Mary P

Hi Maxine, I empathize with you so much and understand your pain. Reading your post made me angry all over again. On July 16 I saw a neorophysiologist, the most arrogant bully I've ever seen in my entire life. You mentioned 'arrogance walking in the door', and that's precisely what we experienced. I wonder how many people these horrible doctors destroy rather than help. I wonder if they even like their work. I wonder if they like themselves. I too hope that you get the much-needed help to get your tooth fixed and so get you feeling stronger and better. Mary F

This post/read has been a wonderful way to start the day. If only every patient could have the experience you've had! Earlier this a.m. I listened to a radio program called 'White Coat, Black Art'. It has been on once a week for the past 3 months. Today's topic was about how doctors treat their patients and the doctors speaking must have been among those who treat us with respect. I'm so happy for you and I hope you're much better today. It's too bad that your story couldn't be posted on the wall of every nasty doctor! I wonder if it would really make any difference? Mary P

You are so very strong and courageous, Ernie. With what you endure each day, I don't know how you do it, but your family must be so thankful for you. I'm sure that as your niece and other family members begin to understand the condition and get treatment, they'll provide more strength for you to carry on. They won't have the struggles of unbelieving doctors when they have you as mentor, guide and knowledgeable support. All the best to all your family as testing proceeds. You are all in my thoughts and prayers. Mary P

I haven't been on any meds so that isn't what's causing my problem. The first symptoms for me were unusually low BP, extreme fatigue, light-headedness and loss of balance. Then one day on my walk, I realized that something really worrisome was happening. I was barely able to make it home because suddenly my legs became heavy, achy and tired. I felt like I was dragging 100 lb weights along with me. Research suggested that this was due to my varicose veins. An ultra sound at a vein clinic showed that blood was pooling in my legs and this caused my leg problem. Still, I'd had varicose veins before and never had the heavy, etc, legs. Things worsened and symptoms increased so I finally saw a neurologist who diagnosed PAF or OH. I came to realize that both the veins and OH contributed to the problem. The vein clinic doctor told me that vein removal would not eliminate the fatigue, loss of balance, etc, so perhaps he knew that something else was wrong as well but didn't feel it was his plsce to inform me of his suspicions. Mary P

I agree totally that you need to reduce the list quite a bit. When I showed my GP my list of symptoms, she glanced very briefly at it and handed it back to me. Had I asked her, I doubt that she could have repeated even one of them. I imagine the list was overwhelming for her. So, I chose just 3 of the most bothersome and we talked about these. I'm glad for your post because I also know now what I must do, to try to get my GP to pay some attention to what I need to get across to her. Good luck to you and to all of us who seek help and answers. Mary P

I have no choice because where I live I can't change doctors. The first N I saw diagnosed PAF but said I shouldn't return to him because my GP had to take over and get me the care I would need. However, my GP admits that she knows nothing, yet neither has she ever tried to learn anything. I have to keep feeding her info with the hopes that eventually something will help her to know what I'm going through....enough to make her care. For example, I made her very aware of my all-over muscle weakness and ache. Still, she prescribed a sleep aid that caused a terrible reaction..additional muscle weakness and pain, anxiety and a sort of restlessness which I've never experienced throughout my entire life. On checking for side effects the next day I read where anyone with muscle weakness should avoid the med she prescribed. I'll have to write about this for my next visit and keep a copy for myself. Hopefully she will learn what not to prescribe any more. I see an ANS doctor next week and will ask him to write a detailed report for my GP. I'm scared to death that she'll have no idea what to do should I need a change in the med(s) prescribed, etc, etc. I had to make the appt with the ANS doctor myself because my GP had absolutely no idea who to seek out. etc. Through the Meet Others Program I've been in touch with a woman who has learned a great deal over the years. She put me in touch with the ANS doctor and his lab in Montreal. She has been a godsend for me and has provided me with the help that my GP can't provide. Mary P

I drink gatorade. I also drink 1 can of beef broth/day, mixed with an equal amount of water. As with water alone, it's easier to consume the broth when slightly heated. I can't tolerate too salty a taste so the water makes it easier to get the broth down and I'm still getting the same amount of sodium. I'll soon try the chicken broth. Mary P

I burp a lot and I figure it's because I must swallow a lot of air when I eat and drink. I haven't mentioned this to my GP because she'll probably tell me that it's another symptom of getting old. This has been her favourite response for several years now. Or else it's sure to be yet another a symptom of depression, another favourite response. If she were to tell me that it's in my head, well, she'd be partially correct. It may not begin in my head but I guess that's where it ends up before actually being released. Perhaps I won't tell her at all because I don't need to be told yet again that I'm a depressed old patient. ha ha Mary P

