Aa
Demiguise - Should I still be wearing these glasses?
Hi Demi - here I am again - hope you don't mind yet another question, but I really could use your help on this one. I've been pretty ill since we talked last with more and more pain in my face esp. round the eyes - this is unusual for me. I have had 2 severe migraines which were felt mostly at the back of the eyes (both) and have taken days for the eye pain to go away. I'm now wondering if I should be wearing these glasses as I notice when I take them off, my vision is not as bad as it used to be. Everything used to swim and now its not so bad - just weird when theres movement and I can feel my eyes trying to adjust. I'm wondering if they have changed again and the prism is now straining my eyes? do you think thats possible?.
I saw my Neuro last week and asked him if he would refer me to an ophthalmologist (my doc refused when I asked her - said it was just migraines - her answer to everything now)- he said he felt an orthoptist would be more appropriate & would look at a referal when I see him next in 2 weeks. I'm wondering if I should wait that long as referal will take a while - other option is to go to see optometrists again - very expensive and I'm rather cash-strapped at right now. I think the prism is 4-5 diopters.
In case you're interested, the MRI came out normal again. Lovely Neuro gave me Imitrex injections for those real bad episodes and 900mg Neurontin /day to try. He says he still doesn't have a dx for me, but he's going to try to treat symptoms in the mean time.
I saw my Neuro last week and asked him if he would refer me to an ophthalmologist (my doc refused when I asked her - said it was just migraines - her answer to everything now)- he said he felt an orthoptist would be more appropriate & would look at a referal when I see him next in 2 weeks. I'm wondering if I should wait that long as referal will take a while - other option is to go to see optometrists again - very expensive and I'm rather cash-strapped at right now. I think the prism is 4-5 diopters.
In case you're interested, the MRI came out normal again. Lovely Neuro gave me Imitrex injections for those real bad episodes and 900mg Neurontin /day to try. He says he still doesn't have a dx for me, but he's going to try to treat symptoms in the mean time.
Try to avoid the fibro-trap. Don't get that in your file or you'll really be stuck. In US it's gone from 6 to 11 tender
points to evaluate w/ no labs to confirm. It's a real condition
but used too often to categorize. If someone just taps you here
& there in parts of back points, it will 'really' hurt. It's
not, 'I ache all over' like some think. They are points that
shoot pain when touched. Then many that swore had it, were
studied & found they got better when surrounded by alot of joy
that suddenly happened to them & it was gone. Threw out alot of
theory. As far as L-puncture, never had one, don't want one, &
totally refused one. Only have done by Dr you've totally ck'd
out. Some hurt medium & friend came home in wheelchair for 3 mo.
from a oops! Sometimes necessary. I think you're correct on
considering they might not be on to the 'big picture'. Dr's are
wearing a hat of respect. You need a copy sent to you of your
glass rx. Say 'in case I have to travel'. Make copies. Next
Neuro appt, hand it to him for your file as reference, just in
case it matters! He'll then see it off/on w/ file reviews. It's
now on file in case he's not avail. or you get another doc. Keep
orig. & carry if in accident to alert & avoid error thinking
eye problem was from injury. The head thrashing as a kid was
poss. due to eye spasm triggered by dream state. It's a common
symptom w/ esophoria. Tremor starts & trips the nerves. Must
have been very hard on you. Generally convergence can't work &
kids see things smaller or a foot off from spot. The 5D of prism
actually are abt 2-3 degrees of pull on eye. Hard to explain
but tells me the Orthoptist (I lk'd up), would be of great help
& they should be given a copy at 1st appt to get busy. Xanax is
a smooth muscle relaxant besides for anxiety. Like Neurontin is
off label use for you. Both wk. on Gaba in the brain firing. I
get hd-pressure on windy days. It sedates 'chloride-ion channel'
& head + skull base pressure sorta' pops. It's like a door
spot that opens/closes. The same receptors can trigger migraine
attacks. I told doc, since we don't know cause, just sedate the
spot & open channel. Pacified me till we got correct dose. The
spine swells & msg goes to head & same thing happens. Neurontin
will help spasms in same way. It just has to stay in system
daily. Xanax-(Alprazolam) wks. fast & leaves system in 4-6 hrs.
