bellgirl

I sure hope not, AllAboutPeace, but I've felt pretty good the last week...no fever, joint pain, and I have more energy than I have had in awhile, because of my massive dose of Vitamin D, so I think I'm Ok...Just a few more days on increased dose than back on maintenance...Thanks for your concern!! No other stroke symptoms, btw, either Just dysautonomia weirdness, I suppose Thanks Katybug, I know what to look for, too, so I am very aware of Lyme here living in the foothills of the Appalachians!! So sorry you are dealing with so many symptoms. My sister in law has a friend with lymes, and she has other issues, as well, and has suffered a lot. Prayers to all... Thanks to to MomtoGuiliana for all the tips, too!

If you don't mind me asking Monstrosity, are you on a SSRI?

I have an infection on my lips that won't go away...I've tried everything!! I was constantly taking cranberry and vitamin C to ward off UTI's as well. Yeast problems, too...Depressed immune systems, and Inflammation are a perfect breeding ground for infection!!

I was tested, but negative....but my husband just pulled a tick off of me the other day, and I had a red raised area, but no bull's eye with a ring around it, so I think I'm Ok We literally live in the woods.

Thanks Redoctober...I'll look up anisocoria, too

Thanks guys...I've always had more dilated pupils, but not unequal...my ANS doctor wasn't alarmed, but thought I should see my neurologist. My neurologist said the next cancelled appointment will be mine, (he specializes in MS/dizziness) and then I was told to go to the ER. I am NOT going to the ER; I know better than that, unless I have other really bad symptoms. I like my neurologist...maybe I need a neuro/opthamologist?! I always have blurred vision that is transient, and so is the pupil dilation, which I think are connected. I'm a nurse. Just found a site on Adie's pupils yesterday...thanks arizona girl. I'm doing a lot of research!! If my symptoms get worse, I will go to the ER...the last time I went to the ER, I was coughing up frank blood, and was there for 8 hours!!...and then they said I had a mass on my lung, (scary), which was supposedly bronchitis!! Crazy. I'm convinced that was blood pooling, with a bronchospasm, because of the dysautonomia...so this is probably related to dysautonomia. Has anyone ever heard of CCSVI (Chronic Cerebrospinal Venous Insufficiency)? Just found out about this...very complicated. Has something to do with increased inflammation and high cytokines. Has anyone ever had a Functional MRI? Or an Angiogram?

My friend and I were praying yesterday, and she noticed that my right pupil was larger than my left. My vision was blurred in that eye, too, which happens when I am symptomatic. I called my ANS doctor today about it, and sent them this picture that my friend took and she told me to call my neurologist. Does anyone have this? And if you do and are on SSRI's, then it is a normal side effect of that according to my ANS doctor. I am not on SSRI's. Since stroke runs in my family, I'm slightly concerned, because I also had a crawling sensation on the right side of my head, too! Thanks for your time....Here is my photo on flickr... Joy, Kim

Funny, I've been researching the vagus nerve!!

I found her before Dinet I have a lot of eye problems...

I think it is just a part of dysautonomia...nothing to really worry about, but irritating, and maybe scary at first, but you kind of get used to it...like ear ringing, which is constant for me! The other night I turned my head to the left, and the whole right side of my head felt like something was crawling around in it. It was only on the right side, like there was a line drawn in the middle of my head. It was just weird

Buzzing, tingling, cramping, shocking and crawling are all strange, but neurological symptoms for me.

I sometimes sit down in the shower. It's easy and quick .

I don't do well with any perfume, unless it is citrus or spicy, but to be honest, I mostly use citrus body lotions instead of perfumes. I've wasted money buying them. My husband has no sense of smell, anyway, so it is only for myself or friends that I smell nice...nothing overbearing!!

I agree with Katybug, and Bren; mine started like LindaJoy, with a virus. I've done every exercise known to man, and have always been in good condition, even after having children, so that just can't be true that deconditioning causes it...I think if anything, it could be caused by over doing like what Firewatcher mentioned in that article of the overtrained athletes!

