bellgirl

I actually thought I had Optic Neuritis when all of this started. I had blurred vision and horrible pain in my left eye, which was misaligned after a virus, according to one optometrist, but by the time that I made it to the Neurologist after 2 months of waiting, that was, let me just say, less than stellar, who I've found out since has retired, PTL, all the pain was gone, my MRI was normal, but my vision has never been the same. I've been told that whether you have the solumedrol or not, the results are still the same. Wish I had caught you before your treatment. I went to an Optometrist and Opthamologist, both of which said something was different about my optic nerve, but couldn't pin point it at the time and recommended an MRI. I still have vision issues, but lately after going to a corneal specialist and antibiotic ointment treatment, along with preservative free eye drops every hour my vision has improved immensely. The neuro-opthamologist ruled out optic aneurysm, and said he couldn't even see through my cornea to visualize my retina, to examine my eyes, so he is the one who sent me to the corneal specialist...I still use Refresh ointment in my eyes every night, and it has helped immensely, and drops of Refresh during the day. I believe it's my hypovolemia, chronic dry eye, and dehydration forever with dysautonomia, that caused my corneal issues. I probably should have IV therapy. I don't have MS, according to my new neurologist, who is wonderful, btw, and one of my favorite doctors. It's good to get your spine checked out. I just read recently that those with dysautonomia have lewy bodies in their spines, like Parkinson patients, postmortem, since they can't diagnose that without slicing your spine, which I wouldn't recommend doing...lol. I found that interesting.☺ Hope you enjoy Dallas. Make sure to get a big hat and some fine boots, and I hope your vision improves, like mine did!! Still not "normal", but what is normal, anyway?!

Wouldn't you prefer to know who your true friends are anyway? I'll admit with an invisible illness, it is even hard for family members to believe you have a problem, but I believe sometimes it was harder on my husband then it was for me, at times. Don't get me wrong...at first, even he thought I was a hypochodriac...because I initially went to all the right doctors, being a nurse, knowing there was something wrong with me, but no one could find anything...but after many years of putting up with all the symptoms, which became progressively worse, my dizziness/vertigo, vomiting, inability to walk at times during vertigo episodes, running into curbs in my car, that had to be fixed, not being able to see properly, etc. Then he finally understood...but friends don't see you on a daily basis, so they don't see you at your worst, but I've had a hand full that do understand, and the others really weren't good friends, anyway. You reach an age, where you begin to cherish your good friends, and don't have time with all the drama of the others, so your friends dwindle, anyway, and that's not a bad thing!! I'm grateful for the true friends I have, family is far and wide, but communication with them is priceless, and I never would have gotten this far without God, either.

I have kyphosis, which I believe could be a contributing factor, but I also had a virus before developing major symptoms, 13 years before diagnosis. I have an 11 and a half inch neck, Spinner, and I have sleep apnea...lol. Typical neck size for a woman with sleep apnea, according to my Sleep Specialist is 16 inches, so I don't believe that the anatomical neck size is a factor for us. I also don't have TMJ, which is common with a lot of people with sleep apnea. I believe there is some CNS apnea going on there, even though they say I only had two of those episodes after testing. I developed Fibromyalgia after having been diagnosed with Dysautonomia for a year, and that involves CNS sensitivity. There is so much that is not known, but this is an interesting concept, Ann.

Thanks Rich... My dad and grandfather died of a stroke, at 71 and 46, respectively, and I will too, someday, but hopefully not anytime soon. Medication is what made the difference with my dad. He even had a cerebral aneurysm that burst and lived for 12 years after that!! They called him miracle man...he had to learn everything over again. I want to see some grand kids. I'm a great aunt 5 times, but still not a grandmother. I'm 56. That's on my bucket list. Life is a gift from God, and very precious to me! I am very careful with the meds I take, but I need every one of them for quality of life.

Issie, I don't have EDS, according to my Rheumy, and Loot, Micardis saved my life in my early 40's, and prevented what could have been a massive CVA....that's Losartan, btw. I'm doing so much better, as well, so I'm not on as often either.

