purplefocus

Hey all, its been awhile since I have been on here, but wanted to see if anyone had every experienced anything like this? Yesterday (around 1pm) I was feeling really tired (I had sorta felt bad all day), so I laid down, well I remember my boyfriend trying to wake me and I just could not get all the way woke up, sorta felt like the way you do when you are coming out of anesthesia. Anyway, I obviously fell back to sleep. When I woke up again I was in the emergency room and my ex husband (lol) was beside my bed. I really honestly thought I was dreaming. I must have looked frightened, he reassured me I was gonna be fine and our kids were fine. I tried to ask him what was going on and I could NOT speak, my mouth would move but no words would come out, I knew what I wanted to say but nothing not even a whisper would come out. It totally freaked me out, then more of my friends and family started coming in and I found out that I had gotten completely unresponsive for awhile at my house and the paramedics brought me to the ER, I have no memory of this whatsoever. I do have the normal spells where I pass out but they normally last about 3 to 5 minutes. Of course at the ER, I had the normal ct scan and lab works, the only thing that was off was my bp was a little low. ....anyway they admitted me and gave me neon green iv fluids LOL.....about 2am I was able to talk, I am not sure why but I wanted to turn the lights out in the room and I was getting frustrated and I said something and it actually was audible so I called the nurse and she called the doctor and told him. Well this morning, I had 4 specialist come in my room, telling me they want to run all these test. I explain to them I'm talking now, and I'm feeling fine. One doctors theory is he thinks i'm having silent seizures and being unable to speak was a residual effect, another one thinks I have had a lot of stress lately and that caused me not to be able to talk????????? Anyway, they released me today about 1pm, still no answer, just an appointment to follow up with them in 2 weeks??????????? Has this happen to any of you? Paige

Thank you for all your support. I got out of the house tonite and went to cracker barrel with my boys. It was so hard but I made it and I think they really enjoyed it also. When I left the house, my neighbor asked me had I been on a trip or something that she had not seen me in months. I think I took a huge step by getting out tonite. I am so exhausted but I feel better also if that makes sense. I didn't think I was gonna get back up my steps but I did manage. I really appreciate all of your responses, it really makes a difference. Thanks Thanks Thanks Paige

It has been along time since I have been in this forum. I got into a huge depression and just withdrew myself from everything. I'm trying to get myself out of it. I stay in my house all the time, I never get out. Its just not worth it. By the time I get a shower I'm so exhausted that I just go back to bed. My quality of life is horrible and I'm so frustrated. I have another appointment with my doctor on the 20th. I hope there is something that will help bring me up. I have been reading some of the post on here and it has actually made me feel better knowing that I'm not alone in how I feel. I have been dealing with this for 7 years and I was doing good. Then my life took a turn and my husband decided we were no longer good for each other (this has been almost a year ago) so I now live in an duplex with stairs with my 2 sons (ages 7 and 18). My 18 year old does all the shopping for us. I feel like a prisoner in my home because of the stairs. I get afraid that if I walk down them I will not be able to walk back up them so I just stay inside. I feel frustrated because Idont feel like getting out and doing things with my youngest. I guess I'm just looking for some encouragment. I went from being a very active mom, participating wife and full time nurse to a blob in a bed. That is pretty sad, huh? Paige

I so know what you are talking about. I have had people to accuse me of drinking or being drunk............very frustrating.

Hello Everybody, I am Paige and I use to be on here alot. It has been a very long time since I have been around. I had gotten really down with the dysautonomia symptoms and depressed and just crawled into a whole. But I do want to share something with you all that has happen in the past few months. I think stress has more to do with what brings on my symptoms more than anything else. Just read this. About 2 1/2 months ago I moved away from where I had lived all my life. I moved almost 200 miles away from there. Well I was sick most of my time...rarely having good days....since I have moved I rarely have had bad days. I have had a few but I can probably count on one hand since I have been here. I know my doctor always asked me when I would first see her , how is your stress level? I moved away from all the stress that haunted me........ex family lived in the same block I did.....all of them.....my whole life that was with my ex...freinds and all was around me and turned on me....I had constant reminders of my moms death there tooo....so much horrible stuff....i did have good memories but with out realizing it I think I was living under such attack. Anyway now I feel like a new woman and I am so truly happy and I can be who I really am without walking down the street being talked about or whispered about and I really think it has made a difference. So I don't know the situation you are in but if it a stressful situation that can be calmed down it is worth a try. I am at the point of asking my doctor what she thinks about me going back to work. It has been over 5 years since I have worked. Now I know the dysautonomia brought on alot of stress itself but this is so different. I wake up with energy....I have it all day long. If you have any questions please ask. I am still on medication and the CPap....which I think works amazing but I really think the stress is been my biggest thing. Paige