Only take per-need. Dr isn't pharmacist so don't know all the
written stuff. Maybe get a hand-out on that rx & highlight area
that says 'can cause nystagmus'. It's their field. You can
google or I'll give you one to print off net. The prism is to
stop pull in wrong direction & nystagmus may start from drug.
Ambien comes in 5 or 10mg & may slight sedate the eye muscle.
It's ok w/ Neurontin. Just use when you know you can get 8 hrs
to test it or you'll drag through day. I've used 10mg when I
know I just need to shut down. Many ofc's have 5mg samples if
you ask. I think you're on to something. The 10 are scored to
break.
points to evaluate w/ no labs to confirm. It's a real condition
but used too often to categorize. If someone just taps you here
& there in parts of back points, it will 'really' hurt. It's
not, 'I ache all over' like some think. They are points that
shoot pain when touched. Then many that swore had it, were
studied & found they got better when surrounded by alot of joy
that suddenly happened to them & it was gone. Threw out alot of
theory. As far as L-puncture, never had one, don't want one, &
totally refused one. Only have done by Dr you've totally ck'd
out. Some hurt medium & friend came home in wheelchair for 3 mo.
from a oops! Sometimes necessary. I think you're correct on
considering they might not be on to the 'big picture'. Dr's are
wearing a hat of respect. You need a copy sent to you of your
glass rx. Say 'in case I have to travel'. Make copies. Next
Neuro appt, hand it to him for your file as reference, just in
case it matters! He'll then see it off/on w/ file reviews. It's
now on file in case he's not avail. or you get another doc. Keep
orig. & carry if in accident to alert & avoid error thinking
eye problem was from injury. The head thrashing as a kid was
poss. due to eye spasm triggered by dream state. It's a common
symptom w/ esophoria. Tremor starts & trips the nerves. Must
have been very hard on you. Generally convergence can't work &
kids see things smaller or a foot off from spot. The 5D of prism
actually are abt 2-3 degrees of pull on eye. Hard to explain
but tells me the Orthoptist (I lk'd up), would be of great help
& they should be given a copy at 1st appt to get busy. Xanax is
a smooth muscle relaxant besides for anxiety. Like Neurontin is
off label use for you. Both wk. on Gaba in the brain firing. I
get hd-pressure on windy days. It sedates 'chloride-ion channel'
& head + skull base pressure sorta' pops. It's like a door
spot that opens/closes. The same receptors can trigger migraine
attacks. I told doc, since we don't know cause, just sedate the
spot & open channel. Pacified me till we got correct dose. The
spine swells & msg goes to head & same thing happens. Neurontin
will help spasms in same way. It just has to stay in system
daily. Xanax-(Alprazolam) wks. fast & leaves system in 4-6 hrs.
Only take per-need. Dr isn't pharmacist so don't know all the
written stuff. Maybe get a hand-out on that rx & highlight area
that says 'can cause nystagmus'. It's their field. You can
google or I'll give you one to print off net. The prism is to
stop pull in wrong direction & nystagmus may start from drug.
Ambien comes in 5 or 10mg & may slight sedate the eye muscle.
It's ok w/ Neurontin. Just use when you know you can get 8 hrs
to test it or you'll drag through day. I've used 10mg when I
know I just need to shut down. Many ofc's have 5mg samples if
you ask. I think you're on to something. The 10 are scored to
break.
Just a few other thoughts. I know this is long - hope you're feeling up to it. As you can see, theres so much info to give and I know I'm not telling the Neuro enough - always come away from seeing him wondering if I should have explained things more etc, but don't want to bombard him with too much info. He is really great - I think he sees me as a challange which I appreciate - hes not jumping the gun with a dx of fibromyalgia which seems to be the usual substitute for 'I don't know so I want to get rid of you'. Although he did mention it as a possibility. Don't know where hes going to go next - got the impression he was going to do some reading before I see him again. They don't seem to jump in and do lots of tests here like they do in the states - I've never had a lumbar puncture.