Hi Lindajoy, What a wonderful and selfless act you are undertaking by forming a support group for others. You will be reaching out to others who may very well have been treated just as shabbily and disrespectfully as you have. With the hospital allowing you to host the get-togethers there, this says a lot for your determination not to let the doctors hold total power over you. Good for you and the best of luck with this venture. I could never begin a group as you have but I'd surely be among the first to join should I ever hear of one in my area. You go girl!! Mary P

Hi Carinara, I can't even begin to understand the added stress your partner brings to your life. We all know that POTS is already more than enough. I can't remember what everyone wrote but what you endure is a form of abuse, and I'm sure your family/friends would help in every way possible if they knew the full extent of this. The roller coaster ride of your partner's moods are stressful and therefore destructive as well. I rely totally on friends and a son to give all the help I need and they're more than willing to do and do for me. They know I'd do the same for them. I'll bet your family and friends would want to do everything possible to make things better for you. I also agree that you need to talk with your daughter. Watching you suffer will surely impact negatively on her school life, social life, etc. So your partner is also abusing your daughter. We know that a child who watches a parent suffer abuse may one day allow a man to abuse her because she may think it's normal to live this way. Can you turn to a pastor for help? I feel very strongly that somehow, someway, you have to remove yourself from this abuse. If you can't see how this can be accomplished, an honest heart-to-heart talk with family and friends will surely help you realize what you and must do for yourself and your daughter. She must be in much pain. I pray that you'll find the answer as to how to bring this abuse to an end and a.s.a.p. You need to be able to live in peace with your daughter. Mary P

Hi, I'm so sorry to hear of all you've been through. It's bad enough when one is 'normal' and in the hospital, let alone an ans patient and knowing that no one knows how to treat you effectively and with respect. When I read your posts and other posts about so little knowledge and help from the medical community, it makes me furious. When I did some of my first research on ans, I read that most GPs and nurses know nothing and so don't take us seriously. A study of ans should be every bit as much a part of becoming a GP as diabetes or heart disease are. I pray that what's to come will be of great benefit to you. You deserve nothing less. Mary P

Me too. I'll offer special prayers in church tomorrow. Mary P

Happy Birthday, Ernie!! It has made my day to open up your post and read your heart-warming story. I've often wondered what your story is because over and over you have shown your support for others. You have a kind thought for everyone who turns to this forum to share what's happening in our lives. I pray that your remission becomes, year by year, a lifetime remission. You have shown great courage and determination in getting to this point. Mary P

Hi Joe, Thanks a million for this list. I've had no guidline and my GP didn't know what amount of sodiun I should be getting each day, so this list will be most helpful to me. The only salt I got for years would have been from natural foods and I never had pop, snack foods, etc. It has been a challenge to get used to adding salt when cooking or at the table. Have a great weekend. Mary P

I know that I'm not getting nearly enough salt. I have no way of counting the g per day and can't find a www list of 'high sodium foods. Joe, you mentioned sending such a list via e-mail to someone else, and I wonder if I could get this. If so, would you please let me know how I send you my e-mail address. I'm not very computer savey but does it help to tell you that I'm on the list of Meet Others Program. Thanks for any help. Mary P

Absolutely, I'll participate and will put a candle out right now to remind me to do this. Mary P

Hi Carly, Welcome to this forum. Everyone here will listen and understand and support you in every way possible. I echo Helen T's comments 100 %, to pace yourself and take things easy even on the good days. Pushing yourself isn't worth the crash that will always follow. It's difficult not to want to want to 'make up for lost time' when a good day comes our way. Having said this, I must also confess that I haven't always done what I know my body needs and expects of me. Sometimes this is my own doing and at other times I can't always say to others, "I need to lie down now", "I have to go home now", etc. You'll find that you have to set limits for family and friends as you must do for yourself. I wish you the best in locating doctors who will listen and respond in a caring and supportive way. Mary P

It's so interesting to read all these posts and really love the humour involved. You keep up our spirits, so keep up your good work! Your humour makes me think that it would be a real hoot to get together to share....evrything and anything! There would be a lot of onlookers/listeners who would wonder what in the world was going on. With voices getting weaker and weaker, we'd probably wind up our day by passing notes around! I've noticed for about 2 months now how my voice can get very weak and almost disappear at times. Not that I've ever had anything close to a singing voice, but that's totally gone now. Heavens to Betsy....what's next?! Something else to record in my journal. I just saw my GP 3 days ago and was fine at that time so I didn't mention it to her. There's no way that I'll ever get another app. for 2 more months and will ask to see an ENT then. Having read your posts, I'm anxious to see what's going on. I've had chronic sinusitis for at least 20 years and, on and off, have had some sort of dripping into my throat. This has caused coughing and scratchiness but this loss of voice hasn't happened until just recently. Mary P

