DawnA

It is hard not to burst into live and not enjoy every moment when you are feeling well. It is so easy to overdo. You just want to live life to the fullest. I hope your party for tommorow is canceled. I am sorry you are sick. What a dissapointment!! Rest well, drink lots and dream happy dreams. Have a speedy recovery. Dawn

Has anyone heard from purplefocus, forgive me I can not remember her first name. I have not seen any posts from her since her I'm scared post , when we were all so worried about her medically. I am hoping she is OK. Purple focus are you out there? Dawn

I am sorry about your friend. It is so hard to watch a loved on suffer. I will pray for a short journey to everlasting peace. You are alwo in my thoughts and prayers. Dawn

I am sorry to hear that your daughter is having so many problems. My 13 year old missed a lot of school last year due to fatique and migraines. It was a very ahrd year because she also had to drop out of gymnastics which she a excelled at in the past. I remember my concern about her emotional wellbeing. Fortuantely, her symptoms are minimal now and she gets very few migraines. She is just so happy to be feeling better and is making up for watch she had missed out on socially. She now seems very happy and well adjusted. My heart goes out to you and your daughter. Thsi must be very difficult. Amonth appointment is a long way off when it comes to a child. Is she on any medication? Has she increased salt intake. I always had a hard time getting my daughter to drink enough fluids. She likes to drink propel an electrolyte drink. I wish I could do something to help. I hope you can get some more answers at her next appointment. Dawn

Hi Kathy Welcome to the forum. You have found a wonderful group of people. Has your daughter had an TTT (tilt table test). This would help narrow down what kind of autonomic problem she has. What kind of autonomic test has she had done? I have POTS, small fiber neuropathy, and myopathy. Both of my daughters seem to be affected by autonomic symptoms. My 13 yr old was just diagnosed with Autonomic neuropathy and POTS. My nine year has symptoms similiar to your daughter. I think it is time for her to be tested. She has been diagnosed with OCD, anxiety disorder and Crohns disease. Your post reminded me to look furthur into her symptoms and request autonomic testing. I hope that with some medical treatment your daughter can start feeling better and have some of her anxiety symptoms subside. It is heartbreaking to watch your child suffer from disabling anxiety. Best Wishes, Dawn

Latkes must be potatoe pancakes...oooh that sounds good. I have been craving those for a long time. Maybe I can get my husband or kids to help with making them. I love my stool in the kitchen. My daughter with POTS uses one too. As far as seeing people for there difference...I love peoples differences. I appreciate people differences and embrace them, it adds spice to life.What I feel the problem is is when we judge those differences! We all need to accept one another for who they are! Happy Holidays Dawn

I happen to like whine and cheese!!!!I am glad that you posted. I am sooo sorry that you have been going through a hard time. It is hard to post or read posts when you are feeling lousey or down. I am soo sorry about your hearing loss. Taht is a real bummer. I hate to bring up bad stuff! But have you had a workup for muscular dystrophy or mitochondrial myopathy. Your hearing loss, muscle weakness and dysautnomia may all be connected. I just wanted to mention this. You are in my thoughts and prayers. Keep your head held high and remember that you are missed when you have not posted. We are here to support you. Take care! Dawn

Welcome to the forum Ayelet! Your english is beautiful, I am impressed. All this talk about different countries makes me want to travel. As far as heat goes, I avoid it as much as possible. That would hard for you. Last year, we were blessed with a cool summer. I live in Wisconsin. When I do have to go in the heat I make sure to drink propel ; it is filled with electrolytes. Some kind of electrolye drink may be helpful. Best Wishes, Dawn

HI Merrill, I have had 7 MRI's. One was a complete body scan, which took alooong time. I thought I would have problems so the first one I took valium. I have not since and usually sleep through them. I have major fatique problemsBut it would be hard if you are in a lot of pain and it is difficult to sit still. I have had a hard time when I was not allowed to swallow for a period of time. On my last one I ahd a hard time breathing while I was flat and thought i was not going to make it, but I did. hope this info helps. Good luck and I am sorry to hear you are having spinal problems. Dawn

Ernie, glad you got out to do some shopping. I hope you got some nice outfits. About the rude self absorbed lady...well a lot of people seem to get like that around the holidays. It can be such a stressful time!!!! I bet she feels really bad about what she said. I am sure it felt awful when she said it, when it took a lot of courage to get out. Like you since I have become ill (3 1/2 yrs), I really no longer have friends. My closest friends moved away and the others have disappeared. I do not really ahve the energy to socialize, I save all that I have for my kids. From being ill, I feel like I have developed a social phobia. To many bad experiances have happened around others and it gets harder and harder to reach out. I wonder how many others feel this way. Dawn

Congrats on passing your comps!!! Also Merry Christmas and Happy Hannakah have a wonderful trip. It sounds great. Dawn