Don't know what Xanax is - we have different nemes for most meds here - imitrex is called imigran etc, so it gets confusing - will google it. Here they increase dose of neurontin by 1 a day.
I seriously wonder if all or some of this comes from some sort of sleep disorder. Never thought to mention it for some reason, but as a child I had a strange habit of rolling my head from side to side while asleep and in the morning it would sometimes take up to an hour to brush the knots out of my hair - which earned me the nickname of 'moppy'. My parents never made anything of it & said I'd grow out of it. I did'nt really - did it every night until I finally went to live with a partner @ 26 yrs - had to stay half awake for weeks to keep from doing it & then it slowly went away. Started doing it again briefly during illness last year, but not since. I've never heard of anyone else who did something like that & have never come across it in the forums - its just one more thing I don't know whether to mention to Neuro or not. Any ideas?
I'll stop now - hope you haven't fallen asleep.
Cheers xx
Don't know what Xanax is - we have different nemes for most meds here - imitrex is called imigran etc, so it gets confusing - will google it. Here they increase dose of neurontin by 1 a day.
I seriously wonder if all or some of this comes from some sort of sleep disorder. Never thought to mention it for some reason, but as a child I had a strange habit of rolling my head from side to side while asleep and in the morning it would sometimes take up to an hour to brush the knots out of my hair - which earned me the nickname of 'moppy'. My parents never made anything of it & said I'd grow out of it. I did'nt really - did it every night until I finally went to live with a partner @ 26 yrs - had to stay half awake for weeks to keep from doing it & then it slowly went away. Started doing it again briefly during illness last year, but not since. I've never heard of anyone else who did something like that & have never come across it in the forums - its just one more thing I don't know whether to mention to Neuro or not. Any ideas?
I'll stop now - hope you haven't fallen asleep.
Cheers xx
Thanks Demi - great to hear from you again! Well where to start.
I started on the Imitrex 6 weeks ago. Neuro said only 3 a week & that drove me crazy as it realy helped & felt like I needed it every day. Always had to decide if today was bad enough to use one and what if tomorrow is worse? etc. Last week neuro said you can take them more often & I got worried about risks as I had Myocarditis after mono @ 19yrs & I read not a good idea if history of heart probs.
I asked for the Neurontin after reading up on it - I think he gave it to me because he did'nt know what else to do - other drug options have caused awful side effects - I'd tried everything on his usual list. I'm supposed to trial it for 3 weeks & go back and see him. Only started it on saturday - no real side effects at all - although I did get a racing heartbeat today & had to sit down on the floor in the middle of a shop to keep from passing out. This is not new - happens occasionally - maybe twice a year, when I bend over or get too hot. I'll know its the meds if it happens again soon. From what I've read, there is no interaction between Imitrex & Neurontin. I do feel my problem is from spasms, but also Inflamation so we'll see if it makes any difference.
I have only had 2 days where I felt good in the last month so I do feel things are worsening - the worse part is that my arm muscles get very inflamed with hard lumps in them - they ache all the time & hands are weak & their coordination seems to be poor (hard to put lids on thigs etc). poor Massaging them brings alot of temporary relief. Its strange - imitrex is supposed to be for headaches, but I find it takes the pain in my arms away.
An orthoptist specialises in squints / lazy eyes etc - Neuro thinks more appropriate than ophthalmologist for me. I can drive without glasses - tried this morning - feels weird, but I can do it. The optometrists report to doc said my esophoria measured 4-5 diopters - didn't say if thats what Rx was. Measured 2 diopters early in the illness before double vision started. have slight astigmatism in left eye.