And also in my daily prayers. Mary P

Bren, Sorry to take so long in answering "What is PAF?". However, I see where Persephone wrote of one way of checking. You can also google Pure Autonomic Failure and there are numerous good sites there. You'll see that PAF is mainly a chronic condition for older people, but like so many autonomic conditions it can occur in people of all ages. Are you keeping a journal of your daughter's BP and HR, first when she's lying down, then when standing? Or, when she's sitting, then standing? This is imp. and was a great help when I first saw a neur. I also kept track of what was happening in my life from day to day, and especially what I'd been doing just before I'd taken BP and HR readings. It's imp. to record both the BP and HR readings. Everything in the journal was a great help to the neur. Also, I didn't have to remember so much. After his first question, I just handed him a copy of the journal and we were both grateful that I had kept this. I've continued this in preparation for an appt with at an autonomic teasting lab and another neur. Has your daughter had any seizure-type episodes? I had 2 of these, both where I'd gone for what turned out to be too long a walk. I barely made it home on my wobbly legs. I felt like I was dragging 100 lb weights with each step and collapsed onto the nearest sofa, as stiff as a board, unaware of what was happening around me. After a couple of minutes I fell asleep for about 3 hours and when I awoke I was still shaken and fatigued for the next 2-3 days, but happy to have come through these episodes. At those times I was unable to record any readings, but a pharmacist friend told me that they were most probably caused when my BP fell excessively low and so blood pooled excessively in my legs. Now I take only 5 min walks. To a much lesser degree, the same thing happens when I do too much work and without even realizing what is creeping up on me. Good luck in whatever has to be done to lead to an accurate diagnosis and the resulting treatment(s) which will truly help your daughter. I'll look forward to reading any future posts. Mary P

Without any doubt whatsoever, I've received the most help from this forum and from a woman I've met through the Meet Others Program. She contacted me as soon as she saw my name on this list and I can't begin to say how helpful she has been. I'd still be struggling on my own had it not been for this forum and my new found friend from the M O P. I'll see my GP this p.m. and I'm going to tell her about all of you. Mary P

I know how you all feel. I can't tolerate the heat, and where I live, the humidity as well. For these past 4 1/2 days the temps here have been 40-42 celcius and for me that's like living in a furnace. I won't go outdoors at all but stay inside with the AC running, where I feel safe. One blast of such heat makes me nauteous. Mary P

Hi Bren, I've had what you describe as 'rag doll legs' for over year now. My legs would give out and I would slide to the floor or ground....when I got out of bed, walked too far, stood too long, etc. I've made changes to try to make sure these don't happen again. I was diagnosed with PAF and I have varicose veins. With both of these conditions, blood pools in my legs and I was told that this causes wobbly legs... like they're made of jello. However, I think that the rag doll legs are due to PAF alone because I had varicose veins at ages 43 and 50 and didn't have rag doll legs during those times. However, your daughter became unwell at age 17, and for me this was at age 68 so I don't know if this makes any difference in this situation. I was very active before the extreme fatigue and other symptoms dealt me a blow. I consider myself blessed that I wasn't as young as many of this forum's members are. I'll remember you and your daughter in my prayers. Mary P Your daughter is so young

Hi to all, Thanks kindly to everyone on this forum. I'm truly grateful for all your stories about Midodrine dosages and experiences, also for all I've read about Florinef on this forum. I'll see my GP this Wed to ask her to forward all pertinent info to a Neur who tests for various types of Dysautonomia. He has already agreed to see me once he gets this info. My Gp doesn't know about Midodrine and I'm hoping that he'll provide her with lots of help because she doesn't know what to do. Ernie, what do you mean by goosebump? Mary P

I thought it might be interesting to find out what household task we find difficult. For me, it has to do with 'beds'. It's difficult to make a bed...all the stretching, reaching, tucking, etc. It's even more impossible to fold sheets in a half-decent way. I have to spread the flat sheet on the bed and then go around and around, from side to side, folding it bit by bit. No matter what, it looks pretty sad when I'm done. As for the fitted ones, well, forget about that! I have to be happy if the bundle I manage to make fits into the closet fairly well. It's all quite frustrating and only serves to make the use of my arms even less efficient than when I started. I can get out of breath, light-headed and nauteous. My heart begins to race, etc, and I have to lie down. Yesterday I decided that enough is enough and I eliminated part of the problem...the folding. From now on I'll wash and use the same set over and over. If a family member is here on laundry day I'll ask him/her to make a change for me.