momofsara

I havent been to the forum in about 3 weeks because Sara has been in the hospital since March 23. She was admitted for vomiting and diarrhea which were very very bad. All this continued with the doctors throwing everything they could at her to stop it. She didnt swallow a bite of anything for 12 days. Even ice chips came back on her. Any way, long story short, they found out her gall bladder was bad and removed it yesterday. She has had such a rough go of it and is now vomiting again. I hope its only a side effect from surgery, but let me say that this has been a very trying ordeal. She has been and continues to be a very sick girl. At least one good thing has come from it, she now has a good endo. He actually researched dysautonomia to help him treat her( how bout that??) He has a partner who is very educated in the dysautonomia stuff and Sara's endo consulted with his partner for information also. I'm home now for the first time in over 2 weeks, so I'll make this short and will bring you all up to date ASAP. I must say that this time around, I've been more worried than usual because of how severe her problems were and I just didnt know how much more her body could take. She has been very down also and I'm hoping she wont stop fighting. Please keep Sara and our whole family in your prayers. I have missed you all so much and look forward to the time when I can be here more. Love to all Susan

Dearest Suzy-- HAPPY, HAPPY,JOY, JOY--- This is me doing my happy dance for you !!!!!!!!!

Congratulations on being accepted at Vandy. I hope you will get lots of information and help. Hang in there until time to go and keep us updated. Best always------

I know how hard it can be to deal with unfeeling people. Its hard for them to know what you deal with on a daily basis when they are going about living their lives in a "normal" way. If they would only think about how they feel when they are sick with the flu or something, then think about feeling that way all the time maybe they would have an inkling of what its like. I dont think there will ever be a time when people with a chronic illness are truly validated. The general population just doesnt take time or interest in anything that doesnt directly affect them. OK, I'm off my soapbox now..... Take care everyone, and above all hang in there Susan

(((((((HUGS))))))) to Rene--Hope you find a caring, knowledgable doctor and very, very soon. Take care, and remember we are all here for you and best of all---WE CARE about you. Keep us posted Susan

We got a book from the NDRF called the NDRF Patient Handbook. It has some useful information, however there are several other publications mentioned on their website--www.ndrf.org Susan

it seems that Sara gets more relief from the nausea with phenergan than with zofran, cant say why, but it works better for her. Also the suppositories sound like a good choice if you can use them. hope you find something that will give you more longlasting relief. Susan

Dani--Just chiming in with my heartfelt compassion for what you are going through. Although I dont have the condition, I'm here because of my daughter. She was diagnosed at 19 and is now 29. So we have pretty much run the gamut of ups and downs and everything in between. I know from what she tells me that the support of loving family, friends is all important. She has lost all her friends except one kind of part time friend.And since we have a very small family, its pretty much up to me for the support, but I'm available 24-7 for her. Just know that you are among loving, understanding friends here and will always get some long distance hugs(sometimes lots of them). Hoping you feel much better soon. (((((((((hugs))))))))) Susan

Sara has the sleeping problems also. Especially if she has a doctor appt, or some other activity. Soon as she gets home she crashes and usually sleeps for 18-24 hours almost nonstop. We dont have much experience with the other things you mentioned, but it does sound like it could be allergy related. My son has allergies and if he eats pecans, or bananas his mouth will itch. He takes allergy shots for the other allergies( air-borne----- pollen, dust, mold, etc, etc......) Best of luck to you Susan

Ditto to these for Sara's diagnosis

Hooray.. Glad you have a doctor who will work with your wife to find a treatment to make her feel better, also willing to work with you on not having a long drive so often. It can be a real challange to find a good doctor. I'm sure you have read enough on here to find that out. Anyway, best to your wife and to you. Keep us posted Susan

Michele--I didnt see this mentioned, but wonder if its related to the symptoms you mentioned. When Sara turns her head too far to the left or right, she goes blind(i.e. as a bat) . No doctor we have mentioned it too has an explanation. We just chalk it up to another dysautonomia thing or else related to the surgery she had for Chiari malformation. This is one more of the reasons she is prohibited from driving(as well as passing out, getting confused(lost) etc) AHHH the wonderful world of the never ending symptoms, huh??