Hi, I'm so sorry you had to deal with this uninformed person. The medical staff makes me so angry when they are so hardheaded and just trying to get you out of the door. I am a nurse myself and I never jumped to conclusions or if I had my suspicions about someone I kept it to myself. You need to find another doctor. They are out there, you just have to weed out the bad ones. I worked with so many doctors and nurses in the past that I really wondered where they got there licenses.......I don't think some of them came from any college. It was scary. I got the actress award also, I was so good that I even passed out and pulled down the IV pole with me, ripping the IV catheter out of my hand.......I think I should have got an Oscar since the nurse said I was faking. I think most of us here have been thru this and you just have to keep looking. You will find one that knows and understand and will be able to help you. I have an excellent dysautonomia doctor but it took awhile to find her. Good luck. Paige

Dr. Moore is my doctor. She is truly a wonderful person. She never once made me feel like I was crazy or that is was all in my head. She has tried numerous things with me........not only medication and she won't give up on trying to get me to a better quality of life. When ever I have had to call the office I always get a quick call back. I have nothing but praises for her and the staff. She has done so much for me and is still trying. I know I am in a better place than before I was going to her. I was passing out 4 to 5 times a week and now it is down to a few times a month. I think with her help I will eventually be able to get back to work. She is the type that will listen to you......doesn't make you feel rushed........and she talks to you about you treatment. She has even called me back to check on me when I was having a horrible crisis. She's great. Paige

I'm glad you are going to talk with your doctor. My legs hurt all the time to the point I could not stand to put much weight on them. They would feel numb and tingly and just plain hurt.........it didn't matter if I put them up, down, side ways, upside down. My doctor tried to do a nerve test and after a short time I just could not tolerate it, he went ahead and started me on Neurotin and it helped wonderfully. I was at the stage of being driven everywhere and once we got to where ever I got out at the front, went in the front door and sat down.........I only went to the doctor, Walmart......that is about it. My sister even went to purchase me a cane but I pleaded with her not to. I was just so stubborn that I refused I had a problem. That has been about a year and half ago and about 6 months ago it seems like the pain has basically went away. I have drastically cut down on the medicine and still no pain and I walk (although short lengths due to fatigue) without problems. Don't give up. See what you doctor has to say. Paige

I know I would like at least 2 that is if they come in size for the fluffy women. Like everyone else after seeing design and price probably more. Paige

FATIGUE

Hi, I got approved on the first try. What I think helped with my case is the detailed of daily living activities. I left nothing out. In many cases I compared what I can do now to how much more of that activity I was able to do before. I do mean everything from trying to brush my hair to unable to stand to cook dinner for my family. I tried to think of everything. It might not have been what helped because I did send my medical records but I truly believe it did. Oh you might want to make a copy of what you fill out........I had to fill the activities sheet out a few different times. Good luck. Paige

Hey everybody, Do you remember me? I still come on and read every now and then but I haven't responded to anything in awhile. My life has gotten soooo much better. The severe depression has gotten so much better and I think it is because I finally accepted I have an illness that gives me limitations. I still push myself hard but I don't expect unrealistic things from myself. I still have all the same symptoms regardless of all the medication changes.........with fatigue and slight confusion being the worse. I deal with it so much better now........my family and I just expect that I won't remember to do things so they do silly things like post notes all over the house to remind me to do things...........such as my son needed me to make an appt for him........he left notes on the bathroom mirror, on the computer, on the fridge, on the front door.......and I didn't forget......lol. It feels better that my family is working with me and instead of getting frustrating with me, they are being creative and helping me come up with great ways to cope. Now this one is funny and some might not believe it but it is true. My dishwasher went out and I can't stand a cluttered house so when the dishes started piling up and I couldn't stand up long enough to wash them I was getting so frustrated so I figured out how to fix it.............this is what I did......I got the huge outside trash can and I threw away every plate, saucer, cup, glass, bowl.....except for 4 each for my family and the pots and pans.......if I had two of any kind I threw them away. When my husband came home he couldn't stop laughing. It really has cut down the amount of dirty dishes. Haha! I know it might seem severe but it really made me feel better. The limitations were hard to accept and the not working was the worst but I believe I am at a very good point in my life and believe that there is a reason for everything. I am going to the beach (6) hours away for a 4 day weekend for my nieces wedding.........and I am actually looking forward to it and very excited. I know I will be limited but it doesn't matter.........the things I will be able to do will be great. It is great to come on here and see all the famliar names. Guess I will stop boring everyone now. Just want to say one more thing. I thank everyone in the DINET forum for all the encouraging words from before.......you guys will never know how much you helped me make it from day to day when it seemed like I was slipping deeper into that dark hole. You guys are the most caring people ever and I have benefitted greatly from all of your meaningful words. THANK YOU! Paige

