Maiysa

Hi Steven, I also have been having the right eye droop. I went to the neuro and she said it's from the start of a headache she showed me her eye too, it was doing the same thing. They also now think I have occipital neuralgia. My head hurts daily and I go back and forth sometimes in the bed and when I turn over, it feels like my brain is sloshing from side to side in my head. haha. And it hurts. My blood pressure goes mostly hyper and can go really low if things are severely wrong. But my blood pressure goes up from standing mostly. Today at breakfast I got so woozy, and I noticed if I just get up and walk I can feel better. I don't know why. As long as I'm moving somedays it's better. I find if I can keep the inflammation down in my occipital area, these symptoms aren't as drastic. And some days I get so emotional, and it's usually from some strange pressure in the back of my head. I don't like it. But hope you are feeling better. Just some days this is depressing.

Thank you very much for your reply Rachel! Hope you are having a good day. I have tried to research this subject, but I'm not having good luck finding a lot. And some of the information that I do find, I don't quite understand. I will keep looking. Thanks again.

This is exactly my problem. As a matter of fact they've had me test my blood sugar and it's not that unusual for what is happening. If I don't eat every few hours or hour in the morning till about 1 pm, I will get very sick, dizzy, have severe nausea and strange pressure in the back of my head, by my occipital and flushing. I have always been a very thin girl, but I am gaining weight from having to eat every hour or two for 6 hours. And snacks don't help, I have to get full. Bizarre!

Hi Carol, I'm newly diagnosed with autonomic neuropathy along with orthostatic intolerance and we have similar symptoms. I also flush sometimes after I eat, it has gotten better over the years and not as bad, but it has recently flared up after eating, which I was told that it is typical of autonomic neuropathy. But maybe it's just any dysautonomia, I'm not sure about POTS. Sorry, wish I could tell you more. Doctors like to try to find where the autonomic neuropathy origins are from, but I didn't test positive for any of the six or seven diseases that it comes from, therefore idiopathic is my diagnosis, meaning unknown origin. But my doc believes it is autoimmune but can't make it official since it doesn't show up in tests. I really am just learning about the disorder myself. I'm not saying this is what you have, but maybe they could do some testing to rule it out. I am doing the MCAD test next week also just to rule that out, since they haven't quite figured out all of my issues. I go to Mayo in Scottsdale and have had good luck with a doctor there. The best test that helped me was something called a QSart test. Not a lot of facilities have them. So they are not that easy to find. I see you are in Colorado, can you travel to Rochester Mayo? They have a great neuro facility and have some doctors who specialize in this. But there are more advanced members on here to help you better with that than me. I hope you can find out soon what is going on. Hang in there. Getting diagnosed is not that easy sometimes.

Thank you all! Rubytuesday...that's a lot of miles. Good for you. I hope you can get back to it soon! Thanks for the encouragement Chaos-full moon summer bike rides-I will have to remember that next summer. And thanks Katybug & Dizzy for the encouragement! I took a break today. I noticed I'm having a lot of bruising....a lot...around my knees and all over my calves. Probably not used to pumping all that blood.

