bellgirl

Mine is severe, but I wouldn't call it sharp, but it's not dull either. It can be pressure or pain; Sometimes it takes my breath away or makes me short of breath. It lasts longer than I would like...hours at times. It's worse when I am sick with cold or flu, but can come at any time when I am symptomatic. I have arrhythmias and a Mitral Valve Prolapse, too...It's my scariest symptom. It feels like I'm having a heart attack!! But I'm still alive

This is me, too

I have a small corpus callosum and kyphosis...The corpus callosum is where the left and right brain hemispheres' nervous system connects, the 200-250 million nerve fibers...Most people with small ones, actually have major deficiencies in the brain. Not to offend anyone in the least, but I find it rather funny, since I have always had a scientific and artistic side, using both hemispheres equally...lol...and a higher than average IQ, when my brain fog isn't overtaking me, that is ...Food for thought, Sue. What you are saying makes perfect sense to me!! Incidentally, my husband has no sense of smell since he hit his head as a child, and loves tobasco, in referring to the article about the astronauts you posted!!

Jangle, this is just the nature of this illness, unfortunately, and as lemons said, I don't even have to be tachycardic to be symptomatic. I kept thinking that the beta blocker would solve all my problems. Most of the time it does keep my heart rate down, but when I'm exercising it can still go up and down, at night my blood pressure tends to be a little low, and when I wake up, I will get adrenaline surges, so this is not an exact science...I have GI issues too, that seem to be associated but then catch me off guard. I am definitely more symptomatic all around when I am dizzy, and I can't take a lot of motion, especially in the car, so I avoid doing too much in one day. If I can do one thing a day, I'm doing well

Not always...Sometimes I'm very lethargic, and I don't feel like doing much at all, but I'm always glad when I do go, because I believe it helps with the pooling, and always helps me to sleep better. I only go twice a week to do the elliptical for about 40 minutes, (started on the stationary bike) I know I should go three, but I also walk my dog short distances, about 15 minutes a day. If it's not a good day at all, I stay at home. If I push myself too much, I suffer the consequences, but there is a balance, too. No exercise is even worse, so I try to listen to my body, and play it by ear (no pun intended), since I can be dizzy, too . I seem to think that the more exercise you do, the stronger your muscles become, and then you are eventually able to do more activities, as well. Just do the best you can...it is good to get some exercise; keep it going. It's great you've done well for persevering for 3 months. Keep up the good work!!

My internist did my Myasthenia Gravis test, acetylcholine receptor antibodies at my request. It really depends on the doctor. She also checked my blood chemistries, and for vitamin B deficiency. My neurologist this time, tested for tumors, aneurysms, MS and Lymes and other autoimmune diseases. Years ago, I had a rheumatologist who did several autoimmunity tests, too. I have many allergies, used to have an allergist, had desensitization (allergy shots for 4 years), but now my internist also takes care of that for me, too! So sorry that you had this experience...

Used to have this all the time...I think it went along with the rigidity, spasms, etc. and when I was more symptomatic...My medications really help with this, and it is not as much of a problem anymore. My muscles are more relaxed, and I'm not as tight, or tachy either...Ask you doctor about this. I hope you start feeling better....

My goodness...glad you are going to Vandy. Very good Medical Center. You should definitely find out some answers there. Praying for you!! Low potassium is nothing to fool around with. It could stop your heart from beating. Glad you had caring nurses, who were looking up things with and for you Also glad you are feeling better, too!!

Sorry, Kayla, I didn't see this post until today. Did you ever get the results for the gastroparesis? Sometimes the vagus nerve can cause trouble with swallowing or it could be GERD. Are you able to drink fluids? Make some protein drinks or drink some Boost for some nutrients. Chocolate is the best flavor...it has to be cold to be palatable. People used to think I was anorexic, too. I love to eat, when I can. It will be OK. We know your not!! I hope you are feeling better...

