bellgirl

I'm so glad that some are starting to realize that sleep apnea can go along with dysautonomia!! I have it, and my Cpap has made a world of difference in my life. I'm starting to really live again!! Supposedly, about 30% of us have it from what I have read. I wasn't sleeping for years, with a very poor quality of life. I still have POTS, but it is controlled to a certain extent, and I'm so much better. Sarah, I'm glad your boyfriend is sleeping better, and Ashley that's a very scary experience when you can't breathe!! I completely understand... I'm in menopause, so I can't relate to the other issue...going through it wasn't pretty, and I did have very heavy periods, though...

I have asthma, too, and there are cardioselective beta blockers, Synthem, which means they are better for people with asthma. I'm on Bystolic, which has been great for me. You may want to suggest this to your doctor. My doctor says NO Caffeine!!, Angelloz...

Wonderful ....My eye sight is better as well...just thought you would like to know!! I had severe corneal issues plus chronic dry eye that they've been treating. I'm also working on my diet, as well!!

Hi Andy, I thought I had MS, before I was diagnosed with Dysautonomia/Mitral Valve Prolapse/Sleep Apnea/Fibromyalgia. My neurologist still thinks something neurological has to be wrong with me, so he keeps waiting. I had similar symptoms. I had tingling and buzzing in my head, heaviness and neuritis in limbs, electric shock nerve pain in my groin, and weird hot spots in strange places. I tested negative after 13 years, being checked again. When you go to your doctor have him/her check for it, anyway. Some have both.

I am equivocal for Scleroderma, SCL-70, the systemic type, which means not negative, but not quite positive either. They are watching me, in other words. I do have Fibromyalgia and Asthma. There are so many autoimmune diseases, over 150 of them. They only had a handful, that were known at the time I graduated nursing school, which was 34 years ago!!

Anything that is extended release to me just makes more sense. So glad you found a solution!! Has he been checked for sleep apnea? I would talk with your doctor about that, as well, if he continues to have problems sleeping. About 40% of us do have it. Just saying...hope it continues to work for him. I can't imagine having a child with this disorder. I will pray that his immune issues will just disappear!! That also is quite common with this...

I'm on Bystolic, and it's great for me. I have hypertension, too, so I believe I would be catagorized as hyperPots. I have more trouble with my Sympathetic Nervous System compared with my Parasympathetic. I was on atenolol at first, and was too sluggish on this med, and my heart rate was 50 sitting down, so I can't imagine what it was sleeping, and I have sleep apnea, too, so that wouldn't have been good. I also take Lorsartan which is an angiotension antagonist for hypertension. It will eventually have a generic. Because Losartan used to be Micardis. I've almost been on Bystolic for 2 years...so I'm hoping soon they will have a generic. It keeps my Heart rate in the 60's, 70's and 80's depending on what I am doing. Sometimes when exercising, it will go too high, but I just watch for spikes and slow down on the elliptical machine. To me it's worth the money. Some pay that for a manicure and pedicure...it's all perspective!

Neuropathic pain can be treated with Gabapentin, Lyrica or Cymbalta, which is specifically for nerve pain, for Fibromyalgia, and they aren't narcotics, although I do take a controlled substance for sleep, because of sleep apnea, and my brain not allowing me to sleep, in very small doses. No one can function without sleep. There are also muscle relaxants as well, if you have trouble with rigidity and muscle spasms. Alternative therapy, like Katybug mentioned, is also another option, but sometimes one needs pain medication before or after these procedures, as well, depending how bad your Fibromyalgia pain is...A massage would always be good therapy, by someone who knows the body well, and physical therapists now need their doctorate when they go to school for it. My son just graduated from UAB. So I think their knowledge of the body, muscles, ligaments, tendons and nerves as related to the spine, and brain, etc. is much more thorough and some insurance companies will pay for some physical therapy, too.

One glass of wine with spaghetti, cheese or mushroom ravioli is all I can tolerate You'd think I was Italian, but I'm Scot/Irish...lol. I'm on too many meds to drink anymore anyway. Can you tell I'm getting my appetite back!! My nausea and dizziness are almost gone. I've never been much on the hard stuff, anyway...although my brother makes the best margaritas in the world and he's a wonderful cook, too!!

Good to know, however, I think I'll keep my money, and continue my Gabapentin, anyway. I believe that those of us with dysautonomia and fibromyalgia, that our Autonomic Nervous Systems just aggravated our Central Nervous Systems. It's just a theory of mine, but as long as I can get treatment, and alter my diet to decrease inflammation and take Flax seed oil, which helps, too, I'll be ok . Eventually I think the insurance companies will pay, but I'd rather a cure for sure!!

I am hypersensitive to smells, too! My husband can't smell, because he fell and hit his head, when he was just a toddler, so maybe it is to compensate for him...lol

I just was bitten again!! That's twice since I had the test 2 years back. This time I'm bringing the tick to get tested. This is ridiculous!! We live in the woods, and it's like I attract them. The deer are always around. I see them, and of course their droppings, so it is inevitable....I wouldn't be surprised if it is a part of my problem.

Khaarina...It sounds like you need a sleep study with an EEG. I bit my tongue on occasion and wrestled in my sleep with clonic type movements, and jerking, too, during sleep, but I don't have epilepsy, but I do have sleep apnea. I would have one of your doctor's refer you to a sleep clinic, where they will monitor your sleep overnight and maybe, two. It's amazing the difference it makes when you finally are able to sleep!! I'm a different person with my Cpap and Klonopin

This is very interesting Issie...Thanks for sharing.

I've had metallic tastes in my mouth on occasion. At first I thought I had a brain tumor, because some times it can be associated with that, but not always. My MRI is normal. This is even before I was diagnosed with dysautonomia and on a lot of medications. Zicam also can cause this, though, too, which I've just discovered just lately. Remember it has zinc in it.

