bellgirl

Are you holding your breath? Sometimes we do this without even thinking about it. Try breathing slowly through your nose, while you eat. You could be experiencing pooling in your stomach and your lungs at the same time. I also at times have trouble swallowing. Are you on a Beta Blocker? You may want to talk with your doctor about decreasing the dosage, if you are on one. When you are standing you can be more symptomatic, as well. I sometimes sit in the shower, and wash my face sitting, as well...

Mandy...you know I am praying for you!! Try eating small amounts at a time...very light foods, no meat...possibly rice, fish, bananas, eggs...nothing heavy, no milk products, but maybe yogurt, if you can tolerate it...some cooked veggies, fruit juices, ginger ale...some suggestions on the things that I eat when I'm nauseous...smoothies, too!!

Rama, if the Mestinon doesn't end up working for you, my neurologist is trying to get Provigil authorized for me for fatigue. He gives it to his MS patients, and my ANS doctor also has prescribed it before for dysautonomia patients, so I'll let you know how it goes...if it gets authorized by my insurance company, that is!

Can you PM after a week to let me know how it works for you? TY, Rich Right now they are trying to get authorization through the insurance company, so it could take a week to get it approved. It is usually used for MS patients, but my ANS doctor has prescribed it, as well for her patients. I may have to get her to prescribe it instead of the neurologist. Oh, the hoops we have to jump through...maybe I should say fall through...lol I'll let you know! Kim

No, it doesn't help with tachycardia.

Rich, I gave credit to my Dysautonomia Specialist (Cardiology), but I love my Neurologist, too, and he just prescribed Provigil for fatigue. I just started a topic on it a few days ago. It is a medication he uses for MS patients, and my ANS doctor said it would be alright to try it, and said she has used it before for other patients, as well. She may have to adjust my BB, too. It is usually given for narcolepsy, but is also supposed to be good for those with Obstructive Sleep apnea, (breathing issues), anxiety, depression and irritability, too. I will get the prescription this week, because my neurologist was out of town the day after I saw him, and let you know how it goes.

Puppy, you could be having spasms in your colon. I had such horrible pain with that last year about this time for a whole month, that I thought I had colon cancer, but I didn't . I had it on and off every year in the Spring for the last 4 years. I had some medication for bladder spasms, that my doctor prescribed, Urogesic blue, and since the colon is also a smooth muscle, it worked wonders after about 24 hours. Also getting a colonoscopy cleaned me out...talk about major diarrhea...but that helped, too! Just ended up with one polyp. I've had major gastritis, and GERD, too, so I feel your pain. Talk to your doctor to possibly get something for spasms. Prayers for you!!

This is interesting...I have a nephew with Aspergers, a niece with OCD, and I believe I was OCD, along with my brother, when they didn't diagnosis this way back when!! My brother and I also have MVP. I think I would have been considered hyperactive, too! Maybe attention deficit disorder, too (ADHD), which my nephew also has, btw...lots of nutrients in that colostrum, Issie...that is the first milk a baby gets from their mother, before the actual breast milk. Love all the info on this site

That's good...Duke is a wonderful Medical Center, and it's not because I am biased, because I worked there as a nurse. They genuinely are the state of the art, medically speaking, on top of the lastest and greatest...any teaching medical facility will be like that. They fly in patients from all over the nation. They are known for their success in diets (mostly for the obese), but great knowledge on nutrition, as well, and I used to help with patients with reimplantation of limbs that had to be reattached after traumatic injury. There were a lot of children with rare chronic illnesses there, too, so I know you will get the best of care there!! Let me know how it goes...

It is also used for patients with Obstructive Sleep Apnea, depression, anxiety and irritability...I have sleep apnea, so maybe it will help with this, too!

Forgot my GI, and GU issues, as well!!

Vision problems, shortness or breath, neuralgia, other nerve issues, heaviness of limbs, high BP, swelling of ankles, coughing up blood, vestibular issues, ear surgery, imbalance, (injuries), irregular HR, temperature sensitivity, dizziness and vertigo. Omgosh...this is truly ridiculous . Oh yeah, I forgot the most important one!!...I knew something was wrong with me physiologically, and I knew I wasn't crazy.