I have to go eat dinner - thanks again. XX
I started on the Imitrex 6 weeks ago. Neuro said only 3 a week & that drove me crazy as it realy helped & felt like I needed it every day. Always had to decide if today was bad enough to use one and what if tomorrow is worse? etc. Last week neuro said you can take them more often & I got worried about risks as I had Myocarditis after mono @ 19yrs & I read not a good idea if history of heart probs.
I asked for the Neurontin after reading up on it - I think he gave it to me because he did'nt know what else to do - other drug options have caused awful side effects - I'd tried everything on his usual list. I'm supposed to trial it for 3 weeks & go back and see him. Only started it on saturday - no real side effects at all - although I did get a racing heartbeat today & had to sit down on the floor in the middle of a shop to keep from passing out. This is not new - happens occasionally - maybe twice a year, when I bend over or get too hot. I'll know its the meds if it happens again soon. From what I've read, there is no interaction between Imitrex & Neurontin. I do feel my problem is from spasms, but also Inflamation so we'll see if it makes any difference.
I have only had 2 days where I felt good in the last month so I do feel things are worsening - the worse part is that my arm muscles get very inflamed with hard lumps in them - they ache all the time & hands are weak & their coordination seems to be poor (hard to put lids on thigs etc). poor Massaging them brings alot of temporary relief. Its strange - imitrex is supposed to be for headaches, but I find it takes the pain in my arms away.
An orthoptist specialises in squints / lazy eyes etc - Neuro thinks more appropriate than ophthalmologist for me. I can drive without glasses - tried this morning - feels weird, but I can do it. The optometrists report to doc said my esophoria measured 4-5 diopters - didn't say if thats what Rx was. Measured 2 diopters early in the illness before double vision started. have slight astigmatism in left eye.
I have to go eat dinner - thanks again. XX
Sorry to hear you're having problems still. Nice to hear from a
kind voice for a change. Getting older & seems I just try to
help & have a few on the board that's been dogging/bashing/name-
calling/rude lil' twits. I answer a few once in awhile. Anyway,
to your problem. If I had your glasses I could advise better.
I recall you were gd. w/ them except at bed w/ pulling muscle?
4-5 Diopters prism is quite alot but needed in some. Do you
have hi-astig. along w/ it? It may be several things. The other
eye is compensating for too much prism? Rx was gd. but the meds
have altered sight. Imitrex lessons tears causing eye strain?
This med also effects & weakens small muscles. Neurontin has
been known to cause dbl-vision & trigger horizontal nystagmus w/
too much. If both rx's are in you, brain may be getting confused
& blurring glasses. I don't know how they interact so I'd call
pharmacist. You have a unique case that may have been overlooked
w/ your eyes. We all respond different to meds. Neurontin in US
is like a designer-drug fad that Dr's write for everything to
try or pacify. I tried it. Got a brain-fog result by 2nd day.
Brain will adjust/need to titrate higher. I was shocked when I
spk to friend on 4000mg a day. He was a zomby & hospitalized to
wean off totally. He still had pain/acquired slow speech/then
had a seizure while they lowered him too quick. Like you, he
never had seizures, was for spine-pain. Cheap G-type Xanax wks
on the same neurons. Lo-dose isn't addicting like they all say
unless your profile goes that way. If I stop a.m. coffee, I'm
lousy all day being deprived. Doesn't mean I'll punch someone.
Sounds like you got trapped like I mentioned abt the 'can't be
anything but'! Is Orthoptist like our Orthopedist for skeletal
or is that like a chiro (manipulation)? Is it for neck? Ask
abt the combined meds. Meds may have settled eyes & glasses
are acting like a 3rd rx when wearing them. How strong? Can you
drive w/o them or a blur? I think meds altered eyes. Maybe call
eye ofc & ask them to ck. your rx & ask Dr. if that would have
changed from the new meds started. Eye-strain will make hdache
trigger & then they'll up meds. Maybe titrate dwn or off the
Neurontin to test glasses? Then if same, go back on it from the
starting dose. Sounds like you're on 3 a day, so try 2 instead
& wear glasses? Many start at 1xday for 3 days, then 2 a day for
3 days to 3. If dizzy/nausea/off balance starts, you may need
less. My trial was only to pacify doc. If Neurontin works,
it's a costly keeper. They treat it like a cure all anti-
spasmodic. Great for seizures & migraines if they know that
it's from spasms. If it's vascular flow problem or inflamm.,
you won't get much & a cheaper rx will help more. Can't help
wondering if the nystagmus was back from meds. Talk later.
