momofsara

Thanks for all the input, everyone. I will definitely make notes of when her PP is very low, so that I can tell her PCP on her visits to him. I do know the nurses have shown concern when she was in hospital and her PP was low. Sometimes, they would just stay in the room for a bit, talking and take her b/p again. Love to all----Susan

I've been wondering about something that happens to Sara fairly often. When her b/p is taken, the numbers are sometimes very close together (ex. 94/80) I was told once that if the numbers met, (ex.80/80)you will die. I do know that one time when she passed out in JC Penney's and they called the paramedics, her pressure was 85/78 and the medics were very concerned. They worked very rapidly to get her to the ER. Now this was when she lived in San Diego Cal. and I wasnt there, so this info is from my memory, she doesnt remember much about it as her memory has gotten very spotty about some stuff. I do remember her telling me right after it happened that the medics were kind of in urgent mode after taking her b/p several times. After getting her to the Naval hospital, she got fluids and not much else, and was sent home. ( Dont get me started on military doctors and hospitals) !!!! She never had positive treatment at the Naval hospital. Anyway, thats another story...... Sorry this ended up so long, but I was wondering if anyone else here gets the close together b/p readings. Love to all-----Susan

Sara takes Ditropan XL for the spasms of her bladder and tried Elmiron for a while, but the side effects were more than she could tolerate. She tries to avoid triggers, however stress seems to be one of the worst ones, which is unavoidable sometimes. As to the Chiari surgery, we dont know if we would have the surgery again. Its questionable whether or not it helped. We do know that her pain level is MUCH worse and she now has dementia because we found out later that the surgeon went deeper than necessary into the brain area and caused some damage which is irreversible. But at the time, we were told that she would be paralyzed by the time she was 30. So, you just make the best decision you can. I would definitely advise getting a second opinion before having the surgery however. She didnt have the mini seizures before the surgery either. So we are not big fans of the procedure. I'm not saying that no one will benefit, just that her outcome was not what we hoped for. Hope all this rambling helps some.... Best to you Susan

Hi there--I cant offer anything on the biopsy, but I do know that Sara has interstitial cystitis also. This was diagnosed by a very prominent urologist. He did a specific test which only tests for that condition and hers was overwhelmingly positive. He did say it was unusual to find it in someone as young as she( 28 ). However, she was also diagnosed with the same thing at around 10 years old. She has been suffering with bladder problems since she was very small. Good luck with your testing and keep us posted on your progress.... Susan

Sara is allergic to Bactrim, however it has worked wonders for me for UTI's etc.... good luck-----Susan

Hollie, please give your wee one a big hug for me. That comment was so sweet. You know the saying from the Bible," Out of the mouths of babes". Sometimes kids can be the most understanding and compassionate. And the family comments---geesh, do I know about that!!!! Best to you--Susan

As a "Mama" of a daughter with "generalized dysautonomia" I understand the frustration. It took us about 3 years to find out what was wrong with Sara. And it is very upsetting when you are young, and see the world passing you by. We have spent countless hours in doctors offices, having test after test, and many, many trips to the hospital. I said all that to say that we understand and truly do empathize with you. Just dont give up, and keep doing everything you can as you are able. Sara, unfortunately had to drop college after only one year and hasnt driven since she was 20. By no means should you think you will progress to the point some here have, hopefully your dysautonomia will remain in the mild form. You will be able to maintain most normal functions of your life if it does remain mild. In fact a nurse friend of ours has a mild form and she does everything. She is head of the rapid response resusitation team at one of our local hospitals. It is my understanding that only a small percentage develop to the severe stage. I am basing my opinion on what some doctors have told us about Sara. We never give up hope for her to get much better, and meanwhile, we are very grateful for her periods of "remission". I know I've not given lots of helpful information here, just want to give a little moral support and hope to you. Hang in there, John, and dont ever quit trying..... Susan

Hey Maxine, your remember the old saying---If it werent for bad luck, I'd have no luck at all?????? Well that certainly suits you this Christmas---Yuck, man how I hate strep. I've never had it many times, thank goodness, but it is awful. Hope you are feeling much better for New Years anyway. Snuggle up with your poochie and drink lots of liquids, ok? Love ya--Susan

Welcome--I have been dealing with my daughter's dysautonomia since she was about 20 also. We have endured many downs and enjoyed a few ups during this time. As to advice, I'm sorry to say there is not a one-size fits all. Each person is so different, not the same thing works for all. Just takes trial and error and most of all a good doctor. I dont know what area of the world you are in, but is there an autonomic clinic anywhere in your area? I would be trying for that or a teaching hospital with a department dealing with such disorders. You are such a wonderful husband to seek help and be so understanding with her. My daughter has cognitive problems also as well as brain damage from brain surgery for Chiari Malformation. That in itself is a major challange for caregivers. You have my admiration and empathy for what you are dealing with. I'm sending my sincere hopes and best wishes for your wife's improving condition. All of us here on the forum are very supportive of each other and are always willing to listen to your problems, offer advice when we can, and give unconditional support. Take care and please tell your wife I'm sending healing thoughts her way. Susan

