[Fl...] Posted January 16, 2018 Share Posted January 16, 2018 Thanks, Sofa. By the way, I cut my Buspar in half Dec. 29 and stopped it completely on Jan. 2. Haven't noticed much difference in the way I feel. Maybe a bit more anxious and irritated for a few days but not much different than my daily horribleness. It wasn't helping me except to make me dizzy and groggy when I took it sometimes. Figured I may as well be off. Only on 20 mg Elavil now. Probably would be hard to get off because it helped me more than a benzo for a couple of weeks when I first started it, just like remeron did. Remeron was terrible to get off. It seems that anything that helps me is very hard to taper off. The remeron and Elavil are both antihistamine type drugs and that is probably why they helped me eat and sleep at first. I feel nauseated all the time and maybe it's partly because of the Elavil. I did taper it down from 25 to 20 last year. Who knows? Maybe it's just me. One of my friends has been struggling with cancer and has just been told there is not much they can for her any more and have given her six months to live. She is still trusting God through it all and is suffering horribly. Because I am an introverted HSP and so anxious, I can't go to see her. I feel guilty. She does have many, many friends who do visit. My husband is in Florida for a few months. I went last year but was stressed and overwhelmed so am staying home alone which is less stressful. Both my adult kids live here and my grandson. I feel stressed even when they come over. I am going for neurofeedback by a neuropsychologist and hoping that will help. He showed me my brain scan and said that my brain is very inflamed and I must be feeling very disconnected and not like myself. My daughter just called from work and asked if I could pick my grandson up from school and take him to their house and stay for supper. I feel nervous but want to do it and will do it. Why is everything so difficult and scary when there is nothing wrong?? Sorry for writing an essay. Just wanted to let you know what's going on in my life. Love to all my buddies on this road together. ❤️❤️ Link to comment Share on other sites More sharing options...
[so...] Posted January 16, 2018 Author Share Posted January 16, 2018 Flicka, You are doing okay, all things considered. I hope your neurologist will help you bring down the brain inflammation without other drugs. Maybe the drugs you are/were on are contributing to the inflammation. We just don’t know what causes what sometimes. I’m happy you are going to spend time with your daughter and grandson. It will all go well, better than the dread makes you feel beforehand. Thanks for sharing your life here with us. It’s good to write about how you feel. It’s also good for the rest of us to know we are never alone in our suffering. I’m sorry about your friend with cancer. Take heart in knowing that cancer is not an automatic death warrant. The prognosis could be wrong and your friend may still have many years left on this earth. We need to decide what we want to do with the time we’ve been given. Sofa Link to comment Share on other sites More sharing options...
[Fl...] Posted January 16, 2018 Share Posted January 16, 2018 The neuropsychologist asked about meds I was on. When I told him I had been on a benzo he said, "oh, no, you don't want to go there. That's a slippery slope." He was happy when I told him I was off the benzo. He can't prescribe drugs. He is not a medical doctor. He has a Ph.D in neuropsychology. He said our brains have neuro plasticity until well into the 80th decade which is where I am right now. Link to comment Share on other sites More sharing options...
[Ni...] Posted January 17, 2018 Share Posted January 17, 2018 Hello Sofa and Everyone, Noticed the new thread and wanted to stop by say hello and give an update. After Almost 2 years of not being able to work I’m happy to report that I’m working part-time which is such a blessing because I honestly never thought I would ever work again. I still have a 3-4 symptoms that haven’t resolved entirely but I’m better than even 6 months ago. I’m 35 months off-cold turkey. Link to comment Share on other sites More sharing options...
[Va...] Posted January 17, 2018 Share Posted January 17, 2018 I am going for neurofeedback by a neuropsychologist and hoping that will help. He showed me my brain scan and said that my brain is very inflamed and I must be feeling very disconnected and not like myself. Hi Flicka, what kind of scan did you have? Wat it a pet scan? Hope the neurofeedback will help! Vanille Link to comment Share on other sites More sharing options...