Rich, I think you are on to something here. Could you be having blood pooling in your lungs, which makes it hard to breath? I have had the chest pain you are talking about, and I notice it more in the evening when my blood pressure is lower, hence blood pooling, which makes it harder to breathe. When I coughed up a lot of blood that time after running with my dog a short distance, in 2004, it was in the evening, and I wasn't paying attention to how I was breathing (before my diagnosis, before a lot of other symptoms). It could have been blood pooling then, that I was unaware of at the time, which made it harder to breathe, together with a bronchospasm due to my asthma. The doctors never had an explanation that made any sense, bronchitis?!...I don't think so...My chest pain doesn't seem to be as bad with my Cpap for my apnea...maybe it is because I'm increasing my tidal volume, causing better perfusion and oxygenation to my lungs!! I tend to hold my breath without thinking sometimes, too. Wonder whether it could be compensatory. Thanks for the idea

Thanks Anna...this explains me, too, and my grandfather died at 46 without meds and my father died of a stroke at 71 on meds!! So Issie, be careful...I wouldn't get off all meds, if I were you... maybe some of the herbs. I'm concerned for you... I would have a stroke, if I did that...I've already had stroke like symptoms in my early 40's, and I'm doing everything I can to stay alive a bit longer to see some grandkids!!

I thought you meant twice a week, not every other week, sorry . I wish you the best with your treatment! I have hypertension and have had some fluid retention, previously, and am on some medication for that also, so this is not an option for me. I guess dehydration is a way of life for me. I just drink as much as I can, balance my salt intake, and try to avoid bladder or bowel spasms!

Are you going to get a port put in for the infusions? You should maybe talk to your doctor about this, as your veins will wear out after a while, constantly being pierced, and sometimes being blown or infiltrated. I have a vein in my left arm that rerouted after I had a blown IV after my C section. I used to take care of the chronically ill, years ago, and those who would have a lot of IV's, began to get ports inserted in their chests for a central venous line to avoid all the needle sticks; they are also great for those who are dehydrated in emergency situations. Just asking

I have parasthesia and neuropathies in different places in different ways. Just the other day I had buzzing in my cheek; used to have it in my head all the time. To be honest, I just chalk it up to my dysautonomia. I've had burning, tingling, squeezing, electric shock nerve pains, heaviness of limbs, weakness, stiffness and rigidity, etc. I used to have a lot of fullness in my head with head and neck pain, too, but since getting treatment with medication, my symptoms have been so much better. Weird symptoms were always pretty common for me, and I've learned over the years (13 to be exact), that it was related to my "problem", which was just diagnosed last year. I thought I had MS for years, but that's been ruled out, and I'm very glad about that, but I learned to accept it, and take it in stride. I have to admit when I coughed up a lot of blood, though, in 2004, I was somewhat concerned, but now I know it was blood pooling, because of the dysautonomia, too! All of these strange happenings were this disorder, so I am relieved to finally have an answer and treatment. Especially for the dizziness/vertigo and insomnia!!

Could be considered a Valsalva Maneuver, depending on how you sneeze, which temporarily can reset the ANS. Are you holding your breath? Also the vagus nerve is also affected in ANS disorders; now they have Vagal pacemakers for those with uncontrollable seizures, interesting...You just sparked some more medical research ideas for me...I'll be looking into it...

I had some ear issues the last time I flew, but it was the ear I had previous surgery. A lot of pain and pressure in my ear, and was more nauseated and dizzy the day after (almost vomited the next morning), but this was before I was diagnosed with dysautonomia, and on medication and treatment...

Had colonoscopy with general anesthesia, because of my health issues, and GI troubles, and did fine, actually; Just slept all day and all night. It wore me out!!

Just being honest and open makes all the difference in the world. In this life, there are so many issues in relationships, anyway, and with us, it is magnified, but just taking the time to really talk can really help. Glad that you were both able to see life from the others perspective...that's huge!! Joy, Kim "Hugs" to all

I love all kinds of music, used to dance, still sing ...and like Issie, I would date myself, if I started mentioning specific tunes, so I'll just leave it at that....