Susan

HMMMMM very interesting. Sara has been considering using an at home hair color, and now this makes me rethink the whole thing. Susan

I agree with Ernie on the TTT for a diagnosis. They can tell a lot from the results of it. Talk to your doctor about your concerns and possible testing for you. Hoping for the best for you and many good wishes for your Mom. Hang in there, we are always here to help and give you support Susan

Throw Sara in that big ol pot also. She has the same problems with crowds, stores, anywhere that will get her overstimulated..... And needless to say she goes to very few outings besides doc appts. Love to all Susan

Ditto to firewatchers post !!!! Love Susan

Welcome to our house!!!!!!! I am the Mother of a daughter with severe dysautonomia. She was diagnosed at age 19 and has had problems with the "brain fog" for many years. And yes, she feels out of it, and totally spacey. I know this doesnt help you much, but at least you know you are not in that boat all alone. You have lots of company here. The best thing about this website, is the understanding and information. You will also find much compassion. I hope you are able to continue with your education, unfortunately, Sara had to drop college after only one year and has not been able to go back. But that doesnt mean its out for you, hopefully you will improve enough to finish. And the online thing sounds good too, you could have the ability to rest when you need to. Warm, healing hugs to you Susan

You and your precious daughter are in my thoughts and prayers. I completely understand the desperation felt by a loving Mom. And I totally agree with what thankful said about the loved ones hurting as bad as the one with the illness. But just know that you have our support anytime.... Hoping for some beneficial treatment for your loved one. Hang in there yourself and come here often for support. Keep us updated, we care...... Susan

Ernie, all I know about this type of thing is about Sara's experience. When she was being evaluated for SSI, she was sent to one of "their" doctors. He asked her lots of questions, reviewed her medical file, etc. He also did cognition testing. He would say a list of items, talk a little more, then ask her to repeat the list for him. Her particular review wasnt too bad, didnt last a long time and proved to the SSI doctor that she was indeed disabled, both physically and mentally. Good luck with your appt. Keep us updated. Susan

Welcome, Cordelia, you have found a home ..... This is the most wonderful place for information, communication, and compassion. Again, WELCOME Best to you always, Susan

(((((((((((gentle, healing hugs))))))))) to you from me. Dont beat yourself up for venting, the dysautonomia will handle the beating up!!!!! I'm so sorry you are going through all this, I understand its so frustrating and depressing, but just know that we are all here for you anytime. And please dont stop communicating, dont hold it in, just vent away... OK???? Just come here and vent, whine, cry, scream, etc all you want too and you will be understood and cared for like nowhere else. Much love and concern, Susan

Angela, Im so sorry to hear that you are having such a hard time with "bugs" It seems that when the autonomic system is impaired, it causes your immune system to not work as well. Sara has to be very careful of being around anyone who is sick. She will also catch anything that comes along. The masks are a good idea, in fact I bought her some to wear at the doctors office( a real bad place to be , all those sickies ) and his nurse said it was an excellent idea for Sara to wear those. She hates it because it draws attention to her, which she despises. Do you have a desk job where you could have one of those small air purifiers next to you? Maybe that would help some. Hope you are feeling better Susan

Candace, Sara had a sleep study also. Hers showed narcolepsy, and she was put on Provigil. It will raise b/p somewhat and also cause rapid heartbeat. With her, the raise in b/p is a good thing, however the rapid heartrate is troublesome. It does help her stay awake and that is very helpful for doctor visits, etc. She still has a problem sometimes with staying awake while eating, watching TV, and even having a conversation. If you are given the Provigil, I hope your insurance will pay, because it is very expensive. Medicaid will pay for part of it with a physician authorization. Hope this helps a little Susan

Suzy, Sara just got a wheelchair about 6 months ago. She, too, didnt want to use one. At 29, and living in her home town where she would see many people she knows, went to school with, etc she didnt want to draw attention to herself. And she also "looks good" One of her doctors referred to dysautonomia as a "pretty disease". Sara has come to accept her condition over the years, but still was not happy about the wheelchair. She is gradually becoming accustomed to using it. Its not a power chair, so I must push her as her arms are too weak. We mainly use it for doctors trips, and on the rare occasion she can go to a store with me. I hope you will be more mobile and able to participate in family outings. Keep your spirits up and hang in there We are all in this together. Hugs and best wishes Susan