He also wants to double the neurontin to 1800mg a day - I hav'nt done it as I am reluctant to add more side effects into the mix.
Life has been pretty tough over the last couple of months - I have struggled to keep going and even spent a couple of days in bed - which is very unusual for me - I like to always get up and move no matter how bad things are so I can keep my mental health and not cramp my muscles, but people misunderstand that - they think that if I'm out of bed, then I can't be all that bad.
Sorry, I'm ranting a bit - guess I haven't had a chance to in a while.
Anyway, I just wanted to catch you up on whats happening and tell you why I haven't been around. I have missed reading what you have to say - to others as well as myself - you are a wonderful writer as well as helpful. I am sorry that there is not the oppertunity to to meet you in person.
I do hope you are well,
Sheila, good luck at your appointment Wednesday!!!! Hope you can start getting some answers!!! Thoughts and prayers, Jen
Thanks for the nice compliment. When you've been to that place
in life, not too hard to reach out. Sorry to hear abt the mess.
I was the one saying hold off prism increase. Try Orthoptist
1st. Your healthcare system stinks. I would have suggested the
patch too. Maybe this Dr can figure things out. The diazepam
should've helped unless it's too lo-dose. Don't up it though.
Nor the Neurontin. You need more input from Weds. appt. N-rx
is like I said. You get use to it & they then dbl-dose ya'. It's
a shame they didn't try Xanax. It wks faster for a spasm over
the Diaz. yet leaves system in 4-5 hrs to see response. Maybe
more time w/ Diaz-rx will help. Have you tried ice-pak over the
eyes w/ any help? I scratched cornea yrs ago & they patched it
tight, but the eyes move together so I had to keep other closed
so cornea didn't rub on inside lid. Couldn't believe how much
pain I had. I finally knocked myself out 2 days w/ drugs till
healed. The severe muscle pull must be awful for you. Each
glance yanks on them. I think the correct lens prism is the key
but knowing how much is at the top. If the exam was painful,
I'm confused. The exam w/ the prism test, you said was great.
Now your last exam was horrible. Is Neurontin helping or making
worse? May be helping other problems but why the increase in
eye problems? We can do catch up later. Will look for your appt
post after Weds. when you can. I really hope you get a break!
Take care & hug that little darling of yours for luck. Later.
Hi Demi, Well, I've seen the orthoptist and I guess I'm still kind of processing the info really. It was not a plesant experience and I have no idea what use its going to be to the neuro. If only I could have been seen when my eyes were at their worst - I am getting so frustrated with this always waiting and being tested when things are not so bad - always leaves doubts in my mind about whats being missed!!!
The orthoptist, who is so sweet to kids, must think it unneccessary to be that way with adults - she was so flippant with me, that I retreated into my shell, and of course, came away with my head full of stuff I should have said. I told her about the severe headaches after optometrist exam, and she said "yeah well - you're going to have a worse one after this, but theres nothing I can do about that". I guess that was a reasonable thing to say - Its the way she said it that bugged me.
So she put me through some hell tests - very impatiently - and says I'm not a candidate for surgery, and that she does not want me to increase the glasses prisms, but wants me to do these awful focusing exercises that will (she acknowleges) give me more hell headaches. I nearly burst into tears - and I wish I had allowed myself to now, as I never told her how much pain I'm already in each day and if I add this to the mix, I'm afraid of how I'll cope. I just kind of stared at her dumbly and left.
She says if I do these exercises I'll get better at some point and be able to control my eyes again. She did'nt seem to be interested in whats causing the problem to get worse suddenly - just in the fact that I have strabismus and that this will be a life long battle for me - harder as I get older - unless I keep doing the exercises. Lovely. She explained that the problem didn't go away when I was 15 as I thought it did - I just learned to control it.
Strangely enough, I don't have a headache today - eyes are a bit sore, but nothing major - they hurt alot last night so I got into a nice warm bath and relaxed as much as I could and I think that made a difference. I guess what was bugging my eyes so much has now improved enough for me to handle more re-focusing - which is great, but it would be nice to know what caused it! As its the forth time in a year, my guess is it'll be back.
Anyway, time to stop complaining! I will have to get into those exercises. I have been going to a rehab gym with the help of a PT for the last 6 weeks and it was real hard at first, but I've settled into a nice rutine now - know what my limits are, and I'm feeling really good about my progress - hard sometimes when I see a little old lady come and push 60 on the leg press when I can only do 30 "but I can only do two reps at that weight dear" -I did'nt mention I can only do one, or my knees burn so bad I can't sleep! Hard to believe that this is the very gym I used to show off my bulging muscles at 20 years ago Haha.