I was having vision issues, as well, and finally went to a neuro-opthamologist, who couldn't see past my cornea to visualize my retina. My chronic dry eye had gotten so bad that my cloudy corneas were causing me to have horrible vision and sensitivity to light. Going to a corneal specialist who prescribed erythromycin ointment and preservative free tears every hour, my vision has improved immensely!! Sorry you are feeling so badly. Anyone with yo yoing B/P is going to feel horrible. Are you on any medication other than a Beta Blocker? Some anti- anxiety meds would also help with your anxiety which could be very much physiological, and stomach issues and gastritis can be linked to dysautonomia, as well. You need some good doctor's. I hope you find some help quick wherever you go!

I've been told by people on this forum that if you have Dysautonomia that you should go to Mayo in Arizona where they are more equipped for Autonomic Nervous System Disorders, so you may want to try there instead. I wish you well, and will pray for results being that you are having new symptoms.

Happiness is a choice, and based on circumstances...Joy is a fruit of the Spirit. Praying for you to choose joy despite your circumstances!!

This was very pronounced for me initially, but as I was started on medication, it has helped a lot. I'm still able to sing in the choir. I look down, or even close my eyes at times in bright light, but I have to limit my social activities because of it. I can't do too much in one day, or I will become too agitated or excited, which in turn will make me symptomatic. My sympathetic nervous system will go into over drive. That's why I usually stay home on Monday after singing on Sunday, because I need some down time. You will get to know your limitations. It is something you get used to after a while. I have ringing in my ears constantly. It used to bother me, but I've learned to get used to it. I ask for booths in a restaurant. I will not sit next to the kitchen, either. Can't stand all the business around either. Flourescents used to bother me, as well, but it is getting better. I used to be very social, but now I'm used to being content with my circumstances, and choose my outings wisely.

The more I try to figure this out the more befuddled I am. I believe that not only are we all different, but as we age our own bodies are changing. Yes, I believe environmental changes, diet factors, weather (heat/cold and barometric pressure) also play a role, and because of all of these factors, it is even more frustrating for the medical staff and researchers who are trying to figure it out to enable to treat us properly. There are so many types and degrees of dysautonomia, as well, with other disorders that seem to be attached and even make it more complicated. For example, some have connective tissue disorders, some have autoimmune diseases, some have Mitral Valve Prolapse, some have sleep apnea, some have neurological components, some have blood diseases, and some have endocrine disorders. The list seems endless...so that being said, we need to do our own research to go to the right doctors in order to get the proper treatment, but to be honest, I'll be very surprised if they come up with some medical cure at least in my lifetime. I say this not to depress, but I'm just being realistic. I don't leave the house without something to drink; if I forget I will stop to get something. I take all my medications. I exercise when I can, at least twice a week. I believe that you can eliminate some flares by being conscientious, but others are unpredictable, and come without explanation. Sometimes I can figure it out, and other times, I just chalk it off to the nature of the beast. I believe I'm doing everything I can for myself to keep as healthy as I can be. I've been diagnosed for 2 years, but was sick for 13 before that time. I would have to say that the last 3 years before treatment, I was a complete mess. Now, I'm the best I can be until a cure. I take each day as a new challenge, appreciate the good ones, help others on several closed dysautonomia groups, pray a lot, and do the everything I can to be the best that I can be!! I'm a retired nurse. My hat goes off to you all who have to work for a living. I know I can't go back to nursing, but I can always help others with my knowledge, and I've even considered volunteering some, because right now, I'm the best I've been in 2 years. I'm still not what I used to be, which was a bundle of energy, but I'm also not getting any younger...lol I still love coming to this site. I believe the ones here are the most knowledgeable about our disorder. Hi Spinner...just checking in

Thanks it did

Four or five shots of Carbacaine worked for me when I was getting a crown. They had to inject again during the procedure and wait a long time before it worked. He said move your right hand, and I'll get some more and he did. Also Marcaine has no epi, but he didn't have that one when I asked. There is also lidocaine without epi for locals, too, if you ask, some doctors will have it. I know this thread was 4 years ago, but I thought it might help some that look it up now. They wouldn't let me on the ADA site to view the article above, btw. I think it had something to do with the protection on my computer, though.

Wonderful Always good to have HOPE...PTL...Joy, Kim

My neurologist still thinks in order to have dysautonomia, there must be something neurologically wrong, so he continues to see me every 6 months. I always come up with interesting questions for him, but I'm convinced that no matter how many medications you are on, you will still have sick days, because they are just palliative, not a cure. You just need to enjoy the days you have that are good, exercise, try to eat right (not a lot of sugar and no caffeine), and do the best you can to find a solution to your own problems. Unfortunately, it requires research on your part, and many doctor appointments!! Sjorgen's, as mentioned in this thread, needs a lip biopsy to be definitive. I just had a blood test, and my neurologist told me that neither is very accurate in diagnosing it. I believe with all my eye issues, I also have it. Dry mouth with constant bacterial infections on my lips, poor teeth and gums, severe dry eye with corneal ulcers, edema, and cloudiness, etc.

I went to a Neuro- Opthamalogist first, and he couldn't even see my retina, due to my cloudy corneas, but everything neurological was ruled out. I was concerned about an optic aneursym, since my dad had a cerebral aneursym, and I couldn't see to drive either. I believe I had optic neuritis 15 years ago, and couldn't get in to see a neurologist for 2 months, so by that time, the inflammation was gone. If you are referred by another physician, and explain your situation, they should see you sooner. I've always had problems with my vision, since all of this started. I find it interesting that at one point in the brain that the optic, vestibular, and vagus nerves come together. I still believe that most of mine are circulatory, though. I've had silent migraines, too.