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.
I've been reading some bizarre stuff & I'm sorry to read your back to the focus on MS again. It's what you have to do. An
above post stated that demyelination can remyelinate 'hiding'
scars & lesions. The clear mri stated they found lesions in the
occipital & I guess they disappeared? Mri can detect scars, tumors (all called lesions), by testing w/ a T1/T2 Mri format
of brain mri. MS can come & go, but when they learn how to
remyelinate neurons, we'll be able to cure Alzheimers. Don't ask
the neuro. You have enough going on. It was the total picture
& the LP that even showed the lost myelin. This can happen in
other disorders since we have myelin in other parts besides
our brain. I wish you good health. Hope you find your answer.
above post stated that demyelination can remyelinate 'hiding'
scars & lesions. The clear mri stated they found lesions in the
occipital & I guess they disappeared? Mri can detect scars, tumors (all called lesions), by testing w/ a T1/T2 Mri format
of brain mri. MS can come & go, but when they learn how to
remyelinate neurons, we'll be able to cure Alzheimers. Don't ask
the neuro. You have enough going on. It was the total picture
& the LP that even showed the lost myelin. This can happen in
other disorders since we have myelin in other parts besides
our brain. I wish you good health. Hope you find your answer.
Just in case you happen to read in time - I don't have Rx info yet - optometrist staff are being idiots - said they can't give me copy of rx cos opto has to sign it - will ring when ready etc - no calls so far - also not keen to let me test lenses, but will talk to opto - hah!. Decided to wait to see ortho - my doc is going to try & hurry apptmnt up. Will start a new thread when I have more info. Thanks again. S
If you have any of these notes you want to read later, best
do it soon. Makina is board jamming w/ things & some read like
KevieLover! 'someone will help you or go to Dr.'. She has a
very serious condition going ignored. I hint suggestions but
can't say things up-front to a stranger on a board. I know of 2
that will get brain damage or die that took comment lightly.
Mak. just needs a fall or slt fender-bender & she can fracture
neck or be paralyzed. Latest problem is why am I sleepy from rx?
It's like a chat room to some. My gut can read fibs & the made
up stuff. It's hard to know a poss. outcome & then read the giggles. Now I'm venting! It's their life. Anyway, ck. back w/
update abt you/mom when you get chance. This post is moving to
the end & will be gone soon. Later.
do it soon. Makina is board jamming w/ things & some read like
KevieLover! 'someone will help you or go to Dr.'. She has a
very serious condition going ignored. I hint suggestions but
can't say things up-front to a stranger on a board. I know of 2
that will get brain damage or die that took comment lightly.
Mak. just needs a fall or slt fender-bender & she can fracture
neck or be paralyzed. Latest problem is why am I sleepy from rx?
It's like a chat room to some. My gut can read fibs & the made
up stuff. It's hard to know a poss. outcome & then read the giggles. Now I'm venting! It's their life. Anyway, ck. back w/
update abt you/mom when you get chance. This post is moving to
the end & will be gone soon. Later.
Hi Demi - sorry no answer til now - I'm in a better head space today - thinking more clearly. Have not got the Rx yet - bad day yesterday - will get it on monday. I do know the problem is horizontal not vertical. I do have both muscle pull and wandering - the wandering has worsened in the last few weeks. The left eye astig. is only slight apparently. Anyways, I'll get the Rx to be sure. As for mum, she can't seem to describe it more clearly than she had - your description of 'flushing' pretty much nails it I think. Her BP has always checked out good and shes pretty sure it was good @ her recent pre-op. Interesting about the CSF theory - she had Thyroid tests recently - not sure how extensive, but I do know they only tend to do most basic here and my pharmacist told me the local lab is useless in that department. The tests were 'normal'. She has always been overweight from infancy in spite of a very good diet. 6 years ago, she got a thunderclap headache with vomiting - no history of migraine and rarely minor headache - she went to hospital - suspected subarachnoid hemorage - small hospital here, so limited testing avail - think I told you that junior doc botched LP and she had to be flown to big city hospital - lots of testing later, they still weren't sure what had happened - by then, alot of symptoms could be put down to botched LP. The flushings started about a year later I think. She is 63 and says shes well past menopause although she did get a period a few years ago & refused to go get herself checked out - thats my mum - stubborn and stoical.