Yes, we let our mattress air out for several days before sleeping on it, come to think of it, so I hope that's all there is...so sorry he's suffered so, but I'm glad it is getting better.

Your welcome...Let me know how it goes, and updates please...blessings to you both!!

What is house work anyway...lol Hope he feels better with treatment!! Prayers for him and you too.

I don't think it's the mattress...that's a good brand that's been around for years...

I had all that needle testing years ago, because I had horrible asthma after my first son!! I ended up with 4 years of desensitization (allergy shots). I was not allergic to any foods either, but dust mites, 5 different grasses and ragweed. When you have allergies, it can make you sensitive to other things, as well, such as chemicals. Of course, it's really bad for us to be exposed to chemicals or anyone for that matter. Where did your mattress come from, if you don't mind me asking?

Ear issues* not eye. Sometimes I feel brain washed!!

Sorry he is still suffering. Glad he is back to work...it is very scary when you are unbalanced and dizzy all the time. I'm glad they are testing him for allergies. It can sometimes be sinus related. Has he tried the exercises? Shay's Ear Clinic is the best in the United States for eye issues. It is in Memphis, Tennessee, but I had a great ENT, Dr. Pappas Jr. in Birmingham, Alabama. Lodged* in his ear, not logged. lol

Sarah, I do have a GI guy, too; but it was my PCP, who ended up giving me medication, urogesic blue, for spasms for my GI and GU problems, that I sometimes encounter. My GYN did prescribe my zofran for motion sickness, when I was taking a long trip, and my Nurse Practitioner for Fibro said he would renew that prescription if I needed it, so I thought that was a nice gesture. My PCP is really good at listening to all I say to her, knowing I'm a nurse, and she is always willing to help, like when I had trigeminal neuralgia, I just asked for neurontin over the phone, and she prescribed it for the nerve pain. Now I'm on it all the time for Fibro, so when my tooth was so infected, it hardly hurt...lol. Yes, it is very important for us all to be tested for sleep apnea, and you need a reputable center to do this, because there are many types of sleep disturbances. Ask your doctor. At least 30% of us have sleep apnea!! My Cpap saved my life!! I did cough up blood once, so I did go to a Pulmonologist after being told in the ER that I had a mass in my lung!! That was before I was diagnosed, so I assume it was blood pooling, since I didn't have TB or lung cancer!! Sure glad it wasn't either of those. I'm never going to the ER again, unless my husband calls for an ambulance, because I waited 8 hours to be told that I didn't have a pulmonary embolus. I'm still alive and fighting the good fight!!

I go to the Autonomic Disorders/Mitral Valve Prolapse Center of Alabama in Birmingham. They specialize in Dysautonomia with the head of the group being a Cardiologist, but I was sent to them through an ENT, who did a thesis on Autonomic Vertigo; I found him after 13 long years of declining symptoms, and going to all the right doctors for a diagnosis. I have a Sleep Specialist for my sleep apnea. I have a Neurologist, who did an MRI, MRA, to rule out aneurysm, and tests for Lyme, Syphilis, and MS, all of which were negative, who feels I must have something neurologically wrong with me to have this, so he continues to see me twice a year, too. I also have a Rheumatologist and Nurse Practitioner for my Fibromyalgia and I'm equivocal for Scleraderma, but not positive yet. My Primary Care Physician knows about dysautonomia, and I found out about my vitamin D deficiency through her. She also did a test for Myasthenia Gravis, which I don't have, both of which I asked to have done. My GYN has been very supportive, too, even though she couldn't help me, other than to tell me that my 3 fibroids didn't need to be removed, which I think was caused by all the estrogen I took over the years for birth control. That's my story in a nutshell

This is what they told me I had when I started having dizziness/vertigo before I was diagnosed with dysautonomia; It's called Vestibular Neuritis or Neurontitis. It is better not to be on medication at all, just as his doctor explained to him... that it helps the brain compensate for the unbalanced feeling he is getting by not being on any medication. My GYN had a co-worker who had this and was eventually diagnosed with Benign Paroxysmal Postitional Vertigo, which my mother also has...there are exercises that can be done for this which you could look up on the internet....sometimes the hairy like prominences called pinna in the ear canal will break off and get logged in the ear canal and cause this problem. I didn't see this post in June, but I hope your husband is doing better by now.

