Help me, I feel like I'm unraveling! I have an unknown ataxia, mostly vestibular. I get a lot of vertigo & nystagmus/oscillopsia. Since 2010 I've lost the ability to keep my job, to drive anywhere other than our very small town - and then only on good days, and the ability to multi-task or commit to social functions unless I know how I will be doing that day and if I can handle it. Through it all I have kept a very positive attitude. I have been happy despite my world shrinking as I am able to stay home and be with my youngest daughter who is 11. I love being a mom.
Then this year starts and I have started some new meds that have made a huge difference. I was given a possible diagnosis of Ea2, and have been being treated with Diamox which has made everything even better!! I researched studies available hoping to be able to get on a clinical study to help others. On Friday though I received a phone call from a neurologist who is the director of these clinical studies. She told me that I do not have a diagnosis after all, not without genetic testing. She also told me in her opinion it was unlikely due to my age (39), and the fact that I know of no other people in my family with these symptoms. She was very nice, and told me she was very sorry to tell me these facts. She was willing to look at my history and get back to me on any recommendations as to what she thought I could do.
I know it doesn't sound that bad... but it took all of the wind out of my sails. Up until this diagnosis I had just been an at-home mom with health problems that people often roll their eyes at assuming I exaggerate (although not my family). The diagnosis finally gave me a label. Something I could explain, and stand behind. Like when people have cancer or MS or Parkinsons. People immediately go "oh, I know what that is". People diagnosed with these diseases have a cause or purpose to stand up or fight for awareness, etc. They can get others involved in their victories or failures. They have support groups.
Now, I have no diagnosis AGAIN. At least not until genetic testing which I can't afford. I have no support groups other than on-line as I know of nobody with my symptoms. When people ask I struggle to explain what is wrong as I don't know the cause or the prognosis, and my symptoms can change from day to day. I have been falling apart now. Like I've lost my identity, and my husband doesn't know how to relate. He tries, but he is frustrated he can't help me.... and I'm just so tired. Tired of doctors guessing and telling me I'm unique or rare. I'm tired of trying to explain myself, and tired of seeing people wonder or have puzzled expressions. I can't always tell people I suddenly don't feel well so often I don't. I just push through... and then they expect me to be fine all of the time but I'm not. Because of this phone call on Friday I even ended up sending myself into a migraine and vertigo for two days. Thankfully not as bad now because of the new meds, but I know I need to snap out of it before I spiral even further.
I believe each of us feels lost when we stop to think about life ,with all the unKnowns and the helplessness of trying to manage each day. Every day we are told "Be still and know I am God" . Here you are not alone. It is a struggle we all share. We are disappointed and there are days when we are discouraged. I PRAY that you and each of us are have more days of peace.
I don't know if Gervais is close to you, but the Willamette Valley ASG is an active ataxia support group and they may be able to connect you with other ataxians in Oregon. Contact me and I will send you information to contact them.
I too have vestibular ataxia after a brain hemmorhage and hydrocephalus.
It’s tough going, especially when everyone keeps telling me how good I look!
It is very socially isolating. How do you tell someone " you can visit me, but don’t move your hands when you’re talking or rock or sway, or stand up so that I have to look up at you"!?
I’ve just been focusing on the here and now, today I can do this, and tomorrow I will aim to do …
I live in constant hope that I can regain more independence and without that hope, I would be lost.
I too have an 11 year old youngest daughter, her and her brother give me purpose and focus in this.
In short, my simplistic view is today may be bad and that’s ok. Tomorrow will be what it will be and that’s ok, but I will rejoice in each thing that I can do and keep focussing forward. If I need to have a rest from all of this and have a cry and get frustrated, that’s ok too, it’s all steps in the journey.
Take care.xx
I can’t afford genetic testing either but symptoms, tests and other things can be used to diagnose. I use to call my illness “IT.” Now it is SCA. Hard to explain so I just tell people it is sort of like MS. Affects muscles, nerves n lots other stuff. That’s how I explain “IT.” And they seem to be cool with “IT”. I feel like you also so know u r not alone.
PG I like the "IT" diagnose, I always compare it to MS which most people have heard of. I am grateful each and every day I am above ground and am learning to accept "IT". Peace and love to everyone.
I can understand the unraveling feeling you feel. My symptoms change on a daily basis, meaning what I can deal with today is totally different to what I deal with tomorrow. Everyone says I need genetic testing to determine what kind of sca I have. But that is an unrealistic reality, so I deal with the tremors, migraines, dizziness, falls etc. as they come. I do not have the family support that I would like, so I have learned to handle situations by myself. Accept help when I am offered and deal with my pity moments as best as I can. Be positive, for every trial will make you stronger internally. Take care.
Sorry I wrote a book and it didn’t post I will get back to you. I am an at home mom with a17year old and a 12year old I say I have a nurological disorder called ataxia and I refer them to look it up on line . I have a service dog to help others slow down and this way they can see that I’m not drunk , people do a lot better with visuals , I get my ivig for 5 hrs every 2 weeks and I am better until the week wears on,
Thank you so much for all of your replies. It is hard when you hit a low moment and nobody seems to understand what you’re going through. It’s nice to hear that you all do, and that alone makes me feel better… like I’m not all by myself. Like u said, I’m a very positive person. I’m very faithful in my beliefs to God. Those don’t waver, but my frail human nature and body does. I’m still down, but thanks for helping me take a baby step to work my way back up.
I totally relate to everything you just said! I used to have to ask my kids not to run or bounce near me, and not to bump my chair. I can’t stand if someone hovers behind me our moves too much when they talk. Amazing how these little things are taken for granted when you don’t have vestibular problems.
