Roselover

I read a John Hopkins article suggesting 2 500mg sustained release tabs three times a day (3000mg). My Cardio wants me to take 2000mg a day. I bought sustained release salt tabs called "Thermotabs" from immunesupport.com. But I have also found that boullion/broth is just as good for me. (For any of you from UK... my husband and I watch British comedies and he asked me if I was going to have to wear red tights and a gold helmet. "Thermotabs" - "ThermoMan") ~Roselover

Lisa, I just wanted to welcome you. I think you will find lots of supportive people here and glean lots of info from everyone else's experiences. ~Roselover

Emily, Just to add my 2 cents worth... I have used a supplement called ZMA for a year now and it has really help. You can get it on immunesupport.com. It is just Zinc, Magnesium and B6. I take it 1/2 hour before bed and it really helps my sleep. If you try it, go slow because the magnesim can give you the runs. Try on a night for a week before you go to two a night. BTW... I thought of you the other day.... do you know where the term, "It's the real Mcoy" comes from??? ~Roselover

Today is the annual Rose Show in Portland. For 9 years now it has been a tradition for my kids and I to get up early and enter roses in the show. I didn't think I would make it today, but with the help of my daughters and my compression stockings I actually made it! AND I won a trophy!!! For seven stems of Old Garden Roses. I have lost so many things that I enjoy, it was such a pleasure to be able to do something "nomal" for once. I am paying for it now, but it was worth it! But then, this afternoon I had a big disappointment. I can't find any doctors who understand my Dysautonomia, but one was willing to help me try to get into Mayo. I called today because it's been three weeks since we sent the info and I was told that yes it arrived and a letter has been sent to me saying that Dr. Low will not see me. They couldn't tell me why, but said the letter should give some indication of that. With all the careful research, thought and prayer that went into this, it's disappointing, and now I wonder what I should do. I know many of you have good expereinces at Cleveland - but it's not covered by my insurance like Mayo is. Dr. Grubb sounds very hard to see, so I just don't know what to do. Then my neurologist returned a call I put in about stomach problems I am having. She suspect delayed gastric emtying and says I should have some tests... barium swallow... possibly stomach tissue biopsy??? I just sigh and think, here we go again. More testing with doctors who don't know much about POTS. UGH! But still, I am so thankful for my few hours out of the house today. My girls were so terrific in making it possible. I love roller coaster rides, but I think I'm ready to get off this one. Thanks to all who read this and for your love and support. I need all of you. ~Roselover

Nina and others, May I be presumptious and ask a question for Dayna? Acutally it's a question I have been struggling with, but I'm guessing as she reads your posts she might ask the same thing... I know an SSRI might help me a lot. But how do you know which one to try? It seems like many people talk about one working for one person and another working for another person. I feel like I am looking at a selection of meds that may help me in the end, but will cause lots of nausea and symptoms to begin with and I wonder, but which one will really work? What if I start with one that isn't for me and I go through all that for nothing. Or five times for nothing? You all had such good advice both on the SSRI's and on other aspects of this. I just thought you could give some encouragement in this area too. Thank you soooooooo much!!! ~Roselover

Corina and Morgan, I'm hoping to go to Mayo sometime soon and I've been looking at where you can sightsee in that area. I found Independce (where Mr. Edwards got the christmas presents from Santa Claus) acroos the Mississippi river from Rochester, and you can also see Sleepy Eye, Mancado and even Walnut Grove. Oh. and Plum Creek. You can even stay in a sod house and there is a Laura Ingells Wilder Museum - living history kind of thing. (looks very touristy). Sorry...a little off topic too. ~Roselover

Ernie, You are lucky to have such an understanding sister. I will pray for you both as your talk and grieve this week and I will remember family on Wed. ~Roselover