Have to go - will post Rx as soon as I have it. Thanks again for all your time Demi. X
Have to go - will post Rx as soon as I have it. Thanks again for all your time Demi. X
Must be board problem. Only hit comment once & see it's there
twice. This a getting to be a long thread! Later.
twice. This a getting to be a long thread! Later.
Re: Mom, hormones have many types. Female/thyroid are just 2.
She would have to have a FSH+LH blood-ck to see. Some women
have started menapause abt 40 & then it stops. Then 5 yrs later,
can come back as peri-menapause that resembles some symptoms.
Stress hormones can affect CSF 'spinal fluid pressure'. If she
has hypertension from heart or other problems, the CSF can make
too much off/on & cause what some can describe as head prssr.
I've heard `flushing'. I asked someone what that meant to them.
1 said feeling of warm prssr, other said like a toilet was
pushing too much water prssr till it stopped. I don't know what
it means in NZ or w/ Mom. Hypertension is just an idea that's
easier to dx. There's also sitting hypertension from CSF build-
up & then a rush to head ocurrs. Prssr here is best at 120/80.
If daily #'s are aprx 140/90, meds are needed. They widen the
arteries/vessels & control CSF. If excess vessels fluid is keep-
ing BP up, a diuretic is added. CSF is made 3-4xDay evryday.
Just my thought. Get her to describe more clearly or ck BP.
As for you, wish I could send you some of my brain to explain
better. Don't know how NZ wks. w/ refractions but think it's
close to ours. When you mentioned 5 D-prism, didn't want to get
you more confused since I don't know full power of lenses &
whether prism is 'base in or out' or base up or down.' It is
the way rx is needed along w/ reg-lens rx. If eye is a muscle-
pull or a wanderer = 2 diff. situations. Say I need to put 3D
in a vertical type curve of a rx, if it's there 1st prism rx,
I might try a 3 base-up 1 lens. Or I have option of doing 1 +
1/2 up in rt & 1+1/2 down in left to create soft convergence.
In horizontal, it's easier. If prism was 4, I'd split 2 & 2.
Yes, I think it should be split for comfort. I hope they are
giving you discount &/or returning previous lenses you paid
for. Always make request for old rx to be returned & then save.
You can put them in a back-up pair later as spare. Are they
glass or plastic lens? Clear or tinted? And who cares if Dr
doesn't like you having script. They are afraid you'll take it
elsewhere later & get a better cost. Get old & new scripts.
Need a break. Talk later.
She would have to have a FSH+LH blood-ck to see. Some women
have started menapause abt 40 & then it stops. Then 5 yrs later,
can come back as peri-menapause that resembles some symptoms.
Stress hormones can affect CSF 'spinal fluid pressure'. If she
has hypertension from heart or other problems, the CSF can make
too much off/on & cause what some can describe as head prssr.
I've heard `flushing'. I asked someone what that meant to them.
1 said feeling of warm prssr, other said like a toilet was
pushing too much water prssr till it stopped. I don't know what
it means in NZ or w/ Mom. Hypertension is just an idea that's
easier to dx. There's also sitting hypertension from CSF build-
up & then a rush to head ocurrs. Prssr here is best at 120/80.
If daily #'s are aprx 140/90, meds are needed. They widen the
arteries/vessels & control CSF. If excess vessels fluid is keep-
ing BP up, a diuretic is added. CSF is made 3-4xDay evryday.
Just my thought. Get her to describe more clearly or ck BP.
As for you, wish I could send you some of my brain to explain
better. Don't know how NZ wks. w/ refractions but think it's
close to ours. When you mentioned 5 D-prism, didn't want to get
you more confused since I don't know full power of lenses &
whether prism is 'base in or out' or base up or down.' It is
the way rx is needed along w/ reg-lens rx. If eye is a muscle-
pull or a wanderer = 2 diff. situations. Say I need to put 3D
in a vertical type curve of a rx, if it's there 1st prism rx,
I might try a 3 base-up 1 lens. Or I have option of doing 1 +
1/2 up in rt & 1+1/2 down in left to create soft convergence.
In horizontal, it's easier. If prism was 4, I'd split 2 & 2.
