotions about my health but the more I stay focused on the things I can be thankful for the more peace I have. I am thankful for: #!: My Husband! He is so faithful and loyal and tells me he wants me and needs me even in the midst of this horrible health time! #2: My kids: they are learning to care for others in ways they never would, and yet they still need me and give me purpose in my day. #3: My relationship to God: My problems seem so big to me, and yet, when I was at Mayo, I realized how many things can go wrong with the body and how many people have their own crisis. I began to feel very small in the big picture of life and history, and yet God cares personally about me and my struggles. That makes me feel very loved. #4: ALL OF YOU! I agree with Mary... I couldn't have handled this year without this forum! I learn from it, and I find support and love from people I have never met. Some of you have become true friends, but all of you make this forum what it is. As Emily said, I am also thankful for Michelle and for the moderators who help make this forum what it is! #5: Candles and Music: they help me relax #6: My tape player and Emily who gave me idea of listening to books when I can't read! #7: My recliner chair #8: My memory foam pad on my bed #9: A great hospital nearby. I hate being in the hospital, but at least I have a wonderful one to go to when I need it! #10: TEA! It's the one "food" that I can still enjoy! I love tea in a teacup! ~Roselover Oh... one more... my sons dog, Taran. He's such a little cuddly lap dog and loves to sit with me all day long!

Oh Chrissy, I can so relate with you! I've just returned from Mayo and they've explained that not only does the dysautonomia cause the stomach to slow down (gasteoparesis) but it can also send unnessecary messages of nausea (and in my case, pain) to the brain. There are a few meds that may help. I have taken phenergan, but the doctors I've seen would prefer I didn't as it may interact with the dysautonomia in some way. I take Zofran and I've gotten a transderm scope patch which I haven't tried yet. Reglan is supposed to help with this and it worked for me except that I had a bad reaction to it. They've also suggested Domperidone which is not available in the US - but it not only helps the stomach to work better, it also is supposed to stop the nausea messages. I'm going to try it in a few weeks and if it is successful for me, I'll let you know. I've had some time the past couple of weeks with discouragement over the digressing of my symptoms and wondering when it will stop and if I'll have improvement. But there are many on this forum, like Sunfish, who have been really down with these things are are finding themselves stabalizing. I have to hold onto that hope and I hope you will too. Two things that help me when I'm at my worst: Gatorade and Ginger Ale. They seem to keep my sodium and potassium up for a while when I can't eat. But, I have ended up in the hosptial a few times anyway... but maybe the ginger ale will help you hang in there too. Sending a comforting hug, Roselover

I've had the flu shot the past few years with no reaction and no flu for the year. I researched a lot last year before getting one because I was on Florinef. However, I had one this year along with a Pneumonia shot. One or the other gave me a high fever and body aches for about 24 hours. I actually think it might have been the Pnuemonia shot because it was red and swollen and spread across my upper arm. I just know that my body couldn't handle getting the flu. ~Roselover

Finrussak, thanks for the posting on domperidone. I was going to do some research this morning. What you said about not crossing the blood brain barrier is exactly what I was told at Mayo. Reglan does and thus the possible bad side effects. And about your question of the cause of the motlity. What they were able to do for me this past week is to confirm that I do not have a structural problem in my stomach/ small bowel. They told me that the motlity issues I have are very consistent with the whole problem of the autonomic system not working. So basically, for me, my nausea, pain and motility issues are from the same malfunctioning that causes my POTS. Don't know this is the case for everyone, but this is how my body is working. Ernie, glad to hear about someone who's tried the domperidone. Thanks! ~Roselover

Mary, Yes, the med from Canada is domperidone. Has your daughter tried it? I'm also glad to hear that you value Zelnorm. Finrussak's comment makes me a little more cautious, but it's the best for me to begin with. I kinda don't think it'll work, because my problems are higher rather than lower, but we'll see. I really want to stay out of the hospital this coming month! (and it's gonna take a few weeks to get ahold of the domperidone) I don't have my "official" diagnosis yet, but yes, it's gasteoparesis with periods of psuedo obstruction. They were able to confirm that my muscles have the copacity to work, but the communication to cause it to work is failing. I have great hopes for the domperidone... but again... we'll see. I get the full report and test results in a couple of weeks. I was inpressed that the doctor I saw was very familiar with dysautonomia and it's effects on digestion. Finnrussak, I thought 10 min was very short too. In fact I have my worst HR and BP drops after 10 min, but apparently I had enough to confirm the POTS in that short time. ~Roselover

Steph and Mary, you both sound like I feel. Steph you made me laugh, but I know exactly what you mean!!!! Bamagirl, I'll be seeing Dr. Grubb in Jan and will run the idea of tickborne stuff by him. I did see and infectious diseas doc and she is running quite a few things...I don't remember what all she's checking, but one is a fungus that is airborne from bats and birds, which we have a lot of in our woods. Thanks for the input. I really think the fevers are tied in with the periods of cold and strange sweats. Just wondered if anyone else felt this way. Roselover

I altnernate between being really cold to having a low grade fever. The doctors have been searching for a cause of the fevers, but sometimes my temp is way below normal and my hands and feet are freezing cold. Then other times I break out in a sweat for no reason. I'm thinking maybe this is another autnomic symptom. Does anyone else have this and occaisionally run low grade fevers? Just wondering, Roselover