Hey friends, it’s been a while since I’ve touched base not because I’ve been well but because of so many drugs and deep depression. I’ve been angry, sad, mad, scared and difficult to be around. My husband does his best to be patent with me and my daughter who is 10 has had a difficult time with mommy being sick. Recently my husband called mental health on me to get a councelor ot to see me. It helped me but interestingly enough the councelor spent more time speaking to my family abou my illness and how to Cope.
My episodes, sezure like episodes are back with a vengance happening every day sometimes multiple times a day. The 4000mg of nuerontin and 8mg cogentin with 40mg Celexa have not been enough. My nuero added car carbidopa 25mg and levadopa 100mg. The side affects of all of these meds is DEPRESSION AND TREMORS! It’s so confusing!
My genetic tests are still not back and it’s been over 6 months. Should be back in the next week or so. Once we have that we can fine toon treatment. I’ve been needing a wheelchair to do anything that requires physical movement beyond 10 minuets. I use the walker r cane in the house and that is it.
Does anyone have an Ataxian dark passenger? 396-image.jpg (929 KB)
Hi Lavender - I’m sorry to hear of your predicament. I’m unsure if you’re able to do yoga excercises, but 5 poses in particular are good for relieving depression. 2 of these are cobra and bridging - both of which are good for other ataxia-things as well.
Thanks Judely, I’d love to try yoga. I’m still waiting for my nuero to release me to physical therapy. It seems ever time I try to do something as simple as taking a shower and getting dressed are all I can do in one day. I’m held back physically to smal exertion because if I do too much it triggers an episode. I just don’t know what to do.
Great advice, I have found sleep to be one thing that helps too. Now if I could just keep consistent things may also stay constant. It’s different everyday, one small thing just really gets to me lately.
John “JC” Colyer said:
I have been diagnosed with clinical depression due to Ataxia, I take medication it helps me not all. I find keeping a routine and sticking to it helps me, a consistant sleep schedule helps also. Keep trying and stay strong!
I had a long period with seizure like symptoms. The difference is that I did not wind up on any seizure or depression medications. I wanted medication but Dr said not to at the time - my situation was different since I have brain damage related to stroke and things were very slowly improving and I was not considered medically stable at the time.
I got a lot of help from a social worker trained as a therapist for people with life changing health conditions.
By far the most useful thing she had me do was sessions that were a mix of group therapy/ mindful meditation/ relaxation techniques that was held at the hospital.
It was unbelievably helpful to me and the other people in the group. We had tapes to practice with at home. It helped a lot. Helped with the depression, helped having a tool I could use when family issues increased tension.
At least it is something you can choose to do even when your body is not cooperating.
You could ask your counselor what might be available for you. A key name in the field is Dr Jon Kabot Zinn-- kind of the father of the field of mediation as part of medical pain management clinics.
Here is a good one that is online. Try listening to it every day for a couple of weeks and see how you feel about it then. It is free and can't hurt.
Body Scan - a guided mindfulness meditation with Florence Meleo-Meyer of the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical Center.
The guided meditation lasts about 40 min, and there is an additional 20 min of silence / nature for those who wish to continue their practice beyond the guided portion.
This meditation is distributed as part of The Mindfulness Based Stress Reduction Program at UMass
More seriously though I do have something of a “dark passenger” due to my ataxia. Ever since l have been diagnosed I have been out of control. Raging alcoholic by the time I was 16 and fell into a deep depression. All that were close to me felt helpless and have lost many a friend due to my behavior.
Now at 22, i find myself in the same depressed rut, with the same alcohol/drug/smoking issues but with more control. I can’t help it, its just who I am, its how I deal with my ataxia. It’s one thing that I can control in all of this.
When I had depression I just took things very easy.You cannot do things with an injured brain.You just get through each day .You will be able to make decisions and do more when you are well and that means giving your brain a good rest.
I had to let other people carry me but allthough it seemed endless there is an end.Lots of people don't understand depression and it can become a moral issue but it can be an illness.Treat yourself as an ill person getting better and don't feel guilty.