I send my sincere wishes for a very happy Christmas to one and all. My prayer is for a safe and hospital-free holiday for each person on this forum. My New Years hope is the same as everyone here-- a cure or at least a better form of treatment for the dysautonomias.... Love and best wishes from Sara and I. Susan

Fishy, Fishy, so glad you are back in your own fishbowl. I was so worried about you and an so very happy to read your post. Hopefully, you will continue to improve and be able to really enjoy the holidays. I certainly hope your wound continues to heal properly. Great big (gentle) hug to you and take very good care------ Susan

OH, my dearest Flop--how glad I am that you are once again home. Do take care of yourself and maybe you will have a very good holiday season. I'm just so very very happy you are home and hopefully you will have no lasting effects from all the junk that went on...... Hugs and best wishes---- Susan

On Tuesday, I took Sara to have her new port flushed for the first time. We were both a bit nervous(as you always are with a new doc). We didnt know if he would be one of the disbelievers or not. He is a hemotologist/oncologist and we were a little afraid there would be lots of questions as to why she had the port, since she doesnt have cancer. However, we were very pleasantly surprised. All the office staff were super nice, and the doctor was a gem. He was very understanding of the dysautonomia and said it was something not much was known about.. Also asked if we were aware of the Dysautonomia Clinic in Birmingham. We told him we were, and her PCP is checking in to see if they might help her and if Medicaid will pay. The new doc wants to have some specific blood work done because hes concerned with all her infection history. Wants to see if there is a defect in her blood chemistry somehow. But we were very pleased overall with the doctor and the staff. The nurse who flushed the port was so sweet. Anyways, since we have all had such a problem with doctors, just thought I'd put in a good word for this great one Sara has now. Best to all and hope everyone here has a very symptom-free holiday and a blessed Christmas.... Susan

Melissa, dysautonomia is how I explain Sara's illness. You are right, it helps people understand a little better. Susan

All this sounds waaaay too familiar. Sara had the same problems growing up. She has been diagnosed with interstitial cystitis also. Just wondering if this is an offshoot of the dys. HMMMMM.... Susan

Hooray!!!!!

Sending positive thoughts for you. Hope they dont have to reschedule, I know thats a real pain. Best of luck to you and keep us posted. Susan

ditto on the liquids, its the most important part. Have you contacted your doctor for advise on what to take for your symptoms??? If you are having fever, try some Tylenol. But most of all LIQUIDS. Take care, and let us know how you are. We care for each other on this forum. By the way---welcome to the forum........Susan

Oh, fishy---so glad to hear from you. Extra glad you have the fever at bay. I hope you do get to go home soon( but not too soon, of course)........Keep us up to date on your progress. Love and prayers-------Susan

The excessive sweating has just started becoming a problem for Sara. Totally wrecks her make up on the rare occasion she feels like putting some on. Susan

Yes, baths and showers are difficult for Sara. It takes her quite a while to recover afterward. We have found that a shower using a shower chair works best for her along with lukewarm water. Also, not staying in for too long. And, yes, it frustrates the heck out of her also...... Susan

Just adding my love, good wishes and prayers to the list. Hang in there, Melissa, we all love you. All good wishes and prayers are being sent for Flop also. The forum needs both of you very badly. ((((((((((((Melissa)))))))))))) ((((((((((((((Flop))))))))))))) Susan

We were able to get a wheelchair for Sara by her PCP writing a prescription for it. Medicaid paid the whole thing. Now, keep in mind this isnt a power chair, its the traditional wheel chair which I push for her. Its been a real help, though, for taking her to doctor appts. and even getting her into a store for a short visit. She wasnt in a store for almost a year, either. She kinda feels like a "bird out of a cage" now that she has her "wheels". I truly hope you can get something to help you be able to get out more. I'll be holding you close in thought and keeping positive vibes coming your way. Susan

Glad to hear that you at least had some compassionate doctors and nurses. Hopefully you will recover quickly. Sending well wishes and positive thoughts your way. Susan

Dearest Flop--so glad to hear that you are on the mend. I'm hoping and praying things will only continue to improve. I'm so very sorry you had to endure all this, but I'm also very glad you kept your sense of humor and your positive attitude. We are all pulling for you and we all need you here...... Keep us posted and we will keep you in our thoughts. Hugs to you (((((((((FLOP)))))))))))) Susan