Guest tearose Posted December 28, 2006 Report Share Posted December 28, 2006 I can't believe it has been five years since my last pilgrimage to the great wizards of MN...I will return next month to do a new round of ANS testing and most importantly to me, figure why I am not sleeping well anymore.After my last physical setback I stopped looking for part time work and decided to spend any spare energy doing the domestic things around the house that I could manage.I don't think I've slept well in over a year...can this mess us up this badly?The locally done sleep study of 2004 did show hundreds of sleep arousals that I am unaware of but they could not explain the cause or the treatment...I hope this is the key to helping me get restorative sleep again. I am hoping Mayo uses all there best testing tools to dx and treat this...I am hoping...I haven't been myself for the past few months. Increasingly feeling like every task takes so long and uses so much energy. I feel like I've also lost some of my "softer side" like I'm so focused on trying to do one chore that I can't multitask anymore.Besides the ttt and thermoregulatory sweat test, I will be doing a well thought out sleep study and a gastric emptying test. I need to also address bladder retention.I am hopeful that they will be able to offer me a treatment plan that will bring me back to better function. I am sad that I can't work, can't vacation but I am going out of my way to plan and prepare for this trip since it is my true "only hope" for improvement in the long run.I haven't been reading anything new on dysautonomia dx...does anyone have any information on what is new on the scene if anything?I continue to have problems with medicines...swelling, or allergic reaction and neuropathy so I still only use electrolytes, vitamins, and compression to manage my dysautonomia. I did stop getting on the treadmill on a regular basis and I am sure this doesn't help...I guess I'd better turn this around.Any suggestions for testing?Any suggestions for Rochester,MN in February?Any sleep problem "mini burst" insights?tiredly drinking my morning coffee ("nectar"), tearose Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted December 28, 2006 Report Share Posted December 28, 2006 Hi Tearose,Sorry things have been going soo crappy for you...I also have the sleep probs, my docs are plannning on putting me as an inpatient to see what's going on. I feel so much more irritable, etc. due to my horrible sleep patterns..My EP said he has an older women who has the sleep probs like I do (waking with tachy, sweats, etc.) and that they found numerous arousals (I'm guessing that means the adrenalin shoots up???), so it would be interesting to see what would be found with me. Most of the time it's the "hot flashes" that wake me up...Being 22 y/o I think I am too young to have those quite yet!! Anyhow, I hope you get soem sort of answer! Goodluck and keep us updated!Jacquie Quote Link to comment Share on other sites More sharing options...
kmpower Posted December 28, 2006 Report Share Posted December 28, 2006 Hi to you both. My sleep got a little better when I reduced the BB dose.Perhaps you could get a Quantitative EEG. Sleep disturbances are often measured in terms of brainwave abnormalities. Regular EEGs show some patterns, but Quantative EEGs are much more specific in terms of which parts of the brain are involved in the disturbances. Treatment can then be directed more specifically using neurofeedback, pharmaceutical intervention, lifestyle mod, etc.I am sorry you are suffering so much. With everything else you are going through, it doesn't seem fair that you cannot at least sleep well.OLL Quote Link to comment Share on other sites More sharing options...
Maxine Posted December 28, 2006 Report Share Posted December 28, 2006 Tearose,Uggggg---I'm so sorry your haivng sleep problems----that's the worst-----we need sleepp to recover from the rest of this mess..........I definately think your heading in the right direction going to Mayo---having the sleep issues addressed, along with the gastric emptying test. I wonder if your bladder retention problems are connected to the neuropathy? My sleep study showed apnea-----51 respiratory episodes in 3 hours. I thought I was sleeping----never thought anything close to apnea.............I hope you can find the answers you need to feel better---and more functional.Good luck------------------Big Hugs,Maxine :0) Quote Link to comment Share on other sites More sharing options...
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