purplefocus

I need advice. I have read that several of ya experience numbness and tingling of your hands, especially when they are elevated such as brushing your hair, well for the past several days my hands have been "going to sleep" when I am simply not doing anything. Like right now just typing they feel that way. The only way I can get relief is to hold them down to my side. It doesn't take like 20 minutes of me doing something. The numbness now starts just as soon as I do anything, such as, wash dishes, type, hold a telephone, write, etc. How do you guys deal with this. I also am experiencing burning and tingling sensations in my upper thighs, have ya had this? I have had the leg numbness and tingling with the pain sensation in my lower legs but it isn't as bad as the hands. I guess more than anything it is annoying. I have to stop about ever 5 words I type to hang my hands down so then I can resume the typing. Just plain frustrating. Paige

Hi Danelle, I am from Alabama, not as far as some of the folks around here. I understand not being able to work all to well. Just be patient, good time will come. I am a nurse and not one of my coworkers (or should I say was a nurse) had never heard of this nor had I. Paige

Just as Danelle's comment.........ditto ditto and ditto Without this forum, I would be lost on most days. I may not respond all the time but just reading what everyone else is doing helps me get thru. You all are wonderful. Hope the bunny finds ya Sunday. Paige

Due to not being able to work and the high cost of my insurance and the fact that we went from a two income family to a one income family, there just isn't any way to keep my medical insurance if I want to keep my house and electricity I am in the process of the disability insurance stuff but I know that is an iffy and if I am approved it takes a long time. Do any of you get by without medical insurance and if you do, HOW do you do it? I have a regular doctor and I think he would continue to give my prescriptions over the phone but I wouldn't be able to go see him and forget if I needed to go to the hospital. Geez don't we have a wonderful thing screwing with our life here. Not only do I have to deal with the financial issues but also the other part of feeling like I am not contributing to life and my career has gone down the drain. Ok I guess I am having a pity party here..........woe is me Paige

Me why you doctor prescribed this for you. I also am interested in the strength and frequency that you take it. My doctor prescribed this for me to take 300 mg at bedtime for neuralgia. I have seen where people say that they take it when needed for pain. Does it really work like that? Also, have any of you had side effects from this med. Thanks for this site and everyone here. I felt like I was so alone with this until I found this site. Paige

Danelle, Hi, I too was scared to death when I was trying to find out what was happening to me. Finding this site has brought such calmness to my life. Now, about your husband, try to slowly lead him to this site, i'm sure he is scared also, you are his wife and he is fearful for you, if he shows resistance to learning then try other support people.....family, friends, children. Finding that certain someone that can learn about this illness with you that can share in the knowledge of all your symptons and be just a phone call away can be so calming. Send this website to friends and family that may be interested. It really does make a difference. Also being in this forum and knowing you aren't alone, being able to vent and be lifted up is also a great "security blanket". Welcome to this site, it really is a godsend. Paige

Hi Mindy, I also have had the body aches, especially in the legs that would increase at night. I tried all type of over the counter pain meds and nothing helped, my doctor did nerve test on my legs and started me on Neurotin. I rarely have the pain any more. I do however still experience insomnia which I occasionally take Benadryl to help me sleep. About the hot flashes, I use to never sweat, even when I would play hours of soft ball in the Alabama heat, I would sweat very little, now there is times when it is 50 degrees that I will feel like it is about 110 degrees. It doesn't happen often though. I haven't asked my doctor about this yet but I have read numerous post on here that several people have this symptons. I wish you the best. Paige

Sue, I have also gained a considerable amount of weight after having been on Lexapro. Actually my doctor upped my dose about a month ago and I have gained even more. I thought it was the allaround change I was going thru but I really believe now it is the Lexapro. Maybe we should contact our doctors to see if something else would work that wouldn't have this side effect.

I'm glad you are doing better and things with hubby are improving. I also have feelings of "I wonder if hubby will find someone that has more energy and isn't having a bad day all the time" and I also have extreme guilt feelings for not pulling my share as far as holding down a job right now. I just have to remember he married me......me not a disease and he loves me. He never says things to me or does things to make me feel this way it is just me feeling guilt, but it is out of my control just as it is yours. As for the doctor, I think you should make him aware of how wrong he did you. You will find the right doctor and things will be less anxious for you hopefully. Finding this site for me was a Godsend. It is such a comfort. I think everyone on here is so wonderful. I'm glad you have found this site also. Take care and I wish you rest and happiness.

1. My name is Paige 2. Age 37 3. Dx.... POTS and NCS 4. Diagnosed last October 5. Alabama 6. Dizzyness, fainting, no energy, shortness of breath, chest pain, brain fog, difficulty sleeping, tachycardia, low bp, excessive thirst, numbness in hands and arms, and pain in legs 7. Mild fatigue, energy at times during the day but not constant, no passing out for a few days in a row, chest pain and shortness of breath not constant during the day and able to think clearly 8. Low dose of florinef 9. Now on florinef, lexapro, neurotin, atenolol, protonix and neproxen, are they working? Well I do have days where I function for at least half of the day.

