bellgirl

I have floaters and corneal issues, because of constant dehydration, hypovolemia, which causes severe chronic dry eye. I was put on erythromycin ointment for bletharitis, which is inflammation of my eyelids, and preservative free tears every hour for my dry eyes!! I would do a whole lot better with an IV once a week, especially in the summer.

Michelle, Sorry, I haven't been on line in a while...I find that the baby shampoo is helping, and definitely the preservative free tears. My eyes feel so much better. I am wearing glasses at present, but may have to get special contacts that hold liquid on my cornea, if at all. I am not tearing all the time the way I used to either, so it's a definite improvement!! Let us know what your opthamologist says...but those of us who have dysautonomia have a myriad of eye issues, anyway, unfortunately. Kim

I personal messaged you, Amanda. I think you will like Dr. Phillips. She is very competent, and you will receive good care there. Let me know how your appointment goes. Do you have a good Primary Care Physician? You will need one of those, too, so you can get referrals in your area. Most of my doctors are in Birmingham, but I'm happy with all of them. It is about a 2 hour drive for me, and my vision has been lately, also I get motion sickness, so my husband has to drive me. Now that I am more stable, I don't have to go as often, until lately with my vision, but as I said in my message, it is improving some. I hope your appointment goes well.

I have bletharitis, which is the inflammation of the eye lids. I currently am taking erythromycin ointment at night, and cleaning my eyelids with baby shampoo at night, too. I also have severe dry eye, and fragile corneas, so I take preservative free drops, supposedly every hour, but I forget a lot. I have been tested for Sjogren's, which was negative, but no one ever did a lip biopsy, which is the most accurate way to test for it. I may have to be put on Restasis. Since we are chronically dehydrated, this doesn't surprise me. I also get lip infections, which is weird, but nothing surprises me anymore. I went to a corneal specialist, because I couldn't see well at all to drive, after going to a neuro- opthamologist, who couldn't see my retina through my cloudy corneas!

Great job!!

Stretching is key, too, so yoga, MarkA, is great for that. I've always been extremely stiff, even before my diagnosis...I used to go to a class, but I also do the elliptical twice a week, walking my dog, and it ended up being too much, and then I ended up with tendonitis, so I have to be careful.

Have you been tested by a Rheumatologist? You could have something else, such as Fibromyalgia or RA...I would look into it. I'm on Gabapentin and it helps with the soreness. It's almost as if I have the flu, but I don't. It's actually nerve pain for me. I have Fibro.

Sorry, Bustersacc11, I'm just repeating what I have been told from another who went there who I know, and they didn't offer any treatment, and told her that she would have to find a doctor elsewhere for treatment and that they only did diagnostics and research there. It's happened to several on this site in fact. You must be special. Do you live in Tennessee? That might make the difference....

Issie, I am still very happy with Dr. Susan Phillips in Birmingham. They only treat the dysautonomia, not other problems that go along with it, though, so she would need to see other specialists, too, but she is very knowledgeable about treatments, meds, and if you need blood work, they do that too. They told me to take my B/P med I was already on before testing, although I wasn't on a Beta Blocker at the time which definitely would effect heart rate on a TTT. She started one med at a time, so she could see the effects, and now I am so much more functional.

All my ear tests were strange (dysautonomia) but normal.

One time after a virus, I had to have ear surgery, because my eustachian tube shut and wouldn't reopen. I have trouble with pressure changes, and I have constant tinnitis.

I'm a nurse and developed an assessment form for pediatrics years ago that included it, so that if anyone had it at night, the nurses would be alerted to it. My son has it

Both Soy and Corn are GMO, and Soy is in everything under the sun that is processed!!

Issie, I'm glad you are being careful about your protein intake! I was concerned about you Joy, Kim

Glad that you went to the doctor, and came up with some problems to address, Tachy. I may go to a Cardiologist, for a workup, because some times I do get short of breath, but I'm not too concerned; just getting older and want to make sure that I take care of myself in other ways, that can or cannot be related to dysautonomia. I have some teeth issues, because of a vitamin D deficiency, and I also have some corneal problems that will be addressed on Friday. It is scary having some of the symptoms we have, especially as we get older...so I understand your concern, really

Glad it's working for you....I would be a little concerned with a pregnant woman on this diet, because of low folic acid, B9, B12, and iron, which can cause neural tubal defects, though. I know you are not in that category, Issie; Just make sure you are getting enough protein from other sources , like beans, nuts, raisins, etc. Are you on no dairy? How about eggs and chicken?

This was me, all last night...I just had a tooth pulled on Friday, so of course other factors are at stake here. Hope you start feeling better. Prayers!

I don't want to scare you, but my dad had an aneurysm in his brain when he was 59. So it is possible, especially with a severe headache. He survived it, and lived 12 additional years. So I would call an ambulance, if I were you, but only you know how you feel...they always test me by MRI, but I know one day it will happen to me, as well. I'm just being realistic. I'm 56, so the clock is ticking. I'll pray that you make the right decision!

She's on my mantel now. I have her ashes!! I also found a cement statue that looks just like her. She was a white Schnauzer....I rescued her from the shelter, and loved her. She was about 7 when I got her, and she lived until 15 1/2. She only started really getting old about a year before she died, so we had some wonderful times. She loved to be outside on our decks or go for short walks with me. Before I was really sick, she would hike up to a trail behind my house, and I would let her off the leash. She loved to run, and was very strong for her size. She was about 22 pounds, when she was healthy, and had no trouble jumping up on my bed for a belly rub.

That's a hard decision, as I've had many animals over the years; but parrots are special creatures, Shakey, and of course, so are dogs, Bella, as I lost mine back in February. But if you are not able to take care of your animal, being sick, it is probably a wise decision. So sad for you both I was sick when Windy was dying and my husband had to help me with her; but he loved her, too, so it was hard on us both. We still have a cat, and a tank full of fish, but the cat is more my husband's animal; I'm enjoying my fish right now...but even they need attention and care, and Tom helps me with water changes...

Already written in my notebook of various questions and scientific tidbits. Thanks

Yeah, Anna, it was the most bizarre symptom I've ever had...going to the doctor tomorrow, am having an echo and a stress test.

I have asthma, but this is very different than that kind of shortness of breath. I am not wheezing. There is a tightness, that I haven't quite experienced before, which is starting to concern me. I'm on a cardio-selective beta blocker and have been for a while now, so I don't think it's related to that. It could be blood pooling in the lungs, because I've actually coughed up blood before, when I had no upper respiratory infection or even asthma, but that was about 8 and a half years ago, before I was diagnosed, so maybe I'll need a pulmonary function test. When I was tested in my sleep study, my O2 saturation was fine, but that was almost 2 years ago.

Thanks Tachy...very interesting. Maybe that's why I feel horrible after exercising or during, too. I'm finding lately I've had trouble breathing in the warmer weather after singing, too! That exercises the lungs. I'm talking with my doctor about it next Thursday.

Andy....Beta Blockers are tricky to find the right one for you, but like you, I have asthma, so I'm on a cardioselective beta blocker that's relatively new, called Bystolic (nebivolol). There is no generic, as of yet, so it is more expensive, but because of a longer half life, 12 hours, it has worked very well for me. I take half in the morning, 2.5mg, and half at night, 2.5 mg. It is very important to exercise, cardiovascularly, too, to prevent blood pooling in your legs. Physiological Panic Attacks are normal with someone with POTS; tachycardia, and dizziness are very common as well. It does feel like you can't breathe, and it is very real! Bebe gave you the best video on dysautonomia, in my opinion!! Wishing you the best in your journey, and prayers for the right treatment for you.