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Ellen: What are the long terms effects of Flornief that cause you concern?

When I was at Vanderbilt, I was told to have wine only at home. I did restrict any alcohol to when I was home until I realized that I could handle one or two glasses of wine when we went out to dinner. Last Sunday having lunch with friends, I had a margeritta with no ill effects. I refused the second one. I believe that aside from the effect that alcohol has with dysautonomia some of the problem has to do with the blood going to the stomach to digest food after eating. I think with me that it takes less blood to digest alcohol than it does food. Therefore, when I go out to dinner, I watch the amount of food I eat and I can then handle some wine. I do enjoy it once in a while. My advice is to try it at home where you are safe before trying it anywhere else. For what it is worth, I have PAF rather than POTS.

I was diagnosed with PAF at Vanderbilt in Jan. of this year. Before going there, My cardiologst dx me with POTS He was also concerned that I might have MSA, although he never said that specifically but hinted at that as a possible dx. I was worried about that and therefore was relieved when Vanderbilt told me that I did not have MSA or POTS but PAF which resulted in profound hypotension. That is my only major symptom and I believe that I am doing better than those who have POTS becaue it seems that POTS causes multiple symptoms. Consquently, a diagnosis of PAF is not the worse possible dx. There is a man who posts under the name of Bill who was dx 20 or longer years ago with PAF and is now 66 years old and is doing well without medication. That proves that PAF does not necessarily shorten life expecentacy. I think all of us when first knowing that we have some automonic dysfunction researches it on the internet and runs across MSA. One week-end last November I was convinced that I had MSA with only a year or two to live. I know now that is not the case. It may be that MSA is rare and it is more likely than not that you do not have it. Try to get into some place like Vanderbilt where you can get a definitive dx. I also had a urine test that involved the problems that you described, the feeling of a full bladder and unable to void. I am ok in that regard but if I had not been, I think Vanderbilt would have had a treatment for that dysfunction. Good Luck.

I could not take a shower without the bath chair I would be afraid that I would faint and really injure myself. I have a walker with a seat and a wheel chair I do not use them often but instead take a folding seat that I carry in a tote bag. I am looking for a better folding seat as the ones I have used are very lightweigt, which is good, but not stable. I would rather have a heavier one that is stable and therefore easier to use. Anyone know of a good one?

I do not have POTs but PAF No doctor ever implied that it was anything other than a serious physical problem but for over twenty years, I took a beta blocker, Inderal, for a genetic tremor. Because, it lowers the bp, I think that it might have caused the PAF Every doctor that I have suggested this says that could not be. The interesting thing is that I stopped taking the Inderal two years ago and the tremor has stopped The neuro at Vanderbilt said that was most unusual as that type of tremor gets worse with age and never goes away. Why do you think that prescri[tion drugs may have caused POTS or ANS?

I was prescribed Precose at Vanderbilt to relieve post prandial hypotension. Also I was told to eat frequent small meals. I only take the Precose when I expect to eat more than usual. I notice a major relationship between eating, especially carbohydrates, and hypotension. The relationshop is so strong that when I have to go somewhere, I will go without eating for hours in order to function. Strangely enough, I can have a glass or two of wine without the bad effect that I get from food. Dr. B at Vanderbilt tolld me that blood goes from the head to the stomach to digest the food. I guess wine is easier to digest. Has anyone else noticed that wine is easier than food? Do not misunderstand, I do not drink wine before going anywhere but I can have a glass or two when eating out without ill effect. Whereeas if I ate mashed potatoes, I might not be able to walk out of the restaurant. All this sounds logical except when I first get u p in the morning, many hours without food, I have major hypotension beofre I get the first morning coffee

My cardio is the doctor who has helped me the most He is not an expert in auto disorders but he knows what he does not know he ordered the TTT for me and referred me to Vanderbilt I do not have POTS but PAF so no heart problem I see him every 2-3 months At vanderbilt I was told that cardiologists are frequetly the doctor who treat auto patients because they understand blood pressure perhaps better than other doctors. He also is the one who manages my care with other doctors ike the hemologists, and the pcp. Hope you find a good one.

