DancingLight

Thank you Nina for offering to send print and send the posts to Melissa. This has worked really well in the past thanks to the efforts of Rachel and JaneEyre/Kristen. I used to try to read all of the posts to her over voicemail but she's so popular I couldn't keep up with the reading and she couldn't keep up with all of the listening! Plus, this way she will get to see the pretty pictures people have posted. I know you suggested mailing things to DINET for Melissa...but I figured it would be a heck of a lot easier for Michelle (and save money cost wise) just to send the stuff directly to the address for Melissa that we have posted before. I have pulled it from an earlier post from last time she was in the hospital. I have also kept the sentence below the address that Michelle had written showing that Melissa was okay with posting her name and address. I was the one who caused the initial confustion about posting an address and last name for her...so sorry for that, but now that we know, this might keep the stream of cards coming faster and also make it easier since she will likely be needing snail mail for quite some time. BTW, Melissa LOVES snail mail! Melissa Mambort 4623 Penridge Rd. Toledo, OH 43615 There was some confusion earlier as to whether Melissa wanted her last name used on the forum. I have spoken to her about it and she has assured me that it is okay to use her last name. I know Melissa is feeling all of this love and support! Love, Emily

Hello all, This afternoon (while I was napping) I received a voicemail from Melissa's mom--so I did not get to talk to her directly and unfortunately the message got cut off. All I know at this point is that Melissa is back in the hospital--and went in Saturday morning at about 3:00 am. She has pneumonia and various other things going on, but I am not sure of any other details at this point. Her mom said her blood pressure had been very unstable, but seemed to be stabalizing today. Please keep Melissa in your thoughts. I just heard from her less than 12 hours before she was admitted to the hospital--and she was telling me she didn't know why my 'worry gene was turned up' b/c she was fine. Very Eerie. I'll keep you posted as I am able.... Thanks in advance for your thoughts and prayers... Emily

Happy Birthday Katherine! I just wanted to say THANK YOU to you for all that you do for DINET. The Faces site has been great! And, you continue, year after year, to be a source of inspiration and support to others. You have such compassion and understanding. You remember so clearly what it was like to be super sick and you have never forgotten that feeling, even though you have, thankfully, gone on to feel MUCH better! It gives you a special empathy for others. Your posts are always informative and you are such an asset to the forum! Thanks! And happy, happy birthday! And, yes, the heat is a bit of a bother! I just talked to a close friend in the south who is 8 months pregnant and man, she said it had been in the triple digits the past few days. I thought NO THANKS! Later alligator! Love, Emily

Thank you so much for posting this link! The trailor for the documentary is incredibly moving and powerful. WOW! The website itself is also incredibly informative with definitions of Lyme disease, personal stories, and links to many, many resources about Lyme. I was so struck by the Faces page in which they had 44 faces. I do not know if Michelle and the documetary folks are still open to suggestions for the documentary but this documentary looks so powerful. It's ironic that I had just posted about DINET's documentary and the faces part right before this post popped up and then the site had a 'faces' page. For anyone who has Lyme, thinks they may have Lyme or is still skeptical--this site is really worth your time. THANK YOU! Emily P.S. I too saw that Bush had Lyme, but he was treated right away so I don't see that he is going to see it as an 'emergent' health care need in our country. Not to mention his history for funding health care research to begin with--the NIH is so strapped and so many researchers have lost their funding. So, I can't see Lyme making the cut anytime soon! UGH!

Katherine, I don't know, I'm confused too! Emily

Maybe the ANA will shed some light on things! Keep us posted. Emily

Lauren, You are not alone. And this is not a topic to be embarrassed about....although easier said than done! Still, I highly recommend you do a search on sex drive, sex, the big O, etc. etc. i can't remember topic headings this late at night, but I KNOW you will find comfort in the previous posts. Type in a search in posts for orgasm or sex or sex drive or such and you will get a sense of the topics that relate to what you want to read. Hope this helps. Emily

Woohoo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Sounds like the best birthday present you could ask for! Love, Emily

Oh Rachel! What craziness! If it's not one thing it's another. One time I had a funky rash (which we never did figure out) and Nina said 'Get thee to the bump inspector!' It was hilarious! But, anyways, I just read your post and my heart really goes out to you b/c you are just having so many new and changing symptoms and no answers. I do hope that the bloodwork will shed some light on things...and as much as I don't want you to have one of those disorders...having an answer to why your health has gotten increasingly worse would be in many ways something to be thankful for? Please do keep us posted. Hugs, Emily

