Like so many of you,I keep developing new symptoms which may ,or may not be Chiari related.Trying to work out which is and what isn`t is very frustrating.I have recently developed an itchy red ,measle like rash on my arms and I was wondering if anyone else has had this problem .I don`t know if it could be because of a medication allergy or not ,but I can`t bring myself to consult a doctor ,yet again,for another new ailment.I already think they think I`m crazy.I have read that this can be a CM issue,but I would like to know if many of you have had a similar problem and if anything helps.I`ve tried antihistamines but they don`t help.I think it may be nerve related.Any thoughts about this?
Sorry for the delay in replying.The doctor thinks it is possibly photosensitive reaction, but could also be medication related.He will try changing pain meds.Thanks for asking.
Hi, I SO understand why you don't want to go to doc again! :-) Yes they think I am crazy too, even though it took a heart attack, and life flight, and 2 weeks in ICU 3 years ago to convince them 'something' was wrong---then they diagnosed Chiari. BUT gave me NO referrals (except to a cardiologist -who could find nothing) Tachycardia is a way of life for me now. I was so active until 3 years ago! Now I spend a lot of time lying down and HATE IT! I have Chiari-but I have no doctor care. EVERY one of the docs I have spoken to here either do not know what it is, tell me it is 'common" ailment, and that I have 'anxiety" and not to worry about it. YES I have anxiety, from not knowing what is wrong with me, AND that the docs told me>>>> I was going to die-they joked "everyone will die....". I live with the pain. I am more scared of the doctors than the pain. I do not trust docs anymore. I am scared and sad. WE are the ones that must do all the diagnostics---they do tests to confirm what we say. I need a caring EXPERT in Chiari. I want to help others-HOW? Please help me understand what is happening to me. Will tis kill me or make me go completely blind? I feel so alone :-(
I am a little behind in our time zone , sorry for the delay.I totally understand how you feel,I too have had two major heart attacks that I now believe to be Chiari related.Tachiycardia has been with me for a long time ,as well as many other symptoms.It is a comfort to hear from another person who is going through a similar experience but I am sad as well that you are in so much pain.Without going into too much detail ,I have decided that doctors and medicine do not hold a great deal of hope for me,but I still wait for something to give.I am greeted with a huge amount of negative attitude from doctors who think that I am over reacting to my symptoms,but who wouldn`t when you feel this bad.Yes I have extreme anxiety as well and I understand how you feel,but I have also realised that medications ,in one form or another make, me personally, feel worse in the long run.I am now seeking out "alternative"ways of coping with my problems and I have found many different kinds on the internet, that at one time in my life I thought were "out there"in their beliefs.I think we live in a very spiritual time in our history and that we can find help in some of these ways.I am in no way advocating ,any one of these "alternatives" individually,but I am finding that my mind has become a lot more open to other possibilities .It is my only choice,since contemporary medicine has treated me so cruelly.This is not a gripe ,as there are many caring and competent doctors that I have seen eg. the ones who saved me from my very severe heart attacks,and others.But ,I believe there are some who cause harm to patience because of their attitude and arrogance.I have even found that ,the very act of being involved in seeking these "alternatives"has helped me to stop focusing on my pain,with some benefit.I also looked for a Chiari expert,only to find surgeons that have little knowledge of what it is like to live with even a"borderline herniation".I don`t know why this is happening to any of us ,but we have come this far for a reason.I definitely believe that this is true.Even the fact that I am saying this to you means their is a connection, and therefore hope.You are not alone.There are many in our position,and each is finding their own way, as well as with the help from people on this site who have their own stories to tell.I was recently very negative,but I have decided that I am not giving in to this horrible syndrome called "CHIARI".I hope I have not offended anyone with this reply but I truly would like to help in some way.And Vix, I hope, I have at least helped you .