bellgirl

Medications have made me functional...I was so sick without them...I am able to exercise now, and I'm able to sleep. You can't live without sleeping properly or exercising to be as healthy, as possible. I'm hoping to gain some weight, too, now that I'm not as tachycardic, my b/p is not as erratic either. I never thought I would say this, but if they improve your quality of life, it's worth it, even being dependent on meds I always said I wouldn't be an old person on too many meds...lol...never say never!! My medical knowledge has helped me make good choices, and allowed me to know what doctors I can trust, and that is a blessing. Life is full of surprises, and I'm doing the best I can in God's strength...

It is always good to get validation and treatment, for the doctor's to listen to you, do the right testing, and for you to have a witness...God made sure of that Vandy has a good reputation...any Medical Center or teaching facility for physicians will have the latest of treatments. Glad you were able to get some answers!!

I don't think they can check for Lewy bodies with an MRI. My doc said it can only be found with an autopsy and I don't want to be in that state to see if there are issues with that. LOL (It can, however, look for lesions that would indicate MS.) I still have spells like what you just described. There are times when I can't pick my legs up- they are just frozen. I also have severe muscle weakness at times and can't get up out of a chair. My loving hubby has to pull me up. Then there are also times, when my legs won't pick up to get into a car - mainly when I've over done it with walking too much or being upright too long. With Lewy bodies there is also motor function issues - like with speech, movement etc. (I do at times have symptoms of this.) But, that can also be symptoms with MG. I think until things present, so conclusively - there is no way we will get the answer to these issues. I've had these issues for years and they vary in their presentations and intensities. It is also thought that I've had at least two TIA's. So, who knows what's going on? NOT ME! I don't think I need an autopsy yet...lol...before I was diagnosed, I always thought I had symptoms of MS (Neuritis, parathesia, etc.) and MG (muscle weakness, droopy eye lids, trouble swallowing), but was tested for both and they were negative. I read that those of us with neurological symptoms have a 44% chance of Parkinsons, but my neurologist said no...My neurologist said my brain would be lit up like a light bulb after 13 years if I had MS, but never had a spinal, either, though. I have hyper reflexia especially on my left side. He is curious about that, and I have a binocular defect from some unknown disease process that can't be corrected surgically, because I'm an adult! Diagnosed 18 months later by an optometrist. My neurologist told me I could have had optic neuritis without having MS, so since at the time, I couldn't get into a doctor (specialist) for 2 months, my eye doctor sent me to get an MRI, because she thought she saw inflammation. I also believe I had a mini stroke, when my eye was misaligned by a virus years ago, with neuralgia on my right side. I've also had slurred speech before upon waking...Of course, also not detected on testing...They could never give me a reason for coughing up a lot of blood either, one night after walking my dog...bronchitis...I don't think so...so what was the mass on my lung scan, anyway!! Like I have said before, there aren't always answers to our questions. But God knows, and to me, that is enough! At least I have some treatment now, better doctors, and can be functional. Doing the best I can only with His help

I actually thought I might have a tendency for Parkinson's at one time. Sometimes I find that I am stuck in one position and can't move, and then I fall to the right or left. It's embarrassing more than anything else, but it is a concern of mine. I know my MRI doesn't show any Lewy bodies, so maybe it's just the dysautonomia. So sorry you are having a bad time with your mast cells...I will pray that your depression is lifted and maybe the saffron will help! Thinking about you, and understand that some days are just that way even when there is no explanation Sometimes it's just frustrating....

Bystolic has decreased my heart rate to almost normal levels, but I have to admit, I still have surges on occasion, but at least most of the time, I'm a lot calmer. When I went off Atenolol, which made my heart rate and blood pressure too low, I actually had a physiological anxiety panic attack, but when I was put on the bystolic, 3 days later, I haven't had one since!! It is one of the newer beta blockers, and it is cardioselective, which means it doesn't affect your breathing, if you have asthma or other breathing issues, like apnea. It also has a longer half life, which makes it effective longer throughout the day! I take it before going to bed so I don't get too sluggish during the day. It's changed my whole existence; I am able to do more, with less fatigue...I'm not as tremulous either . Medication can make you more functional. It's up to you...and your doctor.

I have swelling in my hands and feet and ankles at times. I am on a diuretic for the ankle swelling, which is worse in the summer or if I have been standing too long...