Becca! What you are experiencing is EXACTLY what happened to me with PT. When you had your PT evaluation did the movements of turning your neck cause dizziness or lightheadedness? After my exam I felt as if I had just had a TTT done again, and regardless of how carefully we did the PT (and we tried doing simple manual therapy--no stretches on my own--a thing called neural tensions) I would become so sick we could not continue after three months of no progress. I have rambled on and on about this topic probably already, so if you do a search for DancingLight and neural tensions or manual therapy or cervical stenosis you will find my ramblings. Basically, movement restrictions (did you demonstrate these in your PT eval?) can be a result of the nerves being tight/not sliding easily in the spinal column and can actually cause or complicate POTS symptoms. Using manual PT in the form of neural tensions, myofascial release, and craniosacral therapy can potentially help allow the nerves to slide and move again and reduce POTS symptoms. You may want to have an MRI of your cervical spine to see if you have compression or a narrow spinal column that could be causing you to have less 'give' in your neck than a 'normal' person. My comments are based on findings by a well-respected ANS specialist in the country. Best, Emily

mmmmm, so much fun...NOT! sorry, i should be more encouraging right? but you know i just love having my privates poked and prodded at. let us know what you find out.... can you refresh me on why you are needing these procedures and what they are looking for? hope everything goes smoothly and you are able to post an update soon. later alligator!!! love, emily

Mrs. B, If it works, go with it! There are several people on this board who have very good luck with SSRI's....and for some it is the only tx they need to function. I do well with a low-dose of Celexa (10 mg) but I had to try virtually all the SSRIs out there to find what worked. If you want more info on SSRIs and personal experiences with them, I'd recommend doing a search--for SSRI, SSRIs, SSRI's, or for any specific SSRI like Paxil, Prozac, Lexapro, Zoloft, etc (as a TOPIC search) and you will find a LOT of personal info and tidbits. Emily

Catherine, While I find your recovery wonderful and encouraging, I am worried that your term 'life-threatening OI' is misleading. Did the doctors tell you it was life-threatening? When I just read your response to dizzygirl about why you called it life-threatening--in reality, by your criteria, most of us here would be considered to have 'life-threatening' OI. I really don't want to be rude, but I really don't want people to be misled. We have a disability that interferes with aspects of life--sometimes very profoundly, but this doesn't mean that b/c we might fall and hurt ourselves or can't drive b/c we might have an accident or b/c people might 'take advantage of us' that our illness is life-threatening. It just means that we have limitations and need to avoid circumstances that put us at increased risk for injury, etc. I don't want to burst your bubble of joy. But I don't want new members to be scared that this illness kills. Because unless you have one of the forms that IS progressive or such, it is not considered life-threatening. I'm also with Melissa on this one--my heartrate, long before I ever got sick was very high--always in the 90s. 100 for me is good. And my bp is always about 90/60. I don't function well at all--and am very disabled, but I don't consider it life-threatening. I have also never quite heard of the form of exercise therapy you did--running two minutes--usually it is more like recumbant bike, strengthening exercises lying in bed, or short little walks to start. Did you create this therapy yourself? Or did a doctor? And how after 17 years did this become the answer? Also, are you medication free? Have you ever had luck with meds? I'm very confused!!!!!!!!!! I have tried to follow your post and understand how this all unfolds, but I am a little lost. Thank you, Emily

Jim, I am glad you have an appt. with Dr. Heffez to explore the possible links b/w your stenosis and dysautonomia. As for your EDS question: If you mean by 'definitive diagnosis' something like an actual genetic test, you are right, there is none. HOWEVER, I think that a geneticist, especially one who specializes in EDS can make an excellent CLINICAL diagnosis. I was misdiagnoses by an EP/Cardiologist as having EDS III and later found out, from a geneticist, that while I had a few characteristics of EDS, I in no way HAD EDS and it was NOT the cause of my Dysautonomia. It was well worth clarifying, in my mind! Hope this helps. Emily

April, I'm so happy you popped in to let us know about your new baby and most importantly that both of you are doing well! It's always good to hear from you when you are able to pop in. Congratulations! Hope Gabby enjoys here little sister! Keep resting and I hope the POTS stays under control! Blessings, Emily

Jim, I'm really glad that others with more direct contact and experience with Dr. Heffez chimed in. Corey, wasn't your wife also a patient of Dr. Rowe at one time? Oh, and Jim, the PT for the neural tensions is very specific and someone like Dr. Heffez would hopefully know the best type of manual PT for you--it is something very different than most PTs every practice. And, Maxine.....Milwaukee is a fabulous city! Later alligators! Emily