[No...] Posted January 17, 2018 Share Posted January 17, 2018 For me, I need to remind myself, quite often, that "change" is a constant in my life ... I started taking the drug ... changes occurred ... I continued to take the drug ... changes occurred ... I started withdrawing from the drug ... changes occurred ... I stopped taking the drug ... changes continue to occur ... Also ... either sometime nearing the end of the months I spent in acute or shortly afterward, I came to recognize that how I respond to these changes affects my experience of this healing process ... and ... sometimes may actually affect the process itself ... I believe specifics are impossible because we are each utterly unique and bring unique life circumstances to the table ... so I can only attempt to keep things general ... and tell how I respond to this process ... Be Well ... Link to comment Share on other sites More sharing options...
[No...] Posted January 17, 2018 Share Posted January 17, 2018 With regards to "inflammation" ... for me, inflammation has been an on again off again part of my process ... About three years ago some testing showed that my lymph nodes in my groin and legs were "inflamed" ... and the immediate response from the medical community was that a biopsy was necessary ... and I was very confused and frightened ... and my asking questions only seemed to get the medical folks upset ... The questions I tried to ask were ... Is this inflammation temporary? ... Is this inflammation part of the healing process from benzos? ... What are the consequences of the intervention of a biopsy? ... How will a biopsy affect the peripheral edema in my legs? ... I never did get any satisfactory answers to these questions ... and ... I allowed myself to be all but bullied into getting the biopsy done ... the biopsy was done, nothing found, and subsequently the edema in one leg worsened ... testing a year later showed no inflammation in my lymph nodes ... This is my experience ... it may or may not be helpful ... Link to comment Share on other sites More sharing options...
[so...] Posted January 17, 2018 Author Share Posted January 17, 2018 Niners, It’s so good to see you here! I’m right where you are too. I have the two original symptoms I got when I jumped off the meds 38 months ago. I get little blips and spurts of a few of my auxiliary symptoms now and then. They last for a few seconds or minutes, then stop. We are winding down, my friend. This is all going to peter out and leave. It’s the home stretch. I’m so glad you’ve been able to work again. I haven’t yet, but I will eventually. I thank God for my disability income to carry me through this awful mess. I’m looking forward to the day where I understand and I’m grateful I went through this process. There’s a reason this happened to us. There are no accidents. We are going to put this in our rear view mirror someday. Sofa Link to comment Share on other sites More sharing options...
[so...] Posted January 17, 2018 Author Share Posted January 17, 2018 Nova, All the questions you asked yourself and the medical professionals were strong intuitions that I believe become stronger and take a front seat during this process. I never used to ask my doctors questions about possible consequences of their proposed treatments and medications. I just blindly followed their instructions, assuming they knew what was best for me and how to “fix” me. Not anymore, not ever again. I know what is best for me. This healing process is a dance. A jitterbug at first, now it’s a waltz. I can feel when my body is naturally “fixing” something that needs fixing inside me. I listen and observe. I see the medical profession now as a think tank full of guesses and possibilities, not a clearinghouse of iron-clad answers and solutions. I am now a part of the medical team I employ, not a bystander. I am part of the solution. The biggest part. My observations and opinions are more important than those who are looking inside me from the outside. I’m looking at me from the inside where the issue exists. That makes ME the expert, not the doctors. It’s a big responsibility taking the lead in our own care. Very daunting at times. Trusting myself to know more than the doctors I was taught to trust completely with my health care all my life takes a long time and a huge leap of faith. Sometimes that leap of faith happens when we see mistakes and flaws in the professionals. Mistakes are the biggest teachers. This dance is never done and the music never stops. I will forever keep in tempo with the rhythm of my body and I will listen without being overly vigilant and anxious someday. It’s the rhythm of life. A natural state of being. I’m not along for the ride anymore. I’m driving the car. Your thoughts are always welcome glimpses into the soul, Nova. Sofa Link to comment Share on other sites More sharing options...