I was 54 when I was diagnosed. I, however, had symptoms for 13 years prior to this, so I was 42 after a virus with major symptoms. I came close to fainting several times when I was younger, though...so I learned to compensate at an early age, and with medical knowledge, as an adult.

I am sorry about this for you ; He may only be able to help with the Cardio issues; if you read the posts here, everyone on this website has some sort of pain. I have nausea all the time, too. This is a condition of the autonomic nervous system, and it affects all the body systems. Why would a doctor say that nerve pain isn't a part of this? It's hard to believe that he said that. You need to be tested for Fibromyalgia, Sleep apnea and Chronic Fatigue. You need an Autonomic Nervous System specialist, even if you have to travel longer to get to one. My good doctors are 2 hours away for me. I would also get tested for Sleep apnea at a reputable Sleep Clinic, and possibly find a Rheumatologist for Fibromyalgia and Chronic Fatigue!! You need to find a doctors, who will give you the proper treatment. Let us know how it goes...

Very good news!! So happy you were able to have the energy to exercise, that is definitely the key for well being. I take Magnesium and B complex, but I'll make a note of the others. I've considered Co Q 10 actually...very happy for you

Foolio... like the new word!! Gotta keep our sense of humor Bystolic helps, but I am still symptomatic at strange times, erratic heart rate when I exercise, maybe because of the decreased pooling during activity, flushing or adrenaline rush when I wake up, or at night when I'm tired, I can be tachy, heart pain or tremulous, too. All in all, I am much better, especially in the afternoon; not as dizzy, on clonazepam. I can sleep, and that's imperative

Boy, can I relate to this....I even had a colonoscopy, had just one polyp, (thinking I had bowel cancer or kidney stones), because of it...I was dying with it for a month or so, and I had experienced it on and off for several years before, without yet having my diagnosis of Dysautonomia. I also finally noticed that it was related to peristalsis in the bowel. I have urogesic blue for bladder spasms, and because it is a smooth muscle relaxant working on the sympathetic nervous system, I tried it, when it rared it's ugly head again, and finally was able to get relief, but it took 24 hours. I would definitely get some GI testing done, just for peace of mind. I eat yogurt with active cultures, and it doesn't happen as often or as long anymore. My heart goes out to you...it is awful...Prayers

Anoj...I would do everything possible to get to a doctor for treatment. Medication has improved my quality of life, immensely... I was doing horribly for 13 years without treatment. I shouldn't have been driving at all before treatment, because of my vertigo, dizziness, and running into curbs, etc.; now I am driving short distances, I'm a lot less dizzy and tachycardic, and I'm able to exercise again, which is so important for your overall health. Even if you have to go by ambulance, it would be worth it. Do you know anyone with a van or a truck, where you could lie down and prop up your feet? They do have medication for motion sickness, too. Some have suggested the scopolamine patch before, but they are on back order, (according to my pharmacist), so possibly another medication, so that you are able to get some relief while traveling...

Thanks for clarifying Firewatcher; I don't feel like I'm addicted to anything. I've always been very careful with medication, knowing, as a nurse, what drug addicts are like, and how sad that can be. I was resistant at first to take any medication, but I was, also, literally, dying, NOT being medicated after 13 years of being undiagnosed. I have a better quality of life. I tried a lot of herbal remedies over the years. If I had only relied on those for my hypertension, I would have literally died of a stroke before I was 50. My grandfather died at 46. My father was on antihypertensives including beta blockers, and he lived until he was 71, and he had a cerebral aneurysm at 59, (miracle man), so some medication can give you 25 more years of life. I am my father's daughter, and I plan to make the most of my life!! If it includes drug dependency, than that's is alright for me. I would like to spend some quality time with grandchildren some day, and I wouldn't have that opportunity otherwise, so I am happy with my treatment. Rama, Have you ever looked into TENS treatment for your pain? That actually blocks the nerve... Shoegal, I'm addicted to cinnamon...Just kidding ...Are you addicted to shoes...lol

Red wine is supposed to be good for the heart, but it is a vasodilator, and it is also a diuretic, which causes the kidney's to work over time, (diuresis), therefore, eventually causing dehydration!! I wouldn't overdue it...everything in moderation is my motto . I used to take Hawthorn for chest pain...I woke up with pain this morning....Does anyone wake up with chest pain? That seems to be normal when I am working out (which doesn't happen), but I have pain in the cold, vasoconstriction, during a symptomatic phase, and when I wake up...during a surge, maybe??