HI All, I've been very sick since June and haven't really had a good day in months. I had a cold that triggered dysautonomia worse than ever, as well as constant 5 months of menstrual cycles with a few week break now and then that created some very intense issues and then of course the desert heat triggered what was already triggered and anemia...blah blah blah. My blood pressure was quite the yo yo and I was sick!. Anyhow, Dr. Goodman's nurse called and asked if I was moving-exercising?....and I told a lil lie...and said, yes? I wasn't really lying, I did tiny bits of yoga three days this month and took a walk..twice. but I knew that's not what she meant. I think the nurse knew I was full of it. I used to be very very athletic, but haven't been able to do much in 5 years. She said, you have to keep moving, it's important! Okay...I answered sadly. Who wants to exercise when you feel like crud? But okay. The most I've been able to do in 5 years, and it was a good day, was 12 minutes on the treadmill but it made me feel uncomfortable and dizzy with pressure in the back of my head. So I had bought a used pilates power gym, that messed up my neck in one use, then we got an elliptical, that made me dizzy. I used to be addicted to my mountain bike and have missed it so much...I thought there is no way I will be able to do that, but what have I got to lose. So we granny'd up my bicycle with new handle bars-so I don't have to lean and a granny seat for comfort. The purple handle bar tassle's were tempting but I had to say NO. Anyhow, the first day I got so dizzy that I had to lay on the sidewalk after just a short ride-I didn't know how I was going to get home. Then I didn't feel too great afterwards. So my sweet neighbor went with me the next few days. It was really a rough 5 days and afterwards was a bit difficult and I mostly stayed on the couch. But today my husband went with me and I think after a week, I am up to 3 miles total-with half of it being down hill, but it was easier and I didn't get sick after. We even did a slight incline. I thanked God the entire way up the bike path that I have missed so much. Of course I walked some of it...but I didn't care, I was so happy. I don't know what tomorrow brings or next month, but it has at least given me some hope. But am sad to say my husband crashed in the bushes on our busiest street in our little town. After I saw he was okay, I could hardly keep from laughing. People were honking. And he was worried about me! Luckily he has a great sense of humor and he was just fine. Poor guy. We've been teasing him all night. Anyhow, I'm vowing to do as much riding as I can and when I can. I've had so much taken from me that it felt like such a huge victory. I can no longer travel very far and for sure no plane rides, goodbye to my awesome job, no wine, no chocolate, no coffee, not too much laughing or crying or I will black out, but if I can ride my bike, it all seems not so bad. Thanks for listening. We will see how it goes.

I do get this Julie. I've tested my blood pressure while it was happening and it's about 85/52. So I don't know what's happening. Sometimes I have to lay on my side because I can feel the blood actually pulsating in the back of my head and it makes the headaches and pressure worse. Also, when I lay down is when I feel my heart doing some flip flops and then I get a bit of anxiety. But I don't know what it is. I just chalk it up to my fluctuating blood pressure. I did get my thyroid out a few years back and it has actually become a bit more tolerable, but before that, it was pretty tough. But I don't have POTS like most on here, but did have a form of it for a few years, but it was more of a hypertensive situation. I have a few undiagnosed issues, but I have idiopathic autonomic neuropathy with orthostatic intolerance. Sorry that you are going through all this as well. It's definitely life changing.

Hi Julie, Wow, this all brought back tough memories of when I first got this. My blood pressure was very similar to yours. I noticed on an old hospital chart that mine would go up to 156/100 when standing, I went hyper instead of hypo standing up. Every now and then my blood pressure would drop extremely low, but not from standing. The doctor at the hospital told me that my blood pressure was over compensating to help me stand up. Anyhow, it took 5 more years to get diagnosed. But at the time I had an infection in my lungs and a few years later developed thyroid issues, once I had the thyroid out, some of the symptoms, mostly my heart rate and a few other got better. But I still am having some issues. I have autonomic neuropathy which they think has an autoimmune aspect. I'm not saying this is what you have, so please don't worry! But it would be good to rule it out. Anyhow, I'm glad that Naomi noticed you have autoimmune disorders since that is a key piece of information. I have had really great luck with Dr. Goodman at Mayo in Scottsdale. Not sure what area you are in, but others know of some great doctors if you are in the east. Autoimmune autonomic neuropathy is something that can go along with the antibodies you have tested positive for. There are treatments in some cases, so do your best to get to the right doctor as soon as you can. If you need to private message me, feel free. So sorry you're not feeling well. Hang in there. And you have little babies, I'm sure it's hard. Hopefully you can get to feeling well soon, that's a lot for one plate.

Dblonde, I have the same thing. If I'm talking to someone for too long I get so dizzy. Or if they talk to close to me, they start looking fuzzy and out of focus. It is embarrassing, especially if I get myself too animated I start to black out or if they are too excited it wears me out. And I was a theatre actress in college and nothing makes me nervous, but now if I'm just talking to someone new and am slightly nervous I start to feel so dizzy and sick. It's not normal. Then once that happens I can only catch every other word the person is saying. I feel like an idiot because I can't concentrate. Even talking on the phone causes all the above. If I could just be pushed around on a gurney I could be a much better conversationalist.

This is so interesting. I was told with my condition that I have to stay away from stress. What happens is that my fight or flight is getting turned on and won't go off. Even too much good or excitement can cause an overwhelming feeling for my immune system. I got over happy about something today and now I can't stand up straight...so dizzy. And I've had to disconnect from most people whom were causing nothing but stress in my life, and mostly takers, so I'm only down to a few of my old friends. So sad but true. haha. This is life. If I cry I also get pressure in my head, so had to give that up and now it's only for special occasions.