[Va...] Posted January 17, 2018 Share Posted January 17, 2018 With regards to "inflammation" ... for me, inflammation has been an on again off again part of my process ... Hi Nova, Did you feel sick at the time you had this inflammation and did this go away when the inflammation left? The muscles in my upper legs, arms and back feel inflamed. They are swollen. I wake up feeling very sick every morning and it seems related to my muscles since I feel the sickness most there. Thanks for sharing your experience! Link to comment Share on other sites More sharing options...
[so...] Posted January 17, 2018 Author Share Posted January 17, 2018 Vanille, I look at periodic inflammation as I do the thousands of viruses and bacterial infections our bodies keep in check every day. There are millions of foreign organisms our bodies prevent from flourishing constantly. It’s a perpetual process that keeps us healthy. Some of these viruses start getting the upper hand sometimes. Inflammation occurs. Our bodies manufacture more antibodies. The battle wages and the body wins. The inflammation subsides. The symptoms that occur from inflammation are as diverse as the thousands of areas that can be effected. When our nerves eventually settle down, this process of the natural ebb and flow of internal healing will be seamless and we won’t “feel” it. Sofa Link to comment Share on other sites More sharing options...
[Fl...] Posted January 17, 2018 Share Posted January 17, 2018 I am going for neurofeedback by a neuropsychologist and hoping that will help. He showed me my brain scan and said that my brain is very inflamed and I must be feeling very disconnected and not like myself. Hi Flicka, what kind of scan did you have? Wat it a pet scan? Hope the neurofeedback will help! Vanille The test is called a QEEG, I believe. Link to comment Share on other sites More sharing options...
[No...] Posted January 17, 2018 Share Posted January 17, 2018 Vanille ... not exactly sure what you mean by "sick" ... my general feeling of "sick" might be best described as "benzo flu" ... I cannot say if I associate this feeling of sick with episodes of inflammation ... I just don't know ... likely they are connected but I can't say they are ... I have used an arnica cream when things have gotten very tight and sometimes painful without any noticeable side effects ... Also, if you can, and it is understandable if you can't ... some very gentle stretching or self-massage may be helpful ... again, very gentle ... I would not recommend a massage by another person unless they are very skilled at taking directions and are not trying to fix anything ... I have not found a massage person who is willing to take directions from me so I do not go that route ... I have much experience with tai chi and qigong so I go the gentle stretching route ... I know what I am looking for and can self-massage quite well unless I find that the process is generating side effects in the moment ... and then I just stop ... Sorry I can't be more helpful ... Link to comment Share on other sites More sharing options...
[Va...] Posted January 17, 2018 Share Posted January 17, 2018 Thanks Sofa and Nova. Long before wd I wasnt able to get massages cause it made me feel very sick and poisoned. It was like my muscles were full of toxic waste. For me it feels my muscles have started to clean this mess up spontaniously during wd and this might go with cell renewal and inflammation from this process. I think thats why I feel poisoned every morning cause the poisoned feeling comes from there. After drinking a lot of water the feeling goes away and my muscles calm down till bedtime. My chiro also thinks there is inflammation in my muscles as she can feel they are swollen. We can all experience a process thats a bit different and it doesnt really matter to agree what is going on. Who knows? Was just searching for a bit of reassurance. The tiredness is so relentless and overwhelming, cant believe it will ever go away. My mentals do get better though. Guess part of the tiredness in my head comes from repairing the damage related to that. Nova, some might call the poisoned feeling 'benzo flu' but for me it feels so chemical I cant call it flu. Link to comment Share on other sites More sharing options...
[No...] Posted January 17, 2018 Share Posted January 17, 2018 Thank you Vanille ... I know what you mean by that "poisoned" feeling ... and it is a very lousy and exhausting feeling ... BTW ... this may be what some folks describe a feeling "toxic" ... Link to comment Share on other sites More sharing options...
[ne...] Posted January 18, 2018 Share Posted January 18, 2018 Hi Nova and NIners. It`s nice to see you here ...but it`s not and you`ll know what i mean! Today my neck and lower back are hurting like hell! 33 months and my muscles are still complaining! I`m told muscle pain is normal during the healing of this crap but come on receptors!! Vanille...urgh! i know what you mean by the poisoned feeling too. Hope that one goes for you soon. Link to comment Share on other sites More sharing options...