Hello my dear mammamorgancluck, I think since I am in chit-chat forum and I know that you believe in God I am able to say this.... I logged on earlier this afternoon and saw the title 'Westie' and my heart did this little sinking feeling and I did that thing where you suck in your breath for a moment and say to yourself 'Oh no.' I immediately began to fear for both you and Lois--the two people on the board I know with beloved Westies. I rarely get to log on or post on DINET these days, and it just so happened that your post was at the 'top' so I saw it first. I felt somehow it was God's perfect timing that I had logged on so I would know what you are going through. I am so very sorry about Chloe. I've hear so many stories about her over the past three years and I know how much she was your baby. I just feel like you have enough already on your plate, this loss is just so much harder. Your picture of her romping in heaven was beautiful. Maybe my former pooches are up there with her too and with Lois's Christie! I cannot be without a dog. I know a lot of non-pet owners can't understand that, but I just have to have that pitter patter that Lois described. My dad makes me cry when he tells me how important a dog is for my healing and my well-being and that he won't let me be without one. They are such blessing. I know Chloe suffered so much...and I know she is in a better place, but it also does not make your loss less. You did so much for her and fought so hard for that little sweetie. Much love, Emily

I do best with Klonopin (Clonazapam). I have tried xanax/alprazolam, ativan/lorazapam, tranxene, but not valium/diazapam. The Klonopin helps me to sleep, calms my ANS a LOT, reduces forceful heartbeats, helps with pain and also helps with what is called myoclonus (although that has been renamed, but I can't remember the new name for it). If what you are taking is working why not stick with it though?! I exhausted all other possible meds before taking benzos and now my doc is just grateful something helps. Benzos get a pretty bad rap on this site sometimes, and I often fear addiction. But I am also torn b/w living a little bit better and not taking something that helps. I take .5 mg 3x a day. I would have a lot of shakes and such without thie medication... As for books on tape/audio--I couldn't live without! And the readers are FANTASTIC much of the time. Harry Potter? All the voices done by one amazing actor. Recorded Books and Listening Library rarely disappoint with their readers. I can't read at all...and thank goodness for books on cd/tape! Emily

Mary, I've been one of the folks that flop mentioned...usually very, very active on this site. This is the first time in two years I've been 'away' for an extended period for the most part. Mostly b/c of other life circumstances--not b/c I am better! However, I was drawn so strongly to your post. I have not 'met' you yet, b/c I've not been on much lately, as I just mentioned. BUT, I just don't think it is the doctor's place to say that you 'should not' participate in this forum. He is not a psychologist. I cannot, absolutely cannot, imagine surviving this illness without this site. I've been able to spend some time away lately, but for the most part it has been a daily part of my life for two years now. And before that NDRF was. I find this site invaluable for many reasons: 1. I have met incredible friends 2. The support is amazing 3. I feel less 'alone' here 4. I learn a LOT 5. I can give support to others who are going through something that maybe I have experience with so that they won't have to suffer so much 6. My doctors don't know EVERYTHING. Often DINET members have helped me problem solve things that no one else did. 7. My ANS doc actually asked me to go on DINET and see how other members were repsonding to Mestinon (as it is not a drug he uses). 8. I can always find info. on other's experiences with medical, emotional and spiritual issues that accompany being chronically ill. There's a balance. And sometimes it's a hard one to find. I miss being here as much...a LOT....but I also love what I am doing now with my time (blogging). DINET is still a part of my everyday life in some way--whether it's through emails with friends here, friends here who read my blog, checking in on the site to see how someone is doing, looking up how people responded to neurontin (I do a lot of searches)....etc. I don't know....you have to decide what is the right balance for YOU. And sometimes we need times away and times when we are here more. As flop said, we come and go for various reasons and we are always welcomed back. Whatever you decide, best on your healing journey. Emily