AJVDK: I identify with your need to be in control. I also feel that way. I have no advice on the big issues you are facing but I have found it helpful to find a way to manage some of the smaller challenges we face each day. For example, try to find ways that help to manage your symptoms. These ways vary from person to person but all of us can focus on what we are feeling and look for ways to manage these feelings better. It has taken me a while to learn how to do this. I now can control some things better and some of my need to control are satisified. I am talking about small things like the relationship with food and symptoms. I now know to take my evening shower before I eat dinner because my symptoms are worse after. I have also learned to use caffine to raise my bp for short periods of time and use when I need to be alert. I think we all have things that we can do to help in a small way and that helps us to feel more in control of our lives. Good luck

PAF is pure autonomic failure. That sounds worse than POTS but I have only one serious symptom and that is extreme lightheadeness upon standing upright for a few minutes. The cold hands, feet and legs I can easily tolerate. I do use the wheel chair when going someplace where I will be for a long time, the mall, the airport and museumes. I use something less when going for a short time like dinner, doctor's office and the like. I do not go out alone. I want to get something easily portable like a reliable folding seat that I can carry in a taxi so that I can go places alone. We all want freedom, don't we?

It does now look like I have more in common than I thought at first. Do any of you make a distinction between being dizzy and lightheaded. I feel light headed but not dizzy. Feeling light headed is the same to me as what has been described as presyncope. It seems important to me that I understand the terminology that is being used. My brainfog is a result of the low bp as not enough blood is getting to the brain. It stops as soon as I sit down or shortly therafter. Is it the same brainfog that you feel? Hot showers are not good for me either. I think it is the hot water and steam that causes shortness of breath. I always use a shower chair at home. I can not think of taking a shower anymore without one. When away from home and a shower chair, I take baths but those are more difficult for me. I suspose there is no one on this forum that has identical symptoms but enough similarity that someone can identify with some of the experiences. I know that people understand why it is important to me to find the understanding that can only exist from one who has had like experiences to some of mine. That is the greatest value of this forum. Agree?

ernie and mighty mouse thanks for your replies but could you be more specific. If you already had the dx and the meds how were you helped by Dr. Grubb. I am fortunate in that I have a cardio who moniters me but has never had a dysautonomia patient before. So he is caring and open minded but not really an expert. I am more than willing to go to Dr. Grubb if I thought it would help in any way. Of course, I certainly know no miracles exist. I am grateful to Vanderbilt as if I had not gone there, I would have wondered about my dx and if anymore could have been done but I did not get a magic pill.

I do have a wheel chair and a walker with a seat and have tried two different portable seats. The portable seats are not stable enough to be of help. I desperately want to be able to go out alone. I live in a high rise that does not have an entrance which can be used with an electric chair. This should perhaps be a seperate topic but I will post a question asking if anyone knows of a seat which is stable and easily portable, lightweight and can be carried. That would give me so much freedom. I would need it when I get the symptom which includes brain fog so setting up the seat must be easy.

I have monitored the forum for some time but only posted for the first time last week. After posting and wanting to post replies I realized that my symptoms were different from most of you who post. Ihave PAF rather than POTS. I noticed that many of you suffer from the heat. In contrast, I like the heat as it is the only time that my hands and feet are not freezing. It is in the low 70s now where I am and my hands and feet are ice cold. Also, I note that many of you have multiple symptoms but are able to go places, shopping, driving, library and the like. I can not go out alone due to the inability to stand upright for more than a few minutes. In addition, I am lucky in that the lightheadeness that I get, my worst symptom, goes away when I sit. I do not have good and bad days like most of you but good and bad times within the day. I have learned some things to do which helps me to cope but do not know whether these things would be helpful so should be posted or whether because my symptoms are so different that these strategeries would not work for others. I would like to know if there are others out there who have symptoms like mine. Also, so many of you have the best time of the day at night. Mine is in the morning. Although I have only one major symptom, the extreme lightheadeness, it is disabling. No meds helped that I could tolerate. The midorine and stratera which raised bp and helped resulted in major headaches and so were discontinued. I take only flournef . Anybody out there like me?

I understand the answers to Friday's question for people who have not been dx. It must be a joy to first see a doctor who understand the disorder. But what about those of us who have been dx. I was dx at Vanderbilt and only given certain coping strategies but no meds that helped. I was already on Flournef. So the question is would it still be a good idea to see Dr. Grubb in the hope that he could come up with a med that would help that Vanderbilt did not. I was at Vanderbilt in Jan. of this year. Aside from meds is there any other way that Dr. Grubb could help for people who hae been dx and have been to Vanderbilt. I am willing to take any measure that might help but do not want to spend time and money just to see another doctor. Thanks in advance for your replies.