kind voice for a change. Getting older & seems I just try to
help & have a few on the board that's been dogging/bashing/name-
calling/rude lil' twits. I answer a few once in awhile. Anyway,
to your problem. If I had your glasses I could advise better.
I recall you were gd. w/ them except at bed w/ pulling muscle?
4-5 Diopters prism is quite alot but needed in some. Do you
have hi-astig. along w/ it? It may be several things. The other
eye is compensating for too much prism? Rx was gd. but the meds
have altered sight. Imitrex lessons tears causing eye strain?
This med also effects & weakens small muscles. Neurontin has
been known to cause dbl-vision & trigger horizontal nystagmus w/
too much. If both rx's are in you, brain may be getting confused
& blurring glasses. I don't know how they interact so I'd call
pharmacist. You have a unique case that may have been overlooked
w/ your eyes. We all respond different to meds. Neurontin in US
is like a designer-drug fad that Dr's write for everything to
try or pacify. I tried it. Got a brain-fog result by 2nd day.
Brain will adjust/need to titrate higher. I was shocked when I
spk to friend on 4000mg a day. He was a zomby & hospitalized to
wean off totally. He still had pain/acquired slow speech/then
had a seizure while they lowered him too quick. Like you, he
never had seizures, was for spine-pain. Cheap G-type Xanax wks
on the same neurons. Lo-dose isn't addicting like they all say
unless your profile goes that way. If I stop a.m. coffee, I'm
lousy all day being deprived. Doesn't mean I'll punch someone.
Sounds like you got trapped like I mentioned abt the 'can't be
anything but'! Is Orthoptist like our Orthopedist for skeletal
or is that like a chiro (manipulation)? Is it for neck? Ask
abt the combined meds. Meds may have settled eyes & glasses
are acting like a 3rd rx when wearing them. How strong? Can you
drive w/o them or a blur? I think meds altered eyes. Maybe call
eye ofc & ask them to ck. your rx & ask Dr. if that would have
changed from the new meds started. Eye-strain will make hdache
trigger & then they'll up meds. Maybe titrate dwn or off the
Neurontin to test glasses? Then if same, go back on it from the
starting dose. Sounds like you're on 3 a day, so try 2 instead
& wear glasses? Many start at 1xday for 3 days, then 2 a day for
3 days to 3. If dizzy/nausea/off balance starts, you may need
less. My trial was only to pacify doc. If Neurontin works,
it's a costly keeper. They treat it like a cure all anti-
spasmodic. Great for seizures & migraines if they know that
it's from spasms. If it's vascular flow problem or inflamm.,
you won't get much & a cheaper rx will help more. Can't help
wondering if the nystagmus was back from meds. Talk later.
Hi Duchess - Yes I've had a head CT and two brain & spinal chord MRIs as I was suspected of having MS - the eye problem is just one of many unexplained symptoms which started a year ago - Demi has helped me alot in the past and I know she has a great deal of knowlege in the eye area so thats why I was asking her. Not sure why I haven't seen an ophthalmologist - I live in New Zealand and everything moves very slowly in the hospital system here - if you want to speed things up, you have to pay. I saw an optometrist initially who gave me the glasses and it all cost me over $1000. My illness makes it difficult to work, so I am tired of using my small income on paying for all this when you can get it free through the hospital - it just takes some specialist to say 'this person needs it more than the 100s already on the waiting list'. And thats a big ask. I am an Artist - and successful one in spite of the small output I have - so my eyes are majorly important to me.
HI, have you had a CTSCAN of you eyes? Why haven't you seen an ophthalmologist?
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