Jim, Welcome to the forum. The connection b/w POTS and Chiari/Cervical Stenosis is a complicated and controversial one. However, I am one of the folks who believes strongly in it and so does my ANS doctor. It is VERY interesting how you have noted that flexing the neck/neck movements trigger symptoms. And you have clear evidence of cervical stenosis. Soooo, there are some techniques to use in PT that can sometimes help relieve the lack of 'give' in your neck--using neural tensions, cranial sacral therapy, myofascial release etc. You would need to find a good manual therapist. This in many cases can lead to improvements and also take away the need for surgery. One other woman on this site, Mack'sMom/Julie has also done this type of PT. I have posted in more detail about it and if you are up for doing a search for 'neural tensions' and DancingLight you should be good to go! The topic of the connection b/w POTS and cervical stenosis and also Chiari have been discussed in great detail on this site and with a search you should be albe to get quite a dose of differing opinions and experiences. Try a topic search for 'cervical stenosis' or 'chiari'. If you still have questions, come back and ask more! As for a surgeon, Dr. Dan Heffez in Milwaukee, WI has done surgery on many patients with Dysautonomia, FMS, and CFS who have cervical stenosis. He has also written articles on this. This is who I would recommend seeing, and I would be interested if others (as there are several) on this site who have seen him would agree. (A search for Heffez on this site will also get you hits). I get a barrage of ANS symptoms from neck movement. I struggle to even lie on my side or in most positions b/c it is as if my neck will not 'give'. Originally, given my strong family history, we suspected that I had cervical stenosis. When I did not respond to PT or to any medications we realized something different was going on. My MRIs came back clean as a whistle, and even after being examined by Dr. Heffez he did not think that there was any myelopathy or, as my doctor suspected, possibly just a narrower than normal spinal cord (leaving not enough room for the nerves to 'give'). In the end, we are now treating me for Lyme disease and it is working. You can argue one way or the other on such controversial topics. As my ANS doc said to me. A cervical stenosis doc/surgeon would say why waste time treating for Lyme when you need surgery for the stenosis. A Lyme doc would say why risk surgery when you might have Lyme. This is the crunch we were in but then found there was NO evidence for stenosis in me, so another cause was pursued. However, the neck pain and ANS flares I have mimic exactly what my doctor sees in patients with stenosis. When I had my PT eval. I felt like I was back on the tilt table the ANS symptoms were so severe as he tested for movement restrictions. As is always said here, surgery is a LAST resort and other avenues, esp. PT need to be explored first. But, there is definitely a link b/w cervical stenosis and POTS> Hope this helps! Emily

Doctorguest, Thank you for keeping us 'in the loop' about conferences and current research. It is certainly encouraging to know that educations IS happening. That is our first step! Emily

Nina! I have been away for sooooo long. Tooooo long. And I missed supporting you through all of your ordeal. I did not even know you were having surgery until Melissa said something to me! I haven't been able to keep up with DINET at all lately...sorry. I logged on primarily to give you a rally of support from me...and a huge hug and lots of healing thoughts your way. Wow, you have been through the wringer. I think you have had about 100 surgeries in your lifetime so far! lol. I am relieved the blood clot was caught, and that hopefully the breast reduction will help your back and spine to feel better. I know it's hard for a 'doer' like you to be patient with your body--since you are MightyMouse and all--but, be patient my friend...you're body has taken quite a beating! You are in my thoughts even though I am not on the board much these days! Love, Emily

Linda, Wow! No one ever looked at your poor spine before? Ugh! Will you be travelling to see Dr. Heffez in Milwaukee???? I hope so. I know it's not a cure, I know it's terribly risky, but if it is the answer? It must be dealt with by the best doctor possible. You seem to be proceeding with caution. I too was examined for cervical stenosis and chiari based on my symptomatology...but show NO signs of either. So, now on to Lyme! A far too long absent Emily

Remember the recent mine disasters/fires in WV last year? The one with only one survivor (mental blocking on the name of the mine and the name of the survivor). Didn't hey transfer him to a hospital and use a hyperbaric chamber for him? I remember thinking that was interesting b/c for the most part I see it being used as a money maker, but this time I saw that they seemed to really think it helped to save his life? I feel like now a days they are saying use a hyperbaric chamber for everything! Just like saying we all have candida, adrenal fatigue and leaky gut syndrome! lol. If only it were that simple we'd all be better by now! Emily

You NEVER have to 'turn' a Tempur-pedic mattress like you do a 'regular mattress'. They weigh a ton! But, you don't have to ever mess with them. I have one and I am very happy with it, esp. b/c it has the adjustable bed option like a hospital bed. I have the original style, but now they have come out with various different styles with softer foam on top...which I would choose instead, but not gonna be buying a new one anytime soon! If you are really interested in a Tempur-pedic, call the company or go online and get the video for free and you can watch it and learn if you think it would suit you. It is very personal preference. I LOVE mine, my mom hates it! Thinks it's too 'hard'. I went to a store and they recommend just lying there for 30 min. to see if you like it or not. I bought mine before there were so many other new memory foam options and before there were also just better options in mattresses in general. Emily