Kayla, Glad things are going well with your IV infusions and your port. Sorry that you are having lots of dysautonomia symptoms right now. I'll say a prayer that the doctors will make wise decisions regarding your care and that you get the treatment you need, when you need it, and that you get to feeling better. I'm here for you. Send me a personal message, if you want to talk

I would say the Advil is the biggest culprit. I also had horrible gastritis on Zocor, too, and was on Prilosec. If you try to get off the Prilosec eventually, I would talk to your pharmacist about weaning off of it. Heart burn will be worse going off of it cold turkey. Sorry that you are also trying to get off Klonopin at the same time; that's got to be awful!! You are getting a lot of good suggestions for natural remedies, and I am glad you are finding some foods that you can eat...I'll say a prayer that things get better....Obviously, stay away from anything acidic, which includes a lot of fruits...eat veggies instead. With all that oatmeal, potatoes and bananas, you may find yourself constipated, so you need a balance!! Yogurt is great... Drink plenty of fluids...ginger is wonderful for nausea. Chicken soup is always a good food when your not feeling well. Hope you get better!! Prayers...

This is great news Jangle...it works well for me, too!! Hope your "Off balance" feeling improves. I still have this problem, and I have just accepted it as a part of the dysautonomia that will always be with me...it's amazing though, how our bodies do learn to compensate. I am not as nauseated as I used to be either, because of the dizziness, which is much improved. I'm still not good in the car, though. I actually wear the motion sick arm bands (acupressure to the wrist), though, and I believe they actually help me, if I am in the car or on the elliptical!! Wow, I'm impressed with your exercise regimen, too!!

You know how they say that a lot of people are like their dogs...well, Windy now has Vestibular Disease, so instead of calling her Windygirl, I now call her Windywhirl; It is pretty funny watching a dizzy Kim taking care of a dizzy dog with all the rocks on the side of the mountain behind our home. It's a wee bit dangerous, I might add, and she has head tilt to the left as well!! Nothing like mega sympathy from her master. She is almost 15...the good thing is, she wasn't having seizures or a stroke, like I originally thought...thank God for that!! I had to laugh, though. Can you believe it...lol...I promise, this is a true story. God does have a sense of humor!!

I've been a fish enthusiast for years. I have a 55 gallon right now with cichlids, and a few gouramis...I've probably had every fresh water fish known to man...lol. Used to have a Bala shark I nicknamed "Tap", because he used to tap the bottom of the tank at night!! Had another Columbian shark that would literally eat out of my hand, but one morning I sleep in, and he jumped out of the tank; I saved him once, but he started to make a habit of jumping, and you can figure out the rest of that story...I love my fish, but like songcanary mentioned, cleaning the tank is not my favorite thing to do!!

From what I understand it is usually given to patients for narcolepsy, but my neurologist prescribes it for fatigue for MS patients and has had great success with it. Alot of my symptoms mimic MS and my ANS doctor was all for it, and says they use it for dysautonomia with good results, as well, and she was willing to have me try it even if she had to increase my beta blocker just a bit, to improve my energy level and quality of life...thanks for your posts, and Corina for the article. I will look it up! Just curious if anyone had tried it. Sorry Thankful, that it didn't work well for you...we'll see. I'm willing to try it...can always take myself off of it. Right now my insurance is good...I hate being on meds, but so far, they have helped me so much. I'll let you know what happens...Thanks again

My neurologist is putting me on provigil for fatigue after checking with my ANS doctor. I may have to have my beta blocker increased to balance everything. We'll see...Is anyone else on this medication? How did it work for you? I won't get the prescription until next week, since he is now out of town, but I'll keep you posted Joy, Kim

Welcome Kari...I have a sister in Reston, Virginia!! Wish you the best. This is a great site for dysautonomia information...one could spend hours researching!!

Thanks Katie, this is interesting...

Talked with my neurologist about the Parkinson's again, Jangle, and he says not to worry about it...He is amazed though how similar my symptoms are to MS, though, which doesn't surprise me, because for 13 years that is what I thought I had...I will get another MRI in 6 months, unless I need something sooner. Being put on Provigil for fatigue. That seems to be my biggest issue right now in this roller coaster ride

Very interesting, Anna. Did you know 7 is the perfect number? I guess that means we are perfectly made I asked Dr. Riser, why I have nerves growing on the outside of my body?! My neurologist just laughed with me, on this one! Certainly I don't have "Elephant Man" syndrome, but type II lacks merlin protein, and is a genetic defect, and I just found it interesting.

I was crying without reason on atenolol...uncontrollably, I might add. But don't fret or give up; you maybe could try another that is longer acting. Talk with your doctor... I did, and I'm a new person on Bystolic. Not as tachy ...and more functional!

Well, I just received a phone call this morning with my biopsy results...it is an encapsulated neuroma. This is a benign tumor, but it can continue to grow, since it has vascularization and nerve involvement, so I will have it zapped with electrical needle on my next appointment. That sounds like fun...lol. Interestingly, though, I am now wondering if I could have Neurofibromatosis type II, which causes benign tumors inside and out following nerve pathways. Could that be the cause of my vertigo and dizziness...or all my Autonomic problems?! Will talk to my neurologist about it on Wednesday. God has perfect timing