[No...] Posted January 18, 2018 Share Posted January 18, 2018 NCT ... I have often considered a neck-ectomy when I get a dose a vice-neck ... then I realized that may leave me too detached ... Hmmm ... seems I can't insert any smiley faces thingies ... guess something is turned off somewhere ... Link to comment Share on other sites More sharing options...
[ne...] Posted January 18, 2018 Share Posted January 18, 2018 Nova....book me in for the neck-ectomy! Perhaps we`ll get a discount, a two for one deal? Lol.....I`m already detached!! Link to comment Share on other sites More sharing options...
[so...] Posted January 18, 2018 Author Share Posted January 18, 2018 How do I get the 4am cortisol-ECTOMY? Why doesn’t this at least stop just one morning? CRAP! Sofa Link to comment Share on other sites More sharing options...
[ne...] Posted January 18, 2018 Share Posted January 18, 2018 I,ll have one of those as well , Sofa! In fact book me in for every ECTOMY .... may as well get it all done in one swift swoop! Link to comment Share on other sites More sharing options...
[Va...] Posted January 18, 2018 Share Posted January 18, 2018 I,ll have one of those as well , Sofa! In fact book me in for every ECTOMY .... may as well get it all done in one swift swoop! Its unfair that we feel disconnected to our bodies but still experience EVERYTHING thats going on in that weird thing we hide in! The dp is lessening for me, getting a bit of my identity/personality back. But still feel not connected to my body. Link to comment Share on other sites More sharing options...
[so...] Posted January 18, 2018 Author Share Posted January 18, 2018 Vanille, I’ve talked to many people who got hit with the DP/DR symptom. The good news is that it wasn’t the last symptom to hang on until the end for any of them. It lifts earlier. And it left for all of them completely. It’s a very disturbing symptom. I had it pop in on several occasions the first 2 years and it’s a really tough one to deal with. All the symptoms are disturbing, but this one was one of the worst for me. Sofa Link to comment Share on other sites More sharing options...
[Va...] Posted January 18, 2018 Share Posted January 18, 2018 Hi Sofa, You had it pop in? Ive had it from day one till now. No windows in this symptom, just gradually diminishing in severity since the last half year. Dp for me is not just one thing. Most people only call it dp when they dont relate to their reflection in the mirror. I still feel not really connected to my image. But it is also loss of identity, not feeling a person, not having a feeling of 'me'. Living in 'robot' state. Doing things on auto pilot with no related feelings. Not feeling connected to other people. Not being able to have the proper feelings. And besides that the dr with not feeling connected to my own house, stuff, things I wrote a few hours back. Feeling like watching a tv show instead of living. Didnt you have this all all the time? I think Ive had a bit of dp and dr since I started on antidepressants for the second time and had it for twenty years on the meds. Since I withdrawal from both, I guess my dp/dr is this bad. Im sure it will leave, maybe even soon, it gets better every two weeks now. Link to comment Share on other sites More sharing options...
[so...] Posted January 18, 2018 Author Share Posted January 18, 2018 Vanille, It’s a really good sign that you see it getting better weekly now. It’s losing its grip. My 4am cortisol alarm has never abated one bit since the morning after I jumped off the meds. I still have faith that it will resolve one day, even though its consistency makes my faith waver each morning when I’m dealing with the onslaught. This is my one BUGGER symptom that’s got quite a stronghold in me. Yours is DP/DR. Neither symptom is worse or “stickier” than the other. They are all awful. Mine just happens to be hitting me differently than yours is hitting you. We will both get through this. Sofa Link to comment Share on other sites More sharing options...
[Fl...] Posted January 25, 2018 Share Posted January 25, 2018 Very quiet here. Hope that's a good thing. I just don't have anything positive to post. Link to comment Share on other sites More sharing options...
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