Eliza said:
I too have vestibular ataxia after a brain hemmorhage and hydrocephalus. It’s tough going, especially when everyone keeps telling me how good I look!
It is very socially isolating. How do you tell someone " you can visit me, but don’t move your hands when you’re talking or rock or sway, or stand up so that I have to look up at you"!?
I’ve just been focusing on the here and now, today I can do this, and tomorrow I will aim to do …
I live in constant hope that I can regain more independence and without that hope, I would be lost.
I too have an 11 year old youngest daughter, her and her brother give me purpose and focus in this.
In short, my simplistic view is today may be bad and that’s ok. Tomorrow will be what it will be and that’s ok, but I will rejoice in each thing that I can do and keep focussing forward. If I need to have a rest from all of this and have a cry and get frustrated, that’s ok too, it’s all steps in the journey.
Gervais? Never heard of it but I grew up in the Willamette valley. We are about 2 1/2 hours away. My doctor’s nurse is trying to see if she can help start a support group here. I will get back to you if not because I’d love to have a support group. I would like to see people face to face. I will be in touch tho. Thank you for the offer.
Michael said:
I don’t know if Gervais is close to you, but the Willamette Valley ASG is an active ataxia support group and they may be able to connect you with other ataxians in Oregon. Contact me and I will send you information to contact them.
Boy do I relate to your story. I too can not afford genetic testing. Truth is in the final knowing if it is due to a type of heredity knowing that fact will change very little. Most people automatically believe that doctors can solve every thing.
I have learned over time to do what makes me feel safer and comfortable.
Hang in there. I see this as just another one of life's adventures presented to one. Yes day-to-day ones life appears smaller, and in some ways it is just different. Perhaps the learning experience of accomplishment of managing what one needs daily is can help one feel better.
If you have no diagnosis and these symptoms avoid the rip off genetic tests as they are nowhere near being sophisticated enough. Ask for a test to detect GAD anti bodies. Then rituximab and or viagam if that doesn’t work ask for plasma exchange therapy. Good luck.
Sorry to hear you are having such a tough time. For years I spent thousands of dollars seeing doctors trying to get a certain diagnosis. Don’t have one but pretty sure the original diagnosis of SCA is correct. I have vertigo as you do but can still drive. Had genetic testing with no success. Over time I let go of the idea that I needed a diagnosis. It’s Ataxia and doctors don’t know much about any of the forms of this. You are lucky to find meds that help. Most people don’t. I don’t take anything but thyroid medication and am improving. Of course this isn’t suppose to happen. I tell people I have something similar to MS and that seems to be enough. If you ever get close to Portland I’d love to connect and chat. Also dr Hills at OHSU is someone you should see if you can. He’s brilliant when it comes to vertigo and Ataxia. No cure but he has given me more clear answers than any of the many many doctors I’ve seen. He’s a neuro-Opthamalogist. OHSU has a financial assistance program if insurance is an issue. He’s the only one there I can recommend.
I am feeling bad for you at this time. I to have heretitary cerebella ataxia and nystagmus. Unbelieveable that people would think a person would be putting on an act with the symtoms we have. Who or why would someone think this is an act??
i live this every day for the past 4 and one half yrs. I can assure them it is not something to be acted out. We have it and must deal with it the best we can. I am now to the point I must use a scooter it I have to walk a distance. Darkness is now my enemy and I can walk as long as someone holds my arm or I use my 4 wheel walker with a seat to it.
At this time I do have a quwstion for you. What meds have helped you and what have they done for you to make it easier?
How long have you been using them? If possible I would love to know this. I to cannot afford genetic testing but have to tell you this. My family and I never had heard of Ataxia until I started symptoms back in 2010. As time went on my younger sister started talking about how hard it was for her to walk in the dark. With my suggestion to seek an exam it was decided that she had ataxia. She did not let doctors know of my ataxia until they diagnosed her. Then she told them about me. She is close behind me for symptoms but still tries to keep from using her wheel walker. Denille!
Would love to know how far has your regressed and how you are feeling on this subject if possible. Thanks for sharing your story.
I am on gabapentin. It helps some with the nystagmus and migraines. It also helped with neuropathy that I had on my right side. I just started gabapentin and Klonopin (clonazepam) in December. I take a small dose every evening of that to help prevent vertigo attacks. I just started taking Diamox (acetazolomide) at the beginning of july. It has helped enormously to keep away attacks, migraines, and my nystagmus is better too. It has some hard sideffects though so I'm still struggle with those.
I have had times like last year where I was really bad. Last year I had days that I hardly had enough energy tto do much else other than sit in my chair. I also had a hard time with migraines which would facilitate vertigo spells, oscillopsia, and balance would get worse. After the gabapentin and Klonopin I was able to finally start exercising again. I finally could do regular exercise which I think has helped as much as the medication. As for the rest, the new meds have been the icing on the cake. I finally feel normal on my good days. I still have the occasional bad days but it doesn't progress into a bad spell like it used to. I still have to use walking sticks when hiking or walking on uneven ground. I still have days that I get very tired, but right now I'm the best I have been for years. I owe it all to the meds. I used to struggle with taking meds as I'm very sensitive to most, and a lot of them don't work well for me. But, these ones have been worth the fight. Hope you find something that brings you some relief. And truly, exercising on on a regular basis helps as much as anyy med. Even when you have to push and struggle through it.
Hi miss cake
We’ve been out of contact for awhile. I am sorry about your recent diagnosis. Feeling frustrated and alone is natural when there are so many roadblocks you have run into. It sounded like you have made progress in several areas. Being able to hike is fabulous. Is it the lack of diagnosis and worry about the future symptoms that frustrates you? I understand the disappointment you are feeling after the last false diagnosis. Even though we may not share all your symptoms, we are here to listen.