Hi, I'm so sorry about the loss of your sister and all the stress you are going thur. Your symptoms sounds very familiar. I too am also a nurse and have 2 children (4 and 14). It's very important to find out what is really going on with you like they said in the other post..........don't let a doctor just label you. If it truly is POTS then hopefully you can find a doctor that specializes in DYSAUTONOMIA. I don't know if you have been to an ER for any symptoms but those doctors are usually the ones that want to say you are having a panic attack or such (at least that is my experience). It can be difficult to find the right doctor but don't give up looking. I wish you the best and I hope for you it is something you are experiencing that can be completely taken away. You have come to a wonderful and caring site. Paige

Jan, You and Jeff are in my prayers. It makes me very sad to read what ya are having to go thru but no one can say EXACTLY how things will go. Try to get that chin back up and enjoy today. Paige

Becky, I am so proud of what you are doing. I know how devastating this disease is and how employers can be. Sounds like you did an awesome job yesterday. My thougths and prayers will be with you today. purplefocus

HI Everyone, I have had a good day today and I hope that I am heading up out of this depression. Thanks again for all your kind words and advice. I am really listening, just very hardheaded. I'm a nurse (haven't worked in over 2 years) and you know how we are! If I get to that dangerous feeling again I will go to the hospital myself, I dont' want to take a gamble, but hopefully it will never happen. I know I have a wonderful husband and 2 precious sons plus I am pretty cool for a girl (my sons comment). You all are great. Paige

Thank you for all the encouragement. I am going thru another stint of insomnia. I believe I feel a little better mentally right now than I have in awhile. I am listening to all of your advice and I agree with the cousenling but right now out patient counseling is just too expensive for our tight budget and it's obvious that going in is not a decision I am gonna make right now. I know my husband doesn't think so and he would work OT to make sure but I don't want to feel that burden right now. I am trying to focus very hard on my children and husband and when those negative feelings start coming down on me I try to push them away. It's like I need a punching bag.............know what I mean? I've tried reading and watching movies but the concentration for it is not there. I have a horrible exhusband......maybe I can take these negative feelings out on him, nice thought but just kidding. See I am feeling better. You guys giving me all your encouraging words and understanding what i'm going thru has helped me so much. I am still not over this but I am so much better than I was two days ago. THANK YA'LL SOOOO MUCH!!!!

BIG FAT FAILURE...............Guys I couldn't do it. I begged my husband not to take me and to let me try to work it out on my on. I was just toooooo scaredto be admitted. Now I feel like such a failure. I was so close. Thank you for all the wonderful support, maybe tomorrow will look different.

Thank you everyone for your kind words. I am leaving in about 5 minutes.to be admitted. I have a lot of reservations and extremely scared. I just don't want to be a zombie but I know that I'm not safe like I am now. All the kind words mean so much to me. Those that mentioned your family. I have a very supportive family but I just feel like I am too much of a burden. When I get out I will come back on and let everyone know how i'm doing. Hopefully it will all be positive........and also I got my dysautonomia bracelet and I plan on wearing it. Paige (purplefocus)

Hi everyone, I know I haven't been on here in a while but I have been reading some of the stuff off and on. It just hasn't been good for me lately. Please keep me in your thougths and prayers. I am being admitted in the next hours or so for severe depression. I am terrified because I do not know what will happen. Hopefully they can help me so I can put all these scary thougths behind me. The feeling of worthlessness (because of the disabling of dyautonomia) is not something I can go on living with. I hope everyone is doing ok. Paige (purplefocus)

Sue, OH, i'm so sorry this has happen. I am praying for your neice and family. purplefocus

Mary, So sorry you are having to go thru all this. You and your family are in my prayers. purplefocus

There is nothing I can add that hasn't already been said, other than you will be in my constant prayers and thoughts. purplefocus

THANK YOU everyone. I did manage to get thur yesterday and I am feeling so much better today mentally and emotionally. The encouragement I recieved from you all helped so much plus I took the advice and talked to my family. Those of you that are in the same place, just like me, you will come out of it. purplefocus

My screen name came from my love for the color purple and the word focus was used for an acronym that I learned from camp years ago. So I just put them together. Made sense to me........lol. I feel so much better today, thanks for everyones encouragement yesterday. purplefocus