Midodrine gave me two great weeks when I first took it. After that time the horrible headaches started. Advil or anything else did not touch it. I had to stop. The same thing happened with Straterra. I do take Flournef without any side effects. I concluded that anything that raised by bp would cause the headaches. Even if I was willing to endure the pain, my drs. here and at Vanderbilt did not want me to continue those meds.

I, also am an attorney and got a placard over a year ago. The form was on line and my cardo filled it out. The form requires a box to be checked which indicates whether the disability is temp or permanent. He was apologetic about checking the form for permanent. He said that he checked that box as it was more efficent for me to use. I think that he was being senstive to my feelings then as I wanted to think that my affliction was something that would pass. Now I know it is with me always. The placard is good until 2010. I did not drive to work, however. I had a driver who had a taxi and whom I paid monthly. I could not have practiced as long as I did without that help. I quit practicing at the end of last year as I was concerned about activities outside the office. I stopped going to court in Nov. of last year and stopped attending meetings at other firms. This was no way to practice law. Better luck to you. I think that the more you reserve your energy, the longer you can continue. I miss it terribly but I had a long career and it was time to let it go. That is not , necessarily true for you. Everything I did with the placard was either on line or through the mail I did not have to go to the DMV

Nadine: I do not know if I would have figured out the relationship with food if it had not been for my Vanderbilt experience. I learned that carbohydrates were particulary problemetic. Blood pools in the stomach to help with digestion, thus leaving the head and causing symptoms. I also learned that cafeine helped in this regard. Although, Vanderbilt did not give the magic pill that I had hoped would materialze, it did help in numerous ways. Sorry you had such a negative airplane experience. Otherwise, going to Vanderbilt, even if no magic pill, is helpfull If it can not give a definitive dx, no place can

I am overwhelmed with the welcome I have received. Thank you all. I do not know why I have waited so long to post. I should have known from reviewing this forum that I would be welcomed warmly as others have been. Lauren, I was at Vanderbilt for about 10 days leaving around Jan. 21. I was told by Dr. B. at that time that PAF was not a common dx but there was no indication that my condition was progessive. I think that the fear of anyone with that dx is that it will progess to a Shy Dragger condition. I think that I am stable and unlike so many of you I am consistent. I do not have good days or bad but good and bad parts of days. I can associate these changes during the day with food. The less I eat, the better I can manage the symptoms. On days that I need to go out, I just do not eat for hours. Do any of you manage your symptoms this way? Sandra

I did all of those things before I had any dysautonomia symptoms. I first had symptoms two years ago but did not get diagnosed until a year later and them not a full dx until last Jan. I continued to travel and work until Jan of this year. I led a risky lifestyle insofar as I could have fainted and seriously injured myself. I am now afraid of doing much of anything. It surprises me that many of you are able to do things that I can not but I have fewer symptoms than most of you that are more active. Perhaps age had something to do with it.

Thanks for the welcome I did not know that PAF was just a dx for older people. Is it? I did know that I was too old for POTS. I have fewer symtoms that most who post. But my major symptom is extreme lightheadness upon standing. I can only stay upright for 3 to 4 minutes. However, I recover upon sitting. Is that your experience with PAF? Sandra

I have been a lurker on this forum for months but have not posted until now. I was dx with pure autonomic failure at Vanderbilt last Jan. I have noticed that so many of you are young women who desperately want to finish your school, have careers and children I have done that. I had a career practicing law for almost 30 years. I have been blessed with four children, all adults now and very supportive. I. therefore, do not feel that I have the right to complain. I was also a big international traveler.. This great life came to an end in December 2005 when I had to gve up my practice. I hoped, although I knew better, that Vanderbilt could do something to improve my abiility to function. Vanderbilt did help by giving me a dx and various coping mechanisms. I am having a difficult time adjusting to this inactive life. I would like to post to share and also to aks questions. All of you seem so much more knowedgeable than I am about this strange disorder. I will stop now and just let this be my introduction.