Yes, I should think so, Charlotte Mine monitored abdominal, chest and leg movement, too, but I think that should be sufficient.

Glad the Clonidine is extended release now for Tyler. That makes way more sense. I take mine (B/P med) in the morning, as well. It lasts for 24 hours. It's the best kind. I don't know why they aren't all that way. UAB has a great sleep clinic called the Sleep Disorders Center of Alabama in Birmingham. They test for everything. I only had 2 REM cycles, 92 arousals, and 64 hypopneas, (which I define as inadequate "mouse breaths"), just 16 apneas, but as my doctor said...."It's like being pregnant, you are not just alittle pregnant". They did EEG's, EKG's, O2 concentration, body movements, the works. There were 124 wires connected to me. It's no wonder I slept at all! Since I was already on Klonopin, I decided to refuse the Ambien, but only slept a few hours, so they had to do a second night with Ambien, too, which did the trick. I was not sleeping well at all for years...few hours, here and there. I couldn't function at all. I was literally the walking dead, so I was at my desperate point!!

Has Tyler had a sleep study? I would talk with your doctor about it. I had tremors, too, and since I was diagnosed with sleep apnea, and sleep with a Cpap machine, I'm so much better. I also had a lot of morning headaches that went away.

Adrenaline surges,Tachycardia that leads your body to have a physiological anxiety. It's not the same thing as an anxiety disorder, but many of us are on medications for anxiety, because it helps our nervous system stay calm. I'm actually on it, because I can't sleep otherwise. My doctor explains it like this...you need something to shut off your brain at night. I also have sleep apnea, which exacerbates the problem. I had several times, where I had trouble breathing, even while I was awake without medication, but it passes. Beta blockers and anti-anxiety meds help immensely with this, but some can't tolerate them. I've been on the same meds for 2 years, and I am so much better.

I've been symptomatic 15 years, so I was 41 at the time. It started with a virus...

56

Naomi...it's the same with breathing. I'll find myself holding my breath for no apparent reason!! No wonder I have sleep apnea!! Aimes...I've been tested for Myasthenia Gravis, as well, because I also had trouble with droopy eyelids and weakness, which are also a symptoms of this, and actually asked my Primary Doctor to check me for this, but these symptoms are also a part of the Autonomic Nervous System disorders, too. I thought nerve pain was a part of Dysautonomia, and thought that all patients with this had Fibromyalgia, or Chronic Fatigue, also, but that isn't necessarily so. Some of us do have autoimmune conditions, endocrine problems, GI and GU symptoms. Dehydration due to hypovolemia is a real problem, too, and that affects so many body systems. Even my corneas have given me trouble, because of this. I've also had pupil dilation, which causes blurry vision. There is such a plethora of problems associated with this disorder....Those who have trouble with dizziness/vertigo should also talk to an ENT to be checked for Menieres. I was happy to find out that I didn't have this or MS, which was another disease that I was tested for, but didn't have, thank God!!

It is a vasovagal response...Your vagus nerve affects many things including swallowing. I have trouble, as well. Especially if I'm eating too fast. I chew very well and take small bites. I've done the same with pills and water, too. It's like you have to concentrate to do it. You have to make a conscious effort to do it properly. I sometimes get this feeling in my esophagus, as well, like it is sitting there not moving in to my stomach. It is a very strange feeling, but if you make a conscious effort to eat slowly, drink slowly, it gets much better. Your vagus nerve is the largest nerve and reaches the longest in your body. Read up on it; it's interesting...

I agree with Katy....I would ask the doctor about a sleep study with or without a video, even though I think a video is a good idea. He could be having trouble breathing, and he sits up to get a breath.

I meant that about 30% of us with dysautonomia have sleep apnea, not the general population, but not many talk about it on here for some reason, so I'm beginning to wonder if that percentage is really accurate. To be honest I think all of us with dysautonomia have some sort of hypopnea, shallow breathing or abnormally low respiratory rate, because our brains "forget" to breathe properly, along with doing other things correctly...