Oh - to clarify - I did tell you the prism felt good at the optometrists exam - it did, but I only experienced it for a few seconds - the rest of the time my eyes went through alot of tests very fast with no breaks to refocus - I felt the muscles around thim spasming straight afteer I left and then the bad eye pain started.
I am no longer sure what the neurontin is doing for me - guess I'd have to go off it to find out. I know I don't get dizzy anymore and don't feel the pressure at the back of my head, but it doesn't seem to have helped the pain at all.
The diazapam dose the pharmasist described as a 'mere sprinkling' so I guess thats why it didn't work - don't want to up it as side effects are horrid - even with a mere sprinkling.
Well thats me - now I have to wait for the neuro again.
Hope you are well and thanks again for your input :-)
I'm so sorry to hear that the appt went badly. I know exactly what it's like to think of what should've been said/asked on the
way home! Atleast you can openly curse that person & vent it.
Many in optical or medical fields get in a routine & forget you
have a pulse & feelings. They talk over you & around. Oddly, I
have had those experiences & found some to be the 'lets get to
it' type that knows what they're doing. Just lousy to be with!
I have been searching the net to find anything that might help
you understand what's going on from a medical point. Not light
read site, but it does apply to your strabismus & may help you
understand what treatments are used. In the US, we often try
the excercises to attempt to strengthen muscles to a degree &
then overtime, it helps to decide how much prism is to be used.
Even the eyepatch is used off/on. Most patients are children &
surgery is a short cut but often parents want to go glasses/
excercise first. In adults, you have the intelligence over kids
to know when/how long/patch etc. No pain no gain? This article
will help you alittle to know that just 'maybe' this will work.
She WAS right (sorry) when she suggested you just learned to
accomodate. It was your brain that did it & not you doing it
consciously. The nerve response of GABA helps with many neuro
things. Even stabilizing muscle spasms to ocular area. Now that
your on Neurontin w/ no problems, it might work along w/ the
excercises since N is Gaba-base drug. It wouldn't hurt to up
dose like Dr said, but I would consider 'as suggestion' so
forum doesn't pounce me for practicing-advise, maybe adding 1
a.m. & 1 pm or what your schedule is. Double-dose would be hard
to get back dwn if you had a response. The Diaz. rx might be
reserved for stress or at bed? It's a muscle relaxant & you
don't want to relax the eye-muscles during day while focusing.
Rude makes for anxiety & she is just a stupid person w/ people
but may know her work. This website is very good in explaining
how much is involved w/ problem. You don't have to understand
it but ask me ?'s if you are confused. Beginning is boring but
scroll dwn to: Treatments for Strabismus & Amblyopia. Might
help reading for yourself how some things work.
Also, have you heard of: The New Zealand College of Opthalmologists? Not sure if based in NZ or AU. They appear to
take patients for various studies & 1 is strabismus. It's
getting long & late here so I'll touch base w/ you later. Just
wanted you to know I think gal was jerk but may help. The
article may give you some thoughts & that may lessen anxiety.
Talk later. Now I'm going to hit the tub!
Hello Demi, Thanks so much for giving me that website - I have searched alot for info, but always seem to find its aimed at kids - nothing about adult strabismus. I will do the exercises, and suspect that these will not give me pain like i thought, as I forgot to mention (guess I didn't think it relevant at the time)that I have been on antibiotics for a sinus infection. I suspect that its been around for some time, but it took me ages to realise what it was - woke up in the middle of the night feeling like my face was going to explode and the peeny dropped.
Anyway - The strange thing is, not only have the antibiotics cleared up the sinus infection, but my muscle & joint pain (including eyes) seems to have drasticly reduced as well - only a fortnight ago I was contemplating giving in and asking for some major painkillers - never mind what they did to my brain - didn't really care anymore as the pain was unbareable. And today I am sitting here with just a bit of annoying stiffness, which I can get rid of if I have a good stretch and maybe a bath.
It'll be interesting to see what the neuro thinks about this. I have had this pain constantly for the last 6 months really and maybe its a coincidence about the antibiotics, but the timing is there. Any ideas?
Had a look at the NZ college of ophthalmologists - looks like it is based in AU - need to have a more in-depth look.
I have to go right now - my little girl is sick with flu and is calling out for her mum.