wibbleway

Thank you both. I too am a preacher's wife and use an electric wheelchair at church. When I teach a small Sunday School I always break out. They are use to it and know when I need to lie back and put my feet up. So dignifying. So many ladies say, "Well I have hot flashes." That doesn't even come close to these. It is so hard to explain. Again thank you. Cathy

This disease is so frustrating. I need to know if anyone else has tremedous sweats accompanied by body heat that radiates. When my sympathetic nervous system is stimulated or when I've stood too long (6 min) my heart goes into tachy and then come the sweats and heat. My husband says he can feel the heat several inches away. What in the world causes this? It is all over and so embarrasing. Let me know about your trials with this situation. Thank you. Cathy

I love your hair! I'm gonna give it a try!

Those are all some great ideas! Thanks! I will definetly look into the hair dryers that are quiet and the hair drying stand. I had breast cancer 3 years ago and lost all my hair due to chemo. Maybe it is time to bring out the hats again! I was so glad to get my hair back and now I can't fix it! I will look into a perm also. Anything to help. I have tried to cool down in between but once the stimuli is there, it doesn't seem to help. Since the heat of the blow dryer and curling iron seems to also increase everything, I'll try the lower setting and maybe a curling heated brush. Those aren't as hot! Again thank you for the encouragement. Cathy

Thanks for your encouragement. I always sit, but it seems that putting my arms up to curl the top pushes me over the edge. I am 50 so my hair is shorter. It is just so hard. My heart rate goes through the roof. My disease is different in that the blood pressure (both numbers) also raise up real high and then after about 10 minutes the whole thing (blood pressure and heart rate) bottom out and so do I. Any help or advice would be greatly appreciated. I have to take a bath again or change clothes after doing hair. What a mess!

I am so frustrated. I have been battling this disease for 3 years and it is getting worse. I have tachycardia spells and sweats just blow drying my hair. I sit on a stool, lie down, get up, and try again. I am completely worn out by the time I'm dressed. Dizzy, sweating, nauseated, spots before my eyes, pale and clammy. What a way to live! Do others have this same problem and what do you do? This is the pitts. Cathy

We just booked our cruise for this summer. Flying is out for me so this sounds like it will be great. Hope you have a wonderful time if you go. I was assured that a wheelchair would be provided for me because of walking (can't go more than 10 minutes without severe symptoms). Their handicap service is supposedly wonderful. My husband and I are looking forward to relaxing, sleeping, and eating. We probably won't go off ship unless I can ride. Let me know what you decide. Cathy

Hi! I flew last year and it was not a good experience. The altitude really made me feel bad. I have very low blood volume and was on one of the smaller jets. I got tachy and sick but there was no where to go. Don't know how it would be on a larger jet but I will not fly again unless I have too. Hope your experience is better than mine. Each of us are so different! Cathy

Hang in there! You are an inspiration to us. I know how those sides can hurt. Can't believe you do as much as you do. Know we are thinking and praying for you. Keep us informed. Cathy

Thank you for your information. This is my first full day and I'm having some problems. Headache and my chest feels like it needs to pump hard but can't. I do feel antzy and irritable. It seems to help my tachycardia but not helping me feel better. I'll try a couple of more days. Let me know if you hear anything else about this medicine. Thanks! Cathy

Dr. Robertson said they were having some wonderful results from Mestinon. I believe it can help with the blood pressure and heart tachycardia when standing. He said they have seen it give some relief from those symtoms. I seem to also have Sjogren's so the Mestinon can help with more tears and saliva also. I just started the medicine yesterday so I'll let you know how things go. Thanks for your interest and help. I will be checking my heartrate and blood pressure lying and standing today to see if there is any change. I'll keep in touch. Cathy

I just got back from seeing Dr. Robertson in Nashville. He is trying me on a medication for people with Myastenia Gravis. I believe the name is Mestinon. Has anyone else tried this medication? Will let you all know how I do on it. Cathy

Thank you so much for expressing what so many of us feel. I finally got a electric wheelchair but even that doesn't help on bad days. I too have tried to run into the store for a moment and found myself in the check out line with horrible sweats, dizziness, chest pain, and had to run. It is embarrasing and maddening to say the least. This also has been a bad week for me. Hope you are doing better! It sure helps to know we are not alone. Thank you again for sharing! Cathy

I have been wondering if my gall bladder was messed up. The doctors don't seem to think so but my right side above my waist feels like it is kinked up inside. Guess that is all part of the digestive problems. I will talk to Dr. Robertson about it. Thanks for your encourage and help. Cathy

Sounds like a lot of us have digestive problems. I am going to ask Dr. Robertson in a couple of weeks to give me something to slow down my autonomic response. My swallowing problem is worse when my system is so sensitive to stimuli. Let me know how you are all doing and thanks for all the great info. Cathy

I second what everyone else has said. I too have had extreme heart palps lately especially when I lay down. The doctor said it was from the change in position. I did go and have my heart checked out to make sure. Always better to be safe. Cathy

Thank you Dan. What a relief to know someone else struggles with this. I go back to see Dr. Robertson at Vanderbilt in two weeks and will let him check me out. I too have been to the GI doctor and tried to swallow pills while sipping coffee. Of course the pill lodged and took forever to go down. I'm not losing weight even though my whole gastro track is messed up. I appreciate you sharing your story with me. I hope you can make the clinical trials and thanks for the link you sent. Take care and I'll keep in touch. Cathy

Thank you! I'll look forward to hearing from him. Cathy

It has been ages since I've posted. This has been a rough year with my POTS. Does anyone else have problems swallowing? It has been extremely hard lately. I have GI problems, but this is really something. Thanks for any comfort.