I was in the hospital the past 3 days and it was not a fun event. I went in on Monday night. I was sitting at the kitchen table with my family and all of a sudden started having extreme pain in my chest followed immediately by having shortness of breath. After about 30 minutes, the shortness of breath was not any better. My husband took me to the ER. The nurses were ok there, they did the normal protocol for a heart attack and called my regular doctor that treats me for POTS. He had me admitted and ran numerous test to rule out different things since this chest pain was new for me. The problem came in when I passed out in the room, (this of course is a normal thing for me). When the nurses took my blood pressure, it was 108/50, and they made the comment to me,"Wanting to get a little attention hon." It made me feel horrible that I was afraid to call them when I was having chest pain. Not all the nurse was like this but several was. The bad thing is I am a nurse also and I would never do anything like this. Finally my doctor diagnosed me with pleurisy and esophageal sphasm and let me go home. Has any of you had to deal with this and how did you handle them?

I have this feeling also, it is like a deep inside ache in my lower legs. I kept complaining to my doctor of this and I am going tomorrow for a nerve study, my doctor is expecting this to be neuropathy. He has started me on a medication called neurotin for this.

I had a tilt table test yesterday and it wasn't as horrible as I was expecting but it wasn't enjoyable either. The worst part to me was the arterial line and being strapped to the table. After they was watching me awhile they had decided to give me the medicine to see if they could simulate me fainting but I fainted before they had to give me any medicine. They then decided to put me on atenolol. Just curious if you have had this and what it was like for you.

I got a call back on Wed. night that I could come back to work the next morning. I was given no more explanation other than that. I went in that morning and I am a nurse in a nursing home, we have state survey every year and it is a good thing to to have experienced nurses there. Well when I got to work guess who had came in the evening before. Yes, The State Surveyors........I believed that was the only reason I was allowed back to work. When I finally saw my supervisor that morning I told her, Ya were kinda cute calling me back in here while state was here, she just smiled at me. A little later on that day I asked her, when the state surveyors leave will I be allowed to continue to work........she said I 'm working on it. Can ya imagine how mad I was? I worked that day and the next, oh the corporate office made them check my blood pressure twice a day and kept me plenty supplied with water. Well needless to say we haven't got to monday yet, which is my normal off day so I am very curious if I will be asked to leave when I go in tuesday.

I also have a difficult time going to sleep and once I finally do I wake up several times. It is like my brain is on overload. It is rare when I wake up in the moring that I feel rested.

Thank you Mighty Mouse for the information. I emailed a letter to one of the contacts.

I am still staying at home due to the fact I am not allowed to go back to work because the upper management hasn't decided what to do with me. I have been physically able to work but not allowed. They aren't telling me anything except to call the next day that nothing has been decided. The only other thing they are telling me is that I am not being terminated........well I'm not working so therefore I am not being paid, I have used all my sick days and vacation days. Anyone know where I might stand legally with this? If you read this and don't know what I am talking about, check out the topic "How to keep a job with dysautonomia."

New update on my job situation. The corporate office decided to not terminate me. I am sure they see the legal part of it. But they don't know what to do with me. They told my boss I was a "risk managemnent issue". I am suppose to find out monday what is happening, in the meantime I am missing quite a bit of work when actually the past 2 days I felt like I could have worked.

Thank you for all the encouragement. I am a nurse and have been for 16 years. My days at work are very hectic and I am on my feet constantly at times. I love my job and don't want to have to stop working. I have worked when I thought there was no way I was gonna be able to walk down the hall again. Not to long ago I was at work and I became the patient, ( I passed out in a patients room). I get alot of support at work and home. If I could just find a miracle for energy I think I could deal with all the dizzyness and brain fog. Once again thanks for all the encoragement.

I had my first issue of termination due to my excess absents due to dysautonomia. Although my supervisor is aware of my disease she has to go by the policy. I brought in documented evidence from my doctor but she has to present it to her boss before and if they decide to terminate me. It is very frustrating because I have my medical insurance thru this company. I know I can quickly get another job but I would have to wait 3 months before new insurance would go into effect, and unless my symptoms stay more under control I would probably have the same problems with absentees. How have any of you all dealt with this?

I have only had a vague diagnosis for about 2 months. I am currently on florinef. I am newly experiencing the joint pains, but the other symptoms are much better. Mostly I am having extreme mood swings, worse than any pms ever. Constant aggitation and irratibility. Anyone had the same. All information is greatly appreciated. I have learned so much from this site.