Vertigo and dizziness were my middle names for 3 years. After all the Vestibular tests known to man, it's my ANS, only!! Clonazepam helps with dizziness. I only take a small dose at night. I still have some dizziness and nausea especially in the car, and some days are better than others, but I have to say, I am much improved. I'm also on a beta blocker for my tachycardia, and I exercise regularly on the elliptical...started on the stationery bike when I was still dizzy, and I held on tight. Haven't had any bad vertigo (vomiting and bedridden) for over a year now!! I am so much better. Medication for me has made a world of difference!!

Men are completely different than women, not just with the sexual issue, either. They were created differently for a reason. Learning your spouses "love language" is very important. Doing simple things to make your partner happy is important, too. My family and friends don't completely understand or empathize in the way that maybe they should with me and this condition, and that can be frustrating at times, but God understands all we are going through, and He is by far my most important companion in this situation....I wouldn't have survived 13 years without treatment otherwise!! Issie, thanks for the tips...So sorry Leigh, Kala and Blue; this isn't easy...especially for you younger ones!! I will say a prayer for you...

Go for it Dizzy, you'll feel better in the long run. As long as I could hold on to something, I was OK. My main symptom was dizziness/vertigo (with tachycardia), when I was finally diagnosed, so I know how that can be!! I started on a stationery bike. I am alot better with my medications now. Not as dizzy as I used to be. I'm not saying I enjoy it, but I make the most of it, because I need it to stay healthy. I like being outside with my dog more than being in the gym. Thanks for the compliment.

I'm like Sue, no desire, but I don't withhold either...Cpap machines are not to sexy either...lol...but my husband loves me and I love him, and that's what's important. The older you get, the more you will realize that is what is most important in a relationship!! Being good companions is imperative in a marriage. The funny thing is that I used to have the opposite problem, which was great for him!! So things have changed a lot. We've also been married 30 years ; Menopause leaves one rather dry, too, which doesn't help matters, but there are products to help with that, too!! Listen to Issie, Jen; you definitely need to talk with your husband about this! And Kala, flushing is not uncommon, but you shouldn't be scared by that either; it's just another form of exercise!!

It's very difficult to get a proper prescription at the eye doctor with this symptom, but it is very common with a lot of us. Pupillary dysfunction is part of it, but I also believe that it is mainly a circulatory issue to our brains, because of dehydration and blood pooling in the lower parts of our bodies. I also have a binocular defect, which means my eyes aren't aligned properly, so vision has always been a major issue with me. I just don't see very well, but when I saw a blind person the other day, I was grateful for the vision I do have. It was one of my first symptoms of dysautonomia, and it scared me, because I thought I had an ocular aneurysm! Sometimes a little bit of knowledge can be a dangerous thing...lol. My neurologist thinks I could have had optic neuritis that caused this...I am blessed that it isn't any worse...

We need to listen to our bodies; we have good days and bad days no matter what...Don't overdue, because you will suffer the consequences!! My heart rate is all over the map when I exercise. I've gone from 50's to almost 200 beats/ minute, while on the elliptical, and of course, that causes symptoms...I just keep going; if it's a bad day, I only do 2 miles, if it's a good day, I try for 4. I usually only go to the gym twice a week, so I won't burn out. I walk my dog short distances every day, though. I have done a lot of different exercises over the years, tried just about everything, and I know my limitations, especially now. My ANS doctor said I was in the best shape of anyone she had ever seen that was just diagnosed with dysautonomia, and that is because I am determined NOT to let this overtake me!! Even when I was so sick, with insomnia, tremulousness, nauseous, and tachycardic, if I didn't exercise, I was worse, so I would start up again!! I am very driven, and nothing will keep me down...Attitude is everything...I choose to be as healthy as I can be