momofsara

My Mom didnt have any dysautonomia problems, however she did have cardiac problems and high b/p. Her cardiologist didnt want her pulse to go below 40, and told me to get her to the ER if it did go lower. Especially if it stays down a prolonged time. Sorry you got such shabby treatment in your ER. I think we've all been there at some point. Seems like some ER docs just dont "get it".. They are useless unless you have a bone poking out of your leg, or a gunshot wound!!!! Take care of yourself and please call your doctor. Hope you feel much better soon..... Susan

Dearest Melissa--So glad to hear you have the "bugs' on the run. Sorry the wound care is a big owie,,,,,, . I'm sending very positive thoughts and healing prayers your way. I'm confident your procedure on Monday will go smoothly and you will be "paroled" soon. Take good care of yourself. (((((((((((((Melissa))))))))))))) Sara sends her thoughts and prayers for you also. Susan

Sara took Xanax for a very long time and it really helped with her stressful times. She took it mainly on an "as needed" basis. However, due to her pain meds, her Pain Management doc took her off Xanax. She had no withdrawal whatsoever... the only thing was she missed having the relief it offered. Shes now on Tranxene, which does not do as much good, but is better than nothing. With it she needs to take it on a regular basis, as it helps with her mini siezures also. Good luck, and dont let the "horror stories' scare you, not everyone has a bad result (addiction).. Take care and I certainly hope your holidays are better than you expect. Sara has been in that situation before and it was awful. I'll be thinking of you......Susan

My dearest flop-----Hugs, healing thoughts, prayers, and all the good stuff I can send are coming your way right now !!!!!!!!! Hope things go well with getting that hip back in its appropriate position....... Thinking of you and keeping you close in my prayers-------Susan

Melissa--Just adding my prayers and healing thoughts to the ones already posted. Hopefully you will have a brief stay at the hospital and they will conquer those nasty bugs ....... The very best to you and hope to see you here again very soon .... Hugs to you ((((((((((Melissa)))))))))))) Susan

Best wishes Ernie, I'll be thinking about you and praying for you. Susan

Well, so far, so good. Sara is feeling somewhat better after the implantation of her port. Getting all the infection out of her body has been a big boost. She has been able to be up more and was able to attend our Thanksgiving Day gathering. She was up for quite a while, but did have to lie down for a rest. She has had a few episodes with her b/p dropping and feeling very dizzy, lightheaded, and having those pre syncope feelings. Yesterday her b/p dropped to 83/53. She was feeling very bad about then. However, she did recover and felt better today. We go on Friday to get the stitches out of her incisions. Now we have to find out about the monthly flushing, whether we will have to go in to a doctors office, or whether I can be trained to do it at home. Her PCP is going to check into the Autonomic Disorders-Mitral Valve Prolapse Center in Birmingham. Just wondering if they have anything more to offer than has been done so far. We'll see. Gentle hugs to all------Susan

I completely agree with firewatcher, keep ALL copies of your tests, etc. If they are not offered to you, ask for them. I cant tell you how many times they have been very helpful in Sara's care. Many times, doctors just simply are doubtful if you only TELL them your results, they are more receptive if its on paper. Also sometimes there is a time lag or even difficulty in getting reports sent from one place to another ( labs to doctor, one doctor to another, etc ) Anyways, best of luck to you and take care.... Susan

Sara has a TENS unit. It was prescribed for her by her pain management doctor. Her insurance at the time paid for it in full. It does help with the pain, however, where she has much of her pain is in the occipital region, so its not a good idea to put the pads in her hair. But it does help for pain in other areas. Good luck, Ernie, hope you find some relief with the TENS.. Susan

Hi Seth, welcome to the forum. I'm so sorry you are having these problems and I do know it is depressing. And you are allowed the occasionaly pity party, as long as it doesnt become permanent. The up side is that the POTS usually gets better for folks as young as you. Have you seen a neurosurgeon? Sara's Chiari Malformation was diagnosed with something they called a small slice MRI. According to the teaching hospital we took her to, not every hospital has the capability of doing one of those. I am hoping the best for you, and hoping you get a really caring and competent doctor. Keep us posted, we care about each other on this forum. Try to keep your spirits up and come here often for some good wishes..... Best to you........ Susan

Sara has been put on Florinef more than once. However the side effects are intolerable for her. The mididrine has bad side effects for her also. Hope you find something that works for you.... Best to you....... Susan

