Different Symptoms

[sky]

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?

[Dizzy Dame]

Sky, I don't have PAF, but I was wondering if you have a wheelchair yet? I can't stand for more than about 15 minutes on a good day (0-3 on a bad day), so I need a chair when I go out. It's really improved my quality of life.

[sky]

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.

[nadine]

Sky-

I think you do have more in common than you think, everyone is different here. I also have cold extemeties, yet can't tolerate the heat as it causes me to feel verrrrrrry lightheaded and presyncope kicks in. I am not able to go much of anywhere- usually doctors apts. I left my house for the first time in 3 weeks last night. I managed a ride to the beach and dinner with my husband---------major accomplishment,despite constant balance problems and many other symptoms. I really didn't think I would make it, but so happy I did. He is on vacation and we haven't been able to go anywhere or do anything social for this past year. I think I have been it out to eat for a total of 3-4 times. Mostly on return from out of state doctor visits.

My life had been upside down for sure not working, driving and very dependent on others for everything. I use a cane and am also trying to find something compact for chair/cane that will hold a person, without collapsing. I hate using a wheelchair, but can only walk a few feet at a time. One long corridor will do it for me. Depending on the day, I can stand anywhere from 5-15 mins. maybe. Somedays, can't get up at all.

Things can vary for me from minute to minute, not necess. good/bad days ,but good/bad minutes.

I think you should post what has helped you

[Jacquie802]

Hi,

I'm glad you decided to post. I am sure there are ppl here who could offer you some advice, and I'm sure we could use some of your helpful suggestions...so post them!

As for the fold up chair, I know a while back I saw a post about them. I forget who it was that posted it though...

Anyhow, welcome to the forum!

Jacquie

[AJVDK]

Hello, I wanted to say hello, abd say I have Ice cold hands and feet all the time. In fact I take warm bath 3-4 times a day to warm up, I wish I could take hot baths but I get dizzy if I get to hot. I use a wheel chair when I go out as I get to tired, shortness of breath, and dizzy if up to long. I agree a wheel chair does improve my quailtiy of life, but I still want to do everything myself, I don't life help, as I guess I like to be in control all the time, It one of the things I am working on right now. I also have a powerwheel chair that I use when camping, or when we are going out for long time, (this doesn't happen much anymore as my health has gone done hill).

They one thing is I think everyone here know's what it is like to have a form of Dysutonomia, where it me POTS, NSC, NMS, PAF, and others ( sorry can't think today) I know we are all at differnt levels, but at some level we all know what it is like. Thats why this web site means so much to me it the one place I can go and everyone understands.

I wish you the best, and hope we here more from you! I know I get alot out of veryones posts!

[sky]

Hello, I wanted to say hello, abd say I have Ice cold hands and feet all the time. In fact I take warm bath 3-4 times a day to warm up, I wish I could take hot baths but I get dizzy if I get to hot. I use a wheel chair when I go out as I get to tired, shortness of breath, and dizzy if up to long. I agree a wheel chair does improve my quailtiy of life, but I still want to do everything myself, I don't life help, as I guess I like to be in control all the time, It one of the things I am working on right now. I also have a powerwheel chair that I use when camping, or when we are going out for long time, (this doesn't happen much anymore as my health has gone done hill).

They one thing is I think everyone here know's what it is like to have a form of Dysutonomia, where it me POTS, NSC, NMS, PAF, and others ( sorry can't think today) I know we are all at differnt levels, but at some level we all know what it is like. Thats why this web site means so much to me it the one place I can go and everyone understands.

I wish you the best, and hope we here more from you! I know I get alot out of veryones posts!

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?

[Guest dionna]

i agree with the wheel chair as advice. anytime i go out in public i use mine. i would rather have everyone look at me funny just for a few seconds rather than be looked at by everyone for an extended period of time and 911 called everytime i leave the house because of passing out. what does PAF stand for? i just like researching things to broaden my knowledge. not that i usually can recall anything but... it also just gives me something to do.

dionna

oh yeah i have the cold hands and feet too but i think its just because of poor circulation. my feet are purple a lot. so i understand you on that one.

[sky]

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?

[Dizzy Dame]

Hi Sky

I use the term "dizzy" to mean light-headed. I know alot of people here on the forum interchange the words "lightheaded" and "dizzy", although some people here do get vertigo (which I consier to be true dizziness).

I'm glad you feel like you have more in common than you initially thought. I know there are people on this forum who have PAF, so you should find others who can help you understand and come to terms with your specific diagnosis.

Also, you are right about PAF being worse than POTS (usually), although POTS can be incredibly disabling depending on severity of symptoms, or it can be only a minor annoyance (in very mild cases).