Exercise helps build up your calf muscles to get better venous return to your heart, and will improve your energy, even though you don't feel like doing it...Try choosing different Beta Blockers with your doctor; I'm on Bystolic, which is cardioselective, and doesn't effect my breathing as much; it works on the vessel walls and the baro receptors. I'm glad you are having a sleep study, because my Cpap machine after being diagnosed with sleep apnea is helping me get better sleep, which helps immensely! My neurologist almost put me on Provigil, but the insurance company denied it, and after everyone who was on it told me of all the side effects, I was glad that I had my doctor check my vitamin D levels after some research. I'm now on Vitamin D3, 4,000 I.U.'s for a month, and also am trying CoQ10, which is seeming to help my energy level as well. I still have dysautonomia, but am much more alert after changing just a few things within the last month; I hope this helps...everyone is different, but we can all relate to fatigue; it's just a part of this disorder!!

Hormones can play a role in this, poor circulation (with us, since we are hypovolemic, according to my doctor) , and poor nutrition can also be a factor. It could also be a side effect of a medication, too.

I bruise rather easily; it could be caused by blood pooling that we sometimes get with dysautonomia. I've had petechiae before and there are many causes, one of which is Lupus, but it can be caused by some poor clotting mechanism within your blood, mostly...some other autoimmune disorders, thrombocytopenia, leukemias, chemotherapeutic agents, and other medications can also be the cause. Since you have Lupus, I would venture to say, that is probably the reason for you, but I would talk with your doctor about it to be on the safe side.

Make it short and simple, and sit down as much as you can, and let people come to you!...Love one another, and I'll say a prayer that everything that is important for your special day happens . I had to travel to my son's wedding, but I went two days early, sat down a lot, and prayed that God would bless our time together as a family, and it was the best it could be; I watched them a lot, and enjoyed their happiness together. I wouldn't have missed it for the world. I did loose a contact lense in the car on the way there, but I have blurred vision most of the time, and with all the tears, it didn't matter, anyway.

Yes, it does, but the key word is prescription. The prescription is the amount of pressure used to open your obstructed airway, depending on your anatomy; the mask is used in the last part of the study to determine the prescription, and whether O2 is needed also, depending on O2 saturation...and if even if you get one, a new one costs 2,000 dollars without insurance. I would be very reluctant to use a used one. Why is your insurance company refusing the request? 30% of those with dysautonomia have sleep apnea!! My sleep apnea doctor says that most apnea is obstructive with some central nervous system apnea, anyway, but there is no such thing as a little apnea; you either have it or you don't. Then there are sleep studies that check for other things other than apnea, EEG's, EKG's, O2 saturation, movement of limbs, chest movement, stages of sleep (you need about 5 REM periods to get a good night sleep), etc. My Cpap has been a God send. I was sleepless for years without it. It has made all the difference for me in my life. I would suggest to appeal it, if I were you!!

Wonderful news I give you a lot of credit for being bold; I hope it lasts for you...stay strong!!

Everything that you say, we have all thought about at one time or another. I believe that the most important reason for living is to be an encourager and support for others who are hurting, no matter what their circumstances. Everyone in this life, experiences some sort of pain, whether it be physical, emotional, spiritual, and we don't always know the struggles they endure either. It sounds as if you have been there for friends and family, supporting them, whenever and whatever they are going through, and that's commendable. I have given up on worrying what other people think, because it really doesn't matter, anyway...God knows our hearts, and the rest is loving others in the best way that we can, and praying constantly...

You are probably right. I finally did get a colonoscopy, but they only found a polyp, thank the Lord for that, but the pain can be very severe. I used to think it was my left kidney, but figured out it was related to my tummy troubles. It is in the exact same place you are describing. I asked my general doctor for a prescription for bladder spasms, which I also get from time to time, and since Urogesic Blue is a smooth muscle relaxer, it can work for the bowels, too. I try to work with my diet, low fat, veggies and fruit, including yogurt before I take any medication for it, but when it is really bad, where I can't function, I will take it. One time it lasted for several months, and that's when I had my colonoscopy, just to be on the safe side!!

To be honest, I can't remember the last time I was on antibiotics....maybe for a UTI or conjunctivitis. I took care of too many patients who became resistant to antibiotics, and when I really need them, I want them to work!! Issie, you have a good point

I think it is why I've lost weight

Anytime there is decreased bad bacteria, there is decreased inflammation, as well...right?! No more of the body fighting the beasties...