I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause) 10 years ago. I've been on an anti-depressant about 17 years now, due to a heart arrythmia I was born with. It started giving me more trouble after I had my second and last child. My doctor at the time put me on Inderal, a beta -blocker to control my arrythmia, which had a side effect of depression. I became clinically depressed, had heart surgery to fix my arrythmia, was feeling better and found out my husband had terminal cancer. Therefore, I stayed on the anti-depressant, and raised our children while working full-time (our children were 12 and 14 years when he died). Then 10 years ago I found out I had ataxia. I went thru many stages of grief, so I can relate. I remarried 7 years ago and also retired from my job as a social worker. My children are grown now and my son has two children of his own, so I'm a grandma. I'm glad I'm on the anti-depressant, as ataxia is so frustrating and challenging. I think many people with ataxia suffer from depression. The anti-depressant is not a "happy pill", it just helps me cope better. I still feel sad at times, although this feeling passes quickly and I know why, as with depression you feel sad, and don't know why. Sorry to go on and on. My best to you Lavender, as you are dealing with so much! Hopefully, once your genetic tests come back, your medication will be adjusted and you'll feel better! ;o)
Hi,
Depression catches unaware and disturbs terribly and I do get caught in it and try to come out of it as quickly as I can. I do feel sad once in a while but I wage a war constantly to release myself! Diverting my attention helps a lot and I only resort to this to avoid anti depressant tablets at the moment.
An amazing journey with so many challenges, no wonder you sank inside! How in the world can one family endure all that you have suffered? Thank you for sharing it makes me look at my situation with a different perspective, uncovering small doses of reasons to be happy. Thank you for that! I understand the heart surgery, my husband was born with a bad valve and just 16 months ago had open heart surgery to replace his aortic valve. At 50 years old we nearly lost him twice while in the hospital. After three weeks in hospital we were told he would never fully recover because his ventricles were too damaged. They gave him a pacemaker twice before they found one that worked to not only pace him but to also synchronize his heart. Adding to this my 10 year old was diagnosed with chrones disease on her 5th birthday. She is doing well, but has her bouts. Now I’m going on and on!
My point is…I understand how our own personal problems seem to naturally be set aside when a loved one is ill. I’m feeling not less depressed about my health and today am able to embrace my blessings! This disease is like a roller coaster…one day the sky is blue and the next is miserably grey and hopeless. With the ups and downs we Ataxians live with the true solace is this group of sisters and brothers who share their darkest moments in hopes of holding the hand of another who truly understands. Thank you all for sharing what is difficult to admit, Ataxia depression.
Thanks for being transparent with us Lavender! It's hard to even tell people when I'm dealing with depression. I've got to say the one sure thing that helps me, helping other people. You can still do that here. There are many of us here who are lonely and isolated. I've got several new friends who I chat with on a regular basis.
The real miracle with this approach is, it works!! Helping others is like a miracle pill. You have so much to offer to others! You look like you have a good sense of humor too.
I have also found one of my meds causes depression. Just knowing that, helps me to ignore the "ugly" voices in my head.
You are loved. Your daughter NEEDS to have you there for her. Find something you can do with her every day. If nothing else, just listen to her every day. She's treasure the time you give her. I wish my mom would have done this with me.
Hi Again Lavender - focused breathing, meditation, or visualization might be some good options for you…there are probably others; those are a few that are non-physical-exercise-related that I can think of right off hand. You want to run these by your doctor, first, either way, though.
You sound as though you have dealt with so much Lavender! And to have ataxia on top of everything else can cause depression. But you are so right, it's always good to count your blessings. One of my favorite sayings is (I've put it on this site before, so those of you who've read it before, I'm sorry...,ha!), " a woman is like a tea bag, she never knows how strong she can be until she gets into hot water"! Try to be as positive as possible. Although we don't have control over having ataxia, we do have control over our attitude! Try to focus on what you CAN DO, rather than what you CAN"T. You can always "vent" on this site. Although we have different types and degrees of ataxia, we do share many common symptoms. Therefore, we understand and can be supportive of each other! You're not alone in your journey! My best to you ;o)
Thank you for opening my eyes to the reality of our disease. This group is full of warmth and light that each of ue needs. There are days we need to receive and days we give, it’s a balance of strength and understanding that only those of us who share ourselves can grow from.