Ernie, I wanted to add my love to all the others who care so much about you. You are such a blessing to all of us on this forum and I am so sorry you are having to face one more grief. Stephanie and Ariella have great ideas if you are unable to make the service. I so hard to know what to do and grife is so different for each of us. But you can honor your sister and say your goodbyes in so many ways. As someone else said, search your heart and don't feel guilty over what you choose not to do. With warmest thoughts, ~Roselover

Steph, I'm glad you're feeling a little better!! I'm worried about you having to work today though. I've had the lymph swelling too, but my doctors just shrug it off. I have the worst under my left arm and breast. I wonder if some of your pain is due to this? I think it is Tearose who has lymphedema, she might be able to answer more. ~Roselover

Hi Sally, Welcome! I know there will be a couple of UKer's that will be excited to greet you! I had a similar expereince to you. My doctors found it easier to focus on my pain and label that. So I started with a diagnosis of ME/CFS. But I wasn't content with this so I kept searching and found a doctor willing to look for the cause of my CFS. Luckily, he was familiar with POTS and found that's what I had. Unfortuneately, he was also ready to retire so I am having a diffiuclt time finding anyone to help me with it. As Briarrose said, there is a lot of research evidence that many people with CFS have POTS. I am glad that you too have been able to narrow the cause of your fatigue and hope you can find some help. My first beta blocker made me more exhausted and lowered my BP even more. But there are several choices in beta blockers so don't be afraid to talk to your doctor about the options. ~Roselover

Hi Briarrose, I was thinking about you this morning and wondering how you are doing? Any relief yet? My offer still stands and I'll be home all day today. Hoping you are feeling a little better, ~Roselover

Persephone and Corina, Here's a challenge... Washington... there are two! D.C. is on the east coast as Persephone said... but, the state of Washington (where I live) is on the West Coast... This is often confused for many Americans so now you both know more!!! ~Roselover PS: Corina, Portland, Oregon is known as the Rose city. I live just across the Columbia River from Portland. When you mark where Briarrose and I live you can mark us each with a rose! The famous Rose Festival has just begun and the Portland Rose Show is next Thursday. Don't know if I'll be able to enter any roses this year... we'll see how I feel this week. I'll let you know if I win anything.

Oh Jenn, everyone has said everything I want to say, but I am so so sorry this trip turned out this way. Just wanted you to know how very disappointed and sad I am with you. ~Roselover

Katherine, I want to come visit you!!!!!! My very favorite book as a little girl was "Misty of Chincoteague". I used to dream of watching the wild horses on Assateague! Corina, What a fun project. My husband and I will celebrate our 25 in the begining of 2009. We've dreamed of traveling to Europe! If you get as far as the Northwest you can see the beautiful Colombia Gorge, an active Volcanoe, lots and lots of green. The coast line is beautiful too. Let me know if you make it my way... and I'll let you know if we ever make it your way! ~Roselover

Briarrose, I am so sorry to hear of your pain! Yes, I expereince something like this off and on. I really found cyclobenzaprine to help. but my doctor stopped me from taking it when my liver enzymes were running high. I haven't asked if I can go back on it now. I would just take it when I had a flare like this. I also use some pain killers sometimes. Do you think your reaction was to the muscle relaxant or the percocet? Just like PoohBear said, heat and ice help, but try to find the spot that the pain is orginating in...sometimes that's not real obvious. I use a tennis ball between me and a wall to GENTLY find the orginating spasm and then put GENTLE pressure on it. Again, like PB said, deep massage can cause me more problems the next day. (Often, when I can't even turn my head, my neck is so bad, it is actually orginating just below my should blade.) The thing that helps me the most, and I know it's not what is usually recommended for dysautonomia, is my spa tub. I keep it fairly low temp, but comfortable and the jets are perfect for massaging. I have a seat with something called neck jets which are perfect for what you describe. Maybe you need to have someone drive you over to my house to give it try. I'm sure PT will help, but it's hard to wait isn't it? I hope this helps a little. ~Roselover