Is it that autonomic neuropathy is rare or something? Do not that many people have it? I have noticed a few on here have the same AN, but noticed they also have POTS or other diagnosis which I don't have. Does autonomic neuropathy fall under a different category not on this site? They aren't sure about my entire diagnosis, still working on it, but just curious about all the pain I'm having and can't find much about why there is pain or if others have pain too.

Well if that's where you worked, your fear makes more sense. I see. Yeah, two weeks is agony. I've been there. Watch a funny movie today! It helps my fear so much. Hugs to you. Maiysa

Hi all, I see on the front that there is a lot of information on PAF, MSA, and POTS. But I'm having trouble finding anything that relates to autonomic neuropathy. I'm having the most terrible pain in my neck and between shoulder blades. And every time I'm on the computer my neck starts throbbing. So now we've bought a lap top and a wireless mouse and an adjustable portable laptop desk, but it seems that just holding my neck still for even 10 minutes is painful. I have to keep moving. I actually used to write, so am needing to get back on the computer. Social Security has turned me down for the 3rd or 4th time. Ugh...anyhow, am just wanting more information as to why I'm in so much pain. I was diagnosed with fibro in the 90's, but this is gone beyond that. I do have orthostatic hypo and hypertension, but not sure if it's daily. Any ideas? Thanks for listening.

Bren, I'm sorry to hear you're having a nervous time. But remember he is sending you in to check for a bone infection. Please don't read anything on the internet. With all the symptoms I'm having it is a sign of many terrible things and so far for the past 6 years not one of the doctors biggest fears for me has come true. Knock on wood. Not saying cancer can never happen, but just a small infection can cause dysautonomia symptoms and it's probably what it is. I can't tell you how many times I've gone to the doc and they say we think it's cancer. Once the doc sent me in an ambulance to the hospital and on the way out the door, due to all the bruises on my legs and erythema nodosum and nausea, the doc said, we are convinced you have lymphoma. Okay, at this time I had heard it so much that it didn't phase me. Once they found extra skin in my mouth and the dentist said, I am sure it's cancer. I was so mad at him. He did 18 shots in my mouth to take a biopsy...come to find out I having a sensitivity to the cinnamon gum I was chewing. The things we or doctors worry about are rarely the case, but it is up to your doc to rule out the worse, don't give that terrible job to your mind. Your minds job is to keep you calm and reassure you that all is okay. Let the doc worry today and say prayers it always helps me. It will be okay

For me every day is different, but mostly 1. pain,(migraines and neck and shoulder pain) 2. nausea 3. dizzy with strange feeling in my brain-like I'm in and out...fog is it? Hard to describe....I pick up about every other word if I get nervous when people are talking to me. Strange for me since I was a stage actress in college-nerves never got to me. Life is always changing that's for sure.

Potsgirll! Hello!! These are my odd reactions... I am having severe black outs occasionally and my face turns blue or sometimes a gray white and I'm completely soaked as if I just got out of the pool within a few seconds and i feel as if I'm burning up....and it feels like death is around the corner. I saw myself in the mirror when they were putting me in the ice cold tub. It was so scary-with my wet hair I looked that girl from the ring and I'm not kidding. I scared myself! I was in and out of consciousness. When I came out of it the first thing I did was look in the mirror and was so happy to see color in my face! They almost lost me a few times at the hospital. My neuro here thinks it could be dysreflexia-she says it's possible to have it without spinal injury. I don't know. I don't think anyone knows. A few times my blood pressure was at 30 something. And sometimes I feel pressure in the back of my head at the occiput??? That's only happened a few times. And during these episodes I can't lift my upper limbs or talk, only intermittently. My spine hurts a lot and so do a lot of my tendons and ligaments. Now, my muscles are stiffening up terribley. It's the worst it's been in ages, but the iron has helped a little bit. Anyhow...that's the odd stuff. MRI and spinal tap showed nothing and I don't have seizures...except a few when the blood pressure dropped to low. They said it was from the low blood pressure. Also I my legs welt up if I walk for too long. Mayo said they are at a bit of a loss besides the autonomic neurpathy...with possible autoimmune aspect. Hmmmm... Okay talk soon!

