Nystagmus Treatment Fail & Tomorrow is My Birthday

Wow I have just been
so depressed
lately, I feel horrible, I can’t see straight and other
symptoms of mine are getting worse. So I have mentioned before that I have a
huge lesion in my cerebellum, which explains my balance issues and my
oscillopsia/Nystagmus (and a few other things but those are what are making
life feel like hell). For a while my balance sucked but I could still do that
neurological test (forget the name) where you put your feet together, close
your eyes and extend your arms out in front of you. If you start tipping you
have a vestibular issue. The other day I noticed I could no longer do this. I
would do the test and feel like I was upright but then the pressure of the
floor would grow stronger at the side of my foot. I opened my eyes and hey, I
am falling into the wall!
By the way, balance
works thanks to 3 functions; vestibular (inner ear), proprioception (the
feeling of where your limbs are in space and the pressure of objects on them to
be overly simplistic) and visual (does the world look like it is oriented right
or is it side ways?).
So this told me my vestibular system is working less well
which tells me the lesion in my cerebellum is getting worse not better. The
feeling in the side of my boot that hinted to my tipping to the side would be
proprioceptive and then when I opened my eyes and saw that the world was not
upright I knew I was falling. So you could say that 2/3 functions are working
ok to keep me upright but really my vision is not so great so it is more like
1.5/3. That is totally not
scientifically accurate but you get the idea. I am going to try to see a
physical therapist my Mom worked with who specializes in vestibular function
because I am not sure what to do. You see I don’t know if vestibular exercises
will actually work much because my inner ears are fine, it’s actually the part
of my brain that interprets the signals from my ears. So hopefully I can figure
out what I can do soon. All I know is the worst thing I can do is NOTHING.
I saw my Neurologist the other day (6/2/15) and we talked
about a lot. I told him that I am just beyond sick of this
Nystagmus/Oscillopsia crap because it is the most debilitating symptom I have.
It is miserable! I just want to see straight again! Driving would be nice so I
could go to the gym and physical therapy AND get out of the house but if I
could just get around and do simple things like cook that would make me pretty happy! I am loosing my mind! So I
had been doing research on treating Nystagmus and I came across a page on
Nystagmus and Saccadic Oscillations created by the University of IowaDepartment of Ophthalmology and Visual Sciences that listed a decent amount of
treatments that could possibly help different forms of Nystagmus.
I didn’t think most of this would do anything in my case but I am desperate and
figure I can’t say “I have tried everything” until I really have. I went down the list and looked up any kind of
abstract related to the treatments I could. First was Clonazepam which I am
already on for Myoclonus; I followed the protocol used in the abstract and…
nothing. I asked my Neurologist for Baclofen since that was on the list. He
wrote me a scrip, I have been on it for 3 days (10mg 3X a day) and… nothing.
Next I will ask for Gabapentin which upon doing more research a lot of people say helps a lot where
Baclofen didn’t. In the mean time I tried another substance on the list which I
really could not believe; alcohol. As in, alcoholic
! I read through Nystagmus forums and almost everyone with both
acquired and congenital Nystagmus said just one glass of wine or a beer seems
to relax their brain an greatly improve their Nystagmus! I was extremely
skeptical but again, I can’t say I tried everything until I have tried
everything! So I picked up some wine; 1 glass, nothing. 2 glasses, nothing. So
I drank about half the bottle and… nothing. Cross that off the list.
They also listed THC, something I plan on trying while I am
in Colorado next month to see what it does (if anything) for my MS because I am
desperate (obviously). I just want some relief! I did forget to ask about trying
another round of Acthar if it is not too soon. Maybe the first round didn’t
clear up my symptoms because it was too busy calming the disease activity down?
I have no idea but the longer this lesion is there the more likely I think it
will/has become a permanent symptom and I really
do not want this to be my new baseline… It’s been hard to get up in the morning
because I honestly have little to look forward to besides making it to the end
of the day so I can go back to sleep where I am usually “normal” in my dreams. I
that is depression talking but it’s how I have felt. I am really
trying hard  to snap out of it… But
depression is difficult; when the alcohol was not helping it was really easy to
pour “one more glass” and I may have taken some medication at the same time so
I was kind of messed up.
Alcohol doesn’t seem to really hit me alone. I give the
example of gunpowder. Gunpowder is made of 3 things; charcoal, sulfur and
potassium nitrate. Put a lit match to these 3 things alone and nothing happens. Mix them together and you get an
explosion when you put a match to it. Alcohol alone doesn’t seem to affect me.
The other 2 medications alone don’t really do anything. Mix them together? Well
let’s just say I have never really felt like that before. I am not mentioning
the meds I took because obviously I do not condone such a thing. People tend to
do stupid things when they are depressed and that was really stupid of me. I
never really drink as it is but yesterday,
I think I just wanted to feel like something I did would actually affect me
because right now it seems like no matter what I try nothing seems to happen. Funny
though, it is a lot easier to make something negative happen than something
positive… Well, always something to learn and now I know. Play with fireworks
and you can blow a hand off. Now I pretty much have a short list of medications
to try alongside hope.
On a more positive note, tomorrow is my birthday; I’ll be
25. Actually I personally don’t consider it a positive note. I am 25, big deal,
look up “Patton Oswald Birthdays” on Youtube and that is pretty close to my
birthday sentiment. I would just post the video here but there is a lot of bad
language, so consider yourself warned. As Dr. House said though, “I don’t
really see the point in celebrating the fact that I was alive long enough for
the earth to circle the sun one more time” or something like that, I forget. I
am sure it would be different if I had lots of friends to hang out with or a
girlfriend but yeah. As of now, I really do not care, it is just another day to
me. Once you hit a certain age there is not much to celebrate in my opinion.
13, 16, 18, 21. Those seem to be the big ones and then it’s 30, 40, 50, 60, etc
and no one ever seems to be overjoyed with those days. I seem to have developed
a really pessimistic sentiment about birthdays and I am avoiding saying a lot
of what I am thinking so maybe I should just stop haha?