Sara hasnt driven since she was 21. She had a similar experience as yours, except she rammed a handicapped sign at the Mall. Luckily she wasnt driving fast either. After that she continued to drive for a while. Then she drive herself to the doctor one day, and her b/p was so low, the doctor said she was NOT going to drive herself home. ( He had been her doctor for a long time and treated her like family ) He made her call me to come get her. He took her driving privileges away after that. Good thing he did, actually, because we found out after all that, she had been passing out all along while she was driving back and forth to college. Just get the "feeling" and pull off the side of the interstate, pass out, come to, and go on her merry way!!!! Needless to say, I was not a happy camper....... Anyway. I know you are disturbed to lose your driving privileges, but try to adjust the best you can, I'm so glad you weren't hurt, and very, very, glad you had a guardian angel to stop to help you. Susan

Sara also has severe nerve damage. I am not sure where hers came from, when she had the test, the doctor said that it could be from either the dysautonomia or possibily a result of the surgery she had for the Chiari Malformation. Personally, I think its from the dysautonomia. Like you she has lots of pain, but also doesnt have much feeling from outside stimuli (as hot water, needle sticks, etc.) seems weird, but thats how it is. Take care---Susan

Chrissy, do you mind if I ask how much it cost? I would love to get one for Sara--thanks, Susan

Amen to that !!!!!

Sara has had similar doctor encounters. After her surgery for the Chiari Malformation, she continued to have problems for which we returned to the neurosurgeon who did her surgery. Well, since he had already "done his thing" there was obviously nothing else wrong with her, so she just needed to get lots of exercise!!!! The feeling he gave us was " I am perfect, so it must be your fault if you are still having problems, now go away and leave me alone". Another doctor saw her one time and sent her a letter saying he would not see her any more so to find a new doctor. After much insistance, I got the office manager to pull Sara's chart to see what his comments were after her first visit, he put in her chart that " I have nothing to offer her". Evidently, her case was too complicated for him. So, there are lots of JERK doctors out there. Hope you find one with more understanding.. Best of luck to you... Susan

Hooray, Ernie, hope it works out well for you. Best always----- Susan

Alicia, my Mom used one in rehab after her cardiac surgery. She mostly used it on a table top for upper body exercise, but some on the floor for legs. It seemed to work very well. I have bought Sara one to use, but she hasnt started on it yet. Her doctor suggested we get it for her. Susan

Chrissy, I'm so sorry you are feeling the impact of your Dad's depression. You know, however, we are all here for you and are perfectly willing to let you vent all you want to. Sara has seen a psychologist and some doctors in the past who also think her main problem is being immature and wanting attention. I have always wondered, how you can make your blood pressure drop to 80/40 and pass out completely just because you want to???? Speaking from a parents viewpoint, however, it is very disturbing , depressing and stressful to have a child, no matter their age, with a very life altering condition. It can be very hard to prevent your child from feeling the resulting anger. I cant say whats going on with your Dad, maybe something else in addition to your condition is bothering him. I truly hope things will improve for you soon, and feel free to come here for understanding and compassion any time. I will keep you in my prayers and my thoughts. Gentle hugs (((((((((Chrissy))))))))) Susan

So sorry to hear about you having such a bad time lately. Hope you feel better soon.. Susan

Sara's tests were given by 2 different psychologists. Both were for her disability exam. The first one returned results of "dementia" When the disability doctor got this report he had another test done with the same results. Guess the disability people were surprised by this diagnosis in someone her age. She was 24 when the test was done. I dont know much about what was involved, as she was alone with the psychologist doing the test. I do know that in the preliminary test done by the disability doctor, he gave her a list of items to remember, waited about 1 minute and asked her to recall them. As well as several other similar tests and he asked her lots of questions. She did miserably on the memory stuff. She definitely has a real problem with short term memory. She remembers things from her childhood, but not what she had for lunch fifteen minutes after she eats. Gentle hugs--- Susan

From a personal standpoint, Sara has been told her dysautonomia is progressive. She has several aspects of dysautonomia, including pots. So, I dont know if it makes a difference if you have more than one of the conditions under the heading of dysautonomia--- Sometimes, I think the more I know about this thing, the more confused I get Anyway, thats what we've been told..for what its worth. Susan

Prayer, first and foremost. my favorite verse--"I can do all things through Christ who strengthens me." Phil. 4:13 Gentle hugs to you -- Susan

You can most definitely pass out driving. Sara did and luckily all she hit was sign post, and was not injured. The last time she was under the wheel of a car, she drove herself to the doctor's office and her b/p was so low, he wouldn't let her leave. Made her call for someone to come get her and when he found out about the accident she had, that was the end of her driving days. So please be very careful if you are still driving. She hates being dependent on someone to take her everywhere, but its better than maybe hurting herself or someone else. Take care and I truly hope you can find another compassionate and understanding as well as knowledgeable doctor. Take care, and gentle hugs--Susan

I cant improve on what has already been posted, just offer my understanding, compassion, and love. Sending you hugs and best wishes along with prayers for your well being. Susan