Liz, I'm sorry you are having to start from scratch. What a mess this can be. Hang in there. i had a thyroidectomy in 2009. I had nodules as well. You have to get an ultra sound. I think about 50% or some number close to that, whom are over 30, have nodules and in most cases it's benign. Unfortunately for me it wasn't the case. My regular doc didn't have a clue how to handle it...so see an endocronologist. I could not stand up straight for two years before they took mine out. It messed up my heart so terribly bad and blood pressure-I just found some old records from a few years ago where my blood pressure was 119/67 lying down and 156/88 just to stand up. I guess I had hypertensive something...anyhow, I still have a lot of problems, but getting that fixed helped a lot!!! And my thyroid was so toxic that it was poisoning my system. And never once did I have an abnormal TSH blood test. The doctors were a little shocked. So sad but true, at the time I was feeling like I was on my death bed and this one doc kept telling me everything was fine and would cut me off when I was telling him how sick I was and would say, YOU"RE FINE, but I knew better, so I went through all of my old labs and results from CT scans to blood tests for the past 2 years. And the nodules actually showed up a year earlier but they forgot to put that important piece of information in the summary notes at the end of the CT scan results. So I actually had to figure it out myself. All the doc had to do was to read the notes thoroughly to find thyroid nodules issue. When I brought it to the doctors attention, who said I was just fine for 12 months, freaked out and sent me to an endo immediately. I've never been back to that man! And what are the chances-after surgery I was sitting in my room so sick and bandaged up and that same doctor came into my room thinking I was some other patient-he looked like he saw a ghost and said, Oh I'm sorry, Maiysa, wrong room...I think that was God giving him a little lesson in.....listen to your patients when they tell you they are sick. Please let me know if you have any questions. Or just email. Have a nice evening.

Hey Julie, So sorry you're feeling blue. I acquired this at age 42, and I was going strong-having so much fun and loving my life. It was a blast. But life is never set in stone. And acceptance has been my biggest nemesis, but now we are friends...most of the time. haha. I am now going on my 6th year of this journey and still have a lot of unanswered questions and still a lot of feeling sick. I understand what you are saying, I miss my old life too. Sometimes when I wake up I think it was a dream and I never thought i would be living an hour to hour life of not knowing what's around the corner. If you are new to this it is a terrible adjustment. But I want you to have faith and know that it can always get better. I am having better days here and there and I cherish them so much..so much! and I've learned now that somedays...a lot of days are just going to...how can I put it elegantly...*****. But those good days keep my hope up. Every case is different and do your best to be inspired by the good stories-there are several out there. And for me God has done wonders for my spirit. Hang in there and keep hope and faith. Watch as many funny movies and sitcoms on the bad days...it makes it not seem so bad if we can laugh. Most of us, if not all of us, have been where you are-stay strong. Best Wishes and a Smile and a Hug, Maiysa

Hi Britishangel....be careful with the Nyquil. I think it is on the list of medications that can be dangerous for dysautonomia. Maybe you do okay with it....but I had a bad experience. I can't take anything, but Nyquil was the worst. Ugh....I hate not being able to sleep. So sorry for you. Mine is mostly hyperthyroid. But if I read something really boring...I can usually fall asleep. I hope you got some rest. My surges are usually in my chest and then go all over my body and I sometimes sweat, which is so weird since I didn't have any sweat on an autonomic test. And then I feel almost like a wave in my brain or like my heart is beating in my brain. That sounds weird I know, but it's how it is. PS Dani....have you had your thyroid levels checked? Just a thought. I hope you slept well.

Dani...magnesium sent me into a blood pressure whirlwind. My pressure was up and down and went to Quick Care I was so scared. but I lived. I took it for my muscles and I'm so sensitive that it did help my muscles, but it messed up my system terribly. I have something similar to what you are talking about and I get so sweaty and feel shaky and have flushing which feels like adrenaline. For most of the summer I had this, and just 4 days ago for no reason it stopped. Wish I knew what stopped it. Good luck to you! I hope you an feel well soon.