Yes, I think it should be split for comfort. I hope they are
giving you discount &/or returning previous lenses you paid
for. Always make request for old rx to be returned & then save.
You can put them in a back-up pair later as spare. Are they
glass or plastic lens? Clear or tinted? And who cares if Dr
doesn't like you having script. They are afraid you'll take it
elsewhere later & get a better cost. Get old & new scripts.
Need a break. Talk later.
Thanks again Demi - and thanks for your help with my mum. Interesting comment about menopause - why? She is probably about over it now, but never really had symptoms. Its not flushing in the skin - she feels it through her brain. My mother never gets sick so this is a suprise to her - she really doesn't know how to deal with me being ill as she can't relate at all. but I guess she does OK.
Anyway, I was down at the Optometrists today - getting some fit-over sunglasses to give eyes a break and they told me they would put new prism into left lense (current is in right) to balance it up and lessen pull on right eye. Does this sound like a good idea? I will get exact Rx info off them - I'll tell them Neuro is sending me to orthoptist & I need it for the appointment.
I don't know when the appointment will be - Neuro said he would refer when I saw him last week - he is well known for his slackness on paperwork, so it may be some time before its recieved at the orthoptists end - think I will ring and put pressure on for early appointment - not sure it'll help, but heres hoping. Know the ortho is good - my daughter has same convergence problem and sees her - ortho has same problem herself which is why she chose that feild, so one can be sure she knows all there is to know.
I was going to order the lenses - I have had severe pain in my eyes in the last 3 days & today was more than I could stand, but when they said about the laeft lense, I really did start to wonder again if I was doing the right thing. It'll be 2 weeks before they can get it anyway and I may have ortho appointment by then. Still. it is a good idea about the test pair, and I don't see why they can't do it - although I know they won't want to - they make it pretty obvious I'm a difficult customer they'd rather not have because I do unusual things like ask for a report for my doctor etc. Still, it sounds quite reasonable to me. Sorry about the rant yesterday - was feeling really low and fed up. Thanks for sticking in there. :)
Anyway, I was down at the Optometrists today - getting some fit-over sunglasses to give eyes a break and they told me they would put new prism into left lense (current is in right) to balance it up and lessen pull on right eye. Does this sound like a good idea? I will get exact Rx info off them - I'll tell them Neuro is sending me to orthoptist & I need it for the appointment.
I don't know when the appointment will be - Neuro said he would refer when I saw him last week - he is well known for his slackness on paperwork, so it may be some time before its recieved at the orthoptists end - think I will ring and put pressure on for early appointment - not sure it'll help, but heres hoping. Know the ortho is good - my daughter has same convergence problem and sees her - ortho has same problem herself which is why she chose that feild, so one can be sure she knows all there is to know.
I was going to order the lenses - I have had severe pain in my eyes in the last 3 days & today was more than I could stand, but when they said about the laeft lense, I really did start to wonder again if I was doing the right thing. It'll be 2 weeks before they can get it anyway and I may have ortho appointment by then. Still. it is a good idea about the test pair, and I don't see why they can't do it - although I know they won't want to - they make it pretty obvious I'm a difficult customer they'd rather not have because I do unusual things like ask for a report for my doctor etc. Still, it sounds quite reasonable to me. Sorry about the rant yesterday - was feeling really low and fed up. Thanks for sticking in there. :)
Re: Mom, hormones have many types. Female/thyroid are just 2.
She would have to have a FSH+LH blood-ck to see. Some women
have started menapause abt 40 & then it stops. Then 5 yrs later,
can come back as peri-menapause that resembles some symptoms.
Stress hormones can affect CSF 'spinal fluid pressure'. If she
has hypertension from heart or other problems, the CSF can make
too much off/on & cause what some can describe as head prssr.
I've heard `flushing'. I asked someone what that meant to them.
1 said feeling of warm prssr, other said like a toilet was
pushing too much water prssr till it stopped. I don't know what
it means in NZ or w/ Mom. Hypertension is just an idea that's
easier to dx. There's also sitting hypertension from CSF build-
up & then a rush to head ocurrs. Prssr here is best at 120/80.
If daily #'s are aprx 140/90, meds are needed. They widen the
arteries/vessels & control CSF. If excess vessels fluid is keep-
ing BP up, a diuretic is added. CSF is made 3-4xDay evryday.