Hi James I want to welcome you on board. I agree that you need to have some furthur testing done to figure out more about what is going on. The fact that you have panic attacks does not make you not normal either does your anxiety. What is normal anyway???? But it is so hard to feel normal when this is going on. I have been there. I am doing much better with treatment. Having panic attacks is awful and I feel for you. Hopefully with further testing you can get some treatment to ease the symptoms. Don't be afraid to ask any questions. There are a lot of wonderful people here. Best Wishes, Dawn

Welcome Juli, it is nice to have you on board. Looking forward to getting to know you. Dawn

Yes it is a process! The Dr/patient relationship is a process of building or as you are doing (so Am I) letting go. This is a long process with our appointments so spread out. To me it is a hard relationship because we have so little acsess and minimal control to this relationship. Yet we have or are expected to put so much trust into it. Letting go of something you wanted to trust and had hope that it was goodis so hard. Ltting go is a hard process when so much has been invested in this relationship. SOrry, sometimes my wording is a little odd, my brain sometimes has a hard time getting my thoughts out. The thought of starting this process over is sooo scarey. The fear of the past repeating itself. But that won't happen, the past experiances are learning processes which will prevent this hopefully. I used to think of myself as a patient person. I do not think I can be very paotient anymore. I wish you the best in finding a new Dr. I really feel for you. I feel very blessed to have a great PCP who has been very supportive with me and my decisions to fire past neurologists. I hope you find someone soon. Best WIshes, dawn

When I first read this post I did not know how to reply!! It mad me angry at how you were treated. Well you have had a lot of replies and good advice. i have nothing to sayother than I am sorry your Dr treated you this way. He difinitely needs firing and hopefully in the long wrong you will get a better Dr. Dawn

Welcome sarina! It is nice to have you here. Not only are you mature beyond years, you seem very bright. I admire that you have so much knowledge regarding your illness. I have a daughter who is 13 with POTS. She is not affected very bad and is doing very well these days. I do not even think she knows how to spell dysautonomia. I am sorry you are having a difficult time with POTs. I hope you get the support and knowledge you need from this forum. dawn

I am doing better, it is out of my system, but I am sure i will pay for it. Benadyal...now why didnt I think of that.! Amazing the stupid things we do when we have brainfog. Half bottle of cough medicine I think I would be out all week. Dawn

Hi I took nyquil last night. I should of known better. My nose was running so much I could not sleep. Big mistake!!!I feel like jumping out of my skin. the anxiety?restlesness is so bad I don't know what to do. It is such a hard feeling to describe. Anyone else make this mistake? Dawn

Funny thing is I was thinking about you earlier today relizing that I have not seen your posts for a while. I am glad that you have some answers and I will pray these answers will lead to permanant relief from POTS. However you will have to visit us once and a while. I have a feeling that I am here for life. Take care of yourself and the precious life inside. Dawn

I really enjoy reading your tidbits of info. Thanks for doing this Dawn

Wow that was fast! I just got my bracelet! It is great. i can not wait for people to ask about it. Thanks to all involved in this! Dawn

I seem to get this problem with a lot of stresserssuch as weather change, too much activity...most of all right before my period. That is usually a painful week for me. Dawn

Thanks for all of the wonderful replies...Nina, Emily, geneva, and Angela! Angela, when you are on stage doing the nutcracker we will all be there maybe not in body but in thoughts. I hope and pray that your POTS is shortlived and caused by a virus. You have so much passion. It is great to hear a young persons dream. I hope your dreams come true. What keeps me pursuing this is my children. Ineed more answers for the sake of my children and their health issues. Most of all I need more information for the sake of my grandchildren. I have learned the hard way in life that usually my gut instinct is usually correct. I will not let any Drs tell me how I feel or should fee. Emily, thanks...I am at the point where I have lost my patience. I no longer am messing with any Drs that do not take me seriously. I gave my neurologist too many chances...shich other Drs have told me. I missed out on going to the best neuromuscular Dr in the Midwest because she would not give me up as a patient the good Dr was her associate. He would not take me as a patient without her permission. I am feeling very positive right now about seeing Dr WHiteman at Mayo. At least my evaluation will be thorough. I have been told he is very good. I wonder if I will end up in the neurology dept. They denied me on two occasions. I wonder how long I will be there. Unfortuanately my appointment is on a Thursday. Dawn Anich

I hope you can start feeling better so you can enjoy the holidays. It is too bad you have to wait for the new year to get referals. God Bless! Dawn Anich

Good suggestion on lowering the beta blocker. A few years back I was overmedicated on a beta- blocker and was unable to get out of bed. This went on for months. Then my beta-blocker was changed and the dose lowered. This helped a lot. Dawn