I was told I have autoimmune autonomic neuropathy a few months ago. But when I got my paper work in the mail, it doesn't say autoimmune. After talking to my doc at Mayo he says, he can't write it down as a definite diagnosis since no tests prove positive. So it's considered to have an autoimmune aspect and he also says I am having some unexplained issues that are yet to be discovered. I guess my husband and I are a bit confused. He was with me at the time of diagnosis and not sure how we missed it was a possibility. But anyhow, I'm back to idiopathic autonomic neuropathy. And am a bit bummed that some of the other issues aren't making sense. I also have orthostatic intolerance. Now, I have to go back to my primary, who thinks this is all non sense, and now tell her it's not autoimmune for sure. She says she has several patients who have this diagnosis and that it's not that big of a deal. She said, I'm just getting myself too nervous and causing the reactions myself. OOOOkay! I always say. So this will be interesting! Wish me luck and yes, I know I need to find a new doctor. But I can't drive most days and she is the only one close to me. This is basically a nightmare to get some doctors to take seriously.

sorry to hear you're not feeling well. I just had a doc appointment and he is doing a tryptase blood test and he said otherwise to test for mast cell, he would have to go into the bone marrow. Yikes. So we are doing blood test. But I truly don't know anything about this disorder, they are just ruling it out for me. feel better soon!

Hello Teacher4K, I had what they thought was hashimoto's, it is not set in stone because nothing showed up on the tests but I had all the symptoms. I also had toxic thyroid and unfortunately ended up with thyroid cancer which can take 10 years to show up, but not one single thyroid test showed anything. IT's so unusual, especially with three thyroid issues. The only way they were able to find my issues, which I'm not saying is the absolute case in your daughters, but they did a thyroid globulin AB, anti thyroid globin and T4Free and an ultra sound, where they found the toxic thyroid and other issues. Since I've had my thyroid fixed, it helped some severe issues I was having. But I still have a few, so it wasn't the end all be all, but what huge help to get it fixed. And don't worry about me mentioning cancer, that is not an issue for her, I just mentioned it because I had it. Very unusual for children to have that. So don't add that to your worries. And also be aware of the new normal for thyroid range. I've read that they are changing the guide lines. I can't remember what they call hypo now, but it's lower than the 5.5 that used to be the typical. Good luck to you! Hang in there.

Katybug, I just wanted to tell you that I just went through this a few weeks ago and the migraine lasted 12 days and I had so much pain all over my body. I was hysterical by the 12th day, so my doc did an iron panel and I was anemic. Now, I'm not saying that's what it is for you, but I have migraines all the time, but I never had it where I never had even a single day or a few hours of reprieve, so I knew something was wrong. Is it possible for you to be anemic? I hope that's all it is..such an easy solution. I took 84 mg. of iron with a buffalo burger-the red meat causes the iron to absorb 300% more and the iron from red meat is absorbed immediately, unlike other iron sources that can take days or weeks And within a day I noticed a difference and by the third day, the headache was mostly gone...as much as it can go away. WE took a blood test just 7 days later and by taking the iron with meat, my numbers were at least on the borderline normal, which helps a lot. Have you had your iron levels checked lately? My low numbers were not in my red blood count as much, but low low numbers in my ferritin and saturation level. Good luck to you. Hope you feel better soon. I hope it's okay to pray for you? And I hope you find the cause and fix soon! Maiysa

Hi Lynne, I did have the panel ordered by Mayo, but did not test positive. But was diagnosed as autoimmune. I was told that there isn't a test for every autoimmune disorder out there and it can be diagnosed on symptoms. I just went to the local neurologist who just received the information from Mayo and she said she totally agrees. I do have a lot of the autoimmune symptoms. But I can't take steroids because it will flare up the fungal infection from the valley fever. So I was put on aleve for inflammation-which I haven't been brave enough to take.(I react to all meds) But children's ibuprofen helps with my inflammation too. I also do Healing Yoga for Aches and Pains. It's yoga for whimps like me. And I found if I cut out gluten and eat healthier I can feel better. But it's so hard!!!! And every day I drink an anti inflammatory fruit vege blend smoothie with vitamin E and ginger. I eat a lot of anti inflammatory foods-salmon etc. You can look for the diet on line. Just put in anti inflammatory foods or best diet for Lupus or rheumatoid. I'm not cured, but it does help me to manage it. But somedays....not much I can do. Sorry I can't help you more. Good health to you!