I've been on clonazepam, which is Klonopin for six months. It was prescribed by my autonomic dr. for my shakiness and insomnia. It helped immensely with my tremulousness and dizziness, too. My sleep apnea doctor told me I could take it for the rest of my life without adverse effects. I only take it at night. It has no side effects for me, other than making me functional, so I choose to continue to take it. I am a nurse who would rather not be on any medication, but sometimes, it is a good thing to be getting treatment. Just saying...

I've lost 10 pounds in the last year...after treatment for 6 months, I'm about the same. I thought I would gain some back, but I haven't. I gained some through menopause without meds, up to 120, I'm my best at 112, but I only weigh 104. I'm 5' 5''. I'm below the weight I was when I was a young adult , 25, newly married. That was 30 years ago!! You would think I would have gained being on a beta blocker, Bystolic. That's what I thought, anyway, but I'm nauseated all the time, so that is a factor, and sometimes have some GI issues...

Dizziness because it prevents me from driving to see friends and family....I'm using pressure bands for nausea...we'll see!! That's my second . But to be honest, I am grateful to God for every day I have to spend with family and friends that are close, and am glad that I can get out of bed. I know some that are bedridden and home bound with this every day!!

You need to go!!....I just got back from my son's wedding. It was a 14 hour round trip. I didn't drive, but stayed hydrated, stopped every couple of hours to walk around. We stopped 3 times, and even though I did pretty well during the whole weekend, I was home bound for several days after to recover. It was worth every moment Don't let it stop you from living your life...There is another topic on things to do for motion sickness before you go, too. You need to check it out.

Thanks, Anna, for posting this. Very interesting. Stevia is also a natural sweetener that comes from a plant. All sugars can cause inflammation within the body, which can lead to many different health issues. It is important to have protein to counter sugar in the diet, since it is impossible to avoid it all, since starch (pasta, corn, rice, potatoes) and fruits, (fructose) are also full of different forms of sugar, too! It's one of the reasons I take Flax seed oil. It helps with inflammation.

I agree with Issie. It is imperative that if you have this, that you use your cpap. I am convinced that yes, obstructive apnea is bad enough, but with dysautonomia we have more of a chance of having Central Nervous System apnea, which to me is a very dangerous situation. As she said it is possible that we could stop breathing all together. Actually, the average size neck for someone with sleep apnea is 16 inches, but my neck is 11 and a half inches!! So size doesn't mean a thing. My sleep doctor told me there is no such thing as a little apnea, either...it is a serious issue, that needs to be treated for those of us who have it.

I suppose that's worth a try...Thanks

Glad you are at a great medical facility. I hope all goes well for you there, and you get the treatment you need

So sorry...this is a major problem for me, too . I haven't found anything to help that doesn't make me sleepy, so if I drive, it's only 5 minutes away. I've never tried the patch before, but heard of it...does it make you sleepy?

I have a Mitral Valve Prolapse, and I know I have irregular rhythm at times, although my 24 hour holter never picked it up, so I guess I had a good day. I actually have a B/P monitor that picks up irregular heart beat, and every time it happens, I can feel it, and every time I am at home, I take it, and it says I have an irregular heart beat. When I was going through menopause it was worse, and I just thought it was palpatations from that....lol They are not as bad, since I've been on Bystolic, but they still occur. The autonomic nervous system can affect the electrical system in the heart, as anywhere else in the body, so it is no surprise to me. That's why some with severe Dysautonomia need to have pacemakers and difibrillators put in, to regulate their hearts. A Mitral Valve Prolapse is the regurgitation or leaking of the blood back into the left atria from the left ventrical, because of a malformation of the mitral valve. It can cause dizziness, fainting, visual disturbances and fatigue. Most people are asymptomatic, but those of us with this diagnosis, and dysautonomia have the symptoms. Some doctors put you on blood thinners, as well, to potentially stop clotting that can occur because of it, which could lead to a stroke. If you have it, usually you are put on antibiotics prior to any surgical procedure, as well.

I believe it is a neuro symptom...involves the nervous system and muscles. I see you have fibromyalgia. I believe that this could cause this, too. I have had this happen to me, as of late, too, and just figured it was related to the dysautonomia...I've had it in other parts of my body, as well. Do you have flushing, too? My temperature sensor has always been erratic, too, but that could also be the tachycardia, too! It's like running a race sitting down...lol