Just my thought. Get her to describe more clearly or ck BP.
As for you, wish I could send you some of my brain to explain
better. Don't know how NZ wks. w/ refractions but think it's
close to ours. When you mentioned 5 D-prism, didn't want to get
you more confused since I don't know full power of lenses &
whether prism is 'base in or out' or base up or down.' It is
the way rx is needed along w/ reg-lens rx. If eye is a muscle-
pull or a wanderer = 2 diff. situations. Say I need to put 3D
in a vertical type curve of a rx, if it's there 1st prism rx,
I might try a 3 base-up 1 lens. Or I have option of doing 1 +
1/2 up in rt & 1+1/2 down in left to create soft convergence.
In horizontal, it's easier. If prism was 4, I'd split 2 & 2.
Yes, I think it should be split for comfort. I hope they are
giving you discount &/or returning previous lenses you paid
for. Always make request for old rx to be returned & then save.
You can put them in a back-up pair later as spare. Are they
glass or plastic lens? Clear or tinted? And who cares if Dr
doesn't like you having script. They are afraid you'll take it
elsewhere later & get a better cost. Get old & new scripts.
Need a break. Talk later.
She would have to have a FSH+LH blood-ck to see. Some women
have started menapause abt 40 & then it stops. Then 5 yrs later,
can come back as peri-menapause that resembles some symptoms.
Stress hormones can affect CSF 'spinal fluid pressure'. If she
has hypertension from heart or other problems, the CSF can make
too much off/on & cause what some can describe as head prssr.
I've heard `flushing'. I asked someone what that meant to them.
1 said feeling of warm prssr, other said like a toilet was
pushing too much water prssr till it stopped. I don't know what
it means in NZ or w/ Mom. Hypertension is just an idea that's
easier to dx. There's also sitting hypertension from CSF build-
up & then a rush to head ocurrs. Prssr here is best at 120/80.
If daily #'s are aprx 140/90, meds are needed. They widen the
arteries/vessels & control CSF. If excess vessels fluid is keep-
ing BP up, a diuretic is added. CSF is made 3-4xDay evryday.
Just my thought. Get her to describe more clearly or ck BP.
As for you, wish I could send you some of my brain to explain
better. Don't know how NZ wks. w/ refractions but think it's
close to ours. When you mentioned 5 D-prism, didn't want to get
you more confused since I don't know full power of lenses &
whether prism is 'base in or out' or base up or down.' It is
the way rx is needed along w/ reg-lens rx. If eye is a muscle-
pull or a wanderer = 2 diff. situations. Say I need to put 3D
in a vertical type curve of a rx, if it's there 1st prism rx,
I might try a 3 base-up 1 lens. Or I have option of doing 1 +
1/2 up in rt & 1+1/2 down in left to create soft convergence.
In horizontal, it's easier. If prism was 4, I'd split 2 & 2.
Yes, I think it should be split for comfort. I hope they are
giving you discount &/or returning previous lenses you paid
for. Always make request for old rx to be returned & then save.
You can put them in a back-up pair later as spare. Are they
glass or plastic lens? Clear or tinted? And who cares if Dr
doesn't like you having script. They are afraid you'll take it
elsewhere later & get a better cost. Get old & new scripts.
Need a break. Talk later.
In US on difficult rx's, after exam they can do a trial set-up
of combined disks put in an ugly metal holder frame. I thought
the trial kit was universal? It's not a lens they make. They
drop in & you can where in ofc for 1/2 hr while Dr sees next pt.
Sometimes there are 3 disks in one side to equal your rx. Ask
Dr to atleast re-create the rx he has in mind for another quick
look & see if you can focus while in chair for 5 min. That's
why most have trial kit set-ups. It's like a try before buy in
ofc. Many Opticians/Oculists whatever called there that are
independents w/ practice that sell glasses, use these kits. Can
you buy/price out script anywhere or need to stay w/ Dr. ofc?
The hi-prism seems to match cost quoted. It is a very special
grind lens. One of my many careers. Maybe Orthoptist has it.
It saves making multiple lenses. Once I had to grind 6 lenses
over a yr for a guy. I knew problem, alot prism, & found med was
altering