Julie, I too am appalled (sp?)... I can hardly believe this is happening to you... but I do believe it. I wonder if the other doctors you have mentioned, who are experts BTW would be willing to help you know how to proceed 1) to keep this off your record 2) to take appropriate action??? Just a thought. I'm so sorry you have to be facing all this. I'm glad you have support here at the forum. I'm really really sad for you (when I get over being angry for you) ~Roselover

Corina, I too am sorry for what you faced, but so proud of how you handled it. I really hope your PC has some suggestions for you and even makes his/her own comments to this stupic Neuro. It must be hard to be a doctor and find yourself at a loss, but I am appallled at how much they valued their knowledge over compassion for their patianets. ( Not all docs, of course, but there sure are a lot out there) Hope you can rest and recover well, Sending a beautiful yellow and pink rose named Pure Poetry warm your heart. Here it comes... did you catch it? ~Roselover

Yes, I had good experience in stopping my periods. I used Seasonale which was, I think, three months off and then a period. It made a huge difference for me, because like you I had a flare of symptoms the week before my period and the two weeks after, which only left me a week to function. I say all this as past tense because I have recently had a hysterectomy. I had it because of a huge tumor, but having my periods totally stopped by the hysterectomy too has a been a good thing for me. ~Roselover

Persephone, I was just sitting here feeling so down because of the same thing and then I came across your post. I echo your cry... is there any hope? I didn't realize how much I valued my intellect... well, I guess I did a little. But my logical thinking is soooooo hard, my memory of details, like Corina said is gone, and even my ablility to form clear and consise sentences is difficult. I LOVE reading and learning new things and now I can hardly think... what do we do? I feel so much for you and with you. Oxford is a great dream, but I can understand your fears. Though I don't have advice, I am holding your hand and encouraging you not to give up on your dreams. We don't know what's coming in the future and maybe this summer is your down time so your body can prepare for the begining of school. I know you are a bright and intelligent woman. So pick up your imaginary ale (actually, I like a shandy better) and we'll toast to better days and your Oxford days... Cheers, ~Roselover

Wow, Nina, sounds very interesting. I have a degree in Early Childhood Development and have always been interested in Autism. I often thought that if I did an MA I might do some kind of research on Autism. That was many years ago and so much has been learned about it since then. Again, I am so excited and proud that you did this. I feel like we are a big family and one persons success reflects on us all. ~Roselover

Hurray Nina! I am so glad you made it without serious complications. Hope you sleep well tonight! ~Roselover

Wish I was from the UK....used to pretend that I was Scottish when I was a little girl I am a West Coast US girl... I grew up in California but have lived in the Northwest for 17 years. The state of Washington to be exact... bottom part of the state. Michelle, I look forward to the map in the next Newsletter! ~Roselover

Ariella, I went through the same stuff with ANA and liver enzymes. For quite awhile, my liver enzymes were high, but no one could figure out why. then the ANA was really high, but only in SS-DNA... which apparently doesn't indicate anything. I was sent to a rhuematologist who then told me that there was no real indication of lupus or other autoimmune disease. I really don't know what all this means, but another doctor told me to be careful with over emphasizing the ANA because it isn't always acurate. Don't know how correct this is, but it's what I've been told. I'm like you... if only I could find the underlying cause and treat it. Maybe you will be one of those lucky ones! Hope so. ~Roselover

Persphone! I was just thinking about you yesterday and wondering how your trip to London was? Was the valslava one of the things they did? How did it go and what did you find out? Sorry, don't have much info to share about valsalva that hasn't already been said, but glad to see you back. ~Roselover

Jenn, My husband says that if we arranged a group visit we could have banquet with big pictures of Dr. Low on each table. Hee hee. I totally understand about your concern for your POTS flare!!! Are you traveling far? Try to keep yourself as calm as possible so not to accentuate it further. I know, hard to do. I had the same challenge with a trip I had to take just recently and I didn't do so well. My stress just made my symptoms worse. Like Steph said, remember that it is good for them to see all your symptoms. Please know you are in my thoughts and prayers, Roselover