Julie Hahn said:
Thanks for being transparent with us Lavender! It’s hard to even tell people when I’m dealing with depression. I’ve got to say the one sure thing that helps me, helping other people. You can still do that here. There are many of us here who are lonely and isolated. I’ve got several new friends who I chat with on a regular basis.
The real miracle with this approach is, it works!! Helping others is like a miracle pill. You have so much to offer to others! You look like you have a good sense of humor too.
I have also found one of my meds causes depression. Just knowing that, helps me to ignore the “ugly” voices in my head.
You are loved. Your daughter NEEDS to have you there for her. Find something you can do with her every day. If nothing else, just listen to her every day. She’s treasure the time you give her. I wish my mom would have done this with me.
I feel your pain. I had deep depression when my symptoms began to disable me. My doctor had to change my anti-depression meds many times as we couldn't find a combo that worked. We found a good combo just two months ago. I'm on Prestiq and a small amout of Celxia. She made me promise the minute I fall into that dark hole, I call her and we'll add more of one or another and find the right med so I can get out of bed and be with my family. I still have depression creep up on me some days, but who wouldn't when you are disabled? I try to keep my mind busy with the web, books, computer games and occasionally simple crafts (until my hands hurt). But I really think the depression has been the hardest thing to deal with. It is the one thing I have to work with, work around, and make my mind work hard against.
You are on many different depression meds, but as my doctor said over the many, many months we changed mine to find the right one(s) for me, each med works differently on everyone, we have to keep changing meds and adding meds until we find the right cocktaill for my body. Hang in there. I am also the caretaker of my 13 year old who has T1D. She goes through periods of hating her port, iv line and pump. She cries, want's a life free and easy like her friends. She is not on anti depressants, and I hope she never has to be. She stenciled in capital letters on her wall, "This too shall pass," and I often step in her room just to read that to remind myself if my child can be strong with her chronic condition which takes so much time to care for, than I can too.
Make sure your doctor knows your anti-depressant cocktail isn't the right mixture, yet. Something will work for you - keep trying. My life got much better after my doc found the right mixture of meds for my depression.
Many people have rough times, but it makes you stronger, more empathetic and compassionate, if you allow it to. I told a bit of my story so Lavender would realize that depression is quite common in people with disabilities, no matter how it "starts". I wanted her to know she is not alone, as this site is a wonderful support system with people who understand, as we're all dealing with ataxia. Thanks Marie! ;o)
Thank you Robyn, I will check with Dr. Perlman, UCLA about my cocktail. I am taking the maximum amount of Celexa 40mg. And I think we need to find some additional anti depressant drugs. My best to your daughters health, she is in good hands with you I’m sure. Blessings and hugs.
Robin Yule said:
Hi Lavender,
I feel your pain. I had deep depression when my symptoms began to disable me. My doctor had to change my anti-depression meds many times as we couldn’t find a combo that worked. We found a good combo just two months ago. I’m on Prestiq and a small amout of Celxia. She made me promise the minute I fall into that dark hole, I call her and we’ll add more of one or another and find the right med so I can get out of bed and be with my family. I still have depression creep up on me some days, but who wouldn’t when you are disabled? I try to keep my mind busy with the web, books, computer games and occasionally simple crafts (until my hands hurt). But I really think the depression has been the hardest thing to deal with. It is the one thing I have to work with, work around, and make my mind work hard against.
You are on many different depression meds, but as my doctor said over the many, many months we changed mine to find the right one(s) for me, each med works differently on everyone, we have to keep changing meds and adding meds until we find the right cocktaill for my body. Hang in there. I am also the caretaker of my 13 year old who has T1D. She goes through periods of hating her port, iv line and pump. She cries, want’s a life free and easy like her friends. She is not on anti depressants, and I hope she never has to be. She stenciled in capital letters on her wall, “This too shall pass,” and I often step in her room just to read that to remind myself if my child can be strong with her chronic condition which takes so much time to care for, than I can too.
Make sure your doctor knows your anti-depressant cocktail isn’t the right mixture, yet. Something will work for you - keep trying. My life got much better after my doc found the right mixture of meds for my depression.