Thanks for reading, wish me luck on getting out of this
depression funk I have been stuck in!

8 thoughts on “Nystagmus Treatment Fail & Tomorrow is My Birthday

  • June 6, 2015 at 3:28 pm

    Hang in there Matt. I know it's hard to handle this disease and sometimes it feels down right impossible!! It's nice to hear your honesty on how you feel. It makes me feel not so alone!. Have had MS since I was 20 and it has now been 26 years with this horrible disease. A lot of your symptoms and treatments mirror mine over the years. I am now pretty much stuck in the house and despite my home gym and physical therapy I still need crutches to get around the house. Over the years I have researched and researched and bring anything to my neurologist. Thankfully he is very open. Hang in there. sometimes I think omg how many more years do I have to deal with this torture?? Keep on writing!! I enjoy reading your posts as do many others!!

  • June 6, 2015 at 8:07 pm

    It's a disease with great variation from one person to another. There's a person in my town that is now in her 80,s .She had times she could not walk and times she could not see .We saw her in Shop rite the other week and she could walk and see.I talked to her about the situation one time and she told me that under stress she can't even find words to speak.Why do some recover ?In her case,I just don't know.But ,I do know this the drug companies are working day and night on this.Some of the best and brightest
    people are making drugs to repair nerve damage and change disease coarse.If ever there was a time to be positive it's now.I have personally seen people get better and stay better.Are they perfect .No,Are they improved greatly .Yes.There's a young girl where I go who(17yrs old)was terrible .Now it's been 7 years since then and She is improved somewhat. Her eyes stopped shaking and she still walks with aid.Will everyone do good ?We don't know .Is it possible to be sick for sometime and get better?I have personally seen it.So everyone ,I'll say to you ,what my doctor said to me ,keep trying,keep researching.The medical community is getting some where,and so are you.

    • June 8, 2015 at 4:09 pm

      Thank you. I try to stay hopeful of the future but I am just so tired of fight E V E R Y day. UGH. Will things change? Time will tell.

  • June 7, 2015 at 8:42 am

    Happy late birthday matt. Im starting to not like birthdays either heh…but regardless i'm glad we make it another year. Despite the miseries and hardships of life, i take it over the alternative. Cause at leaast then theres hope of happy moments at some point 🙂 My birthday will be soon, june 15, i'll be 27. I had a dream few days ago involving my MS. i was slightly older, walking around with a tube or something, and i seemed a bit…i dunno how to describe it..gruff? surly?yet still good at heart and strong willed, i didnt take crap from anyone haha. I dunno… if i can use this to grow stronger as a person i probably wouldnt mind that dream coming true 🙂 Did i make any sense?…god lately my mind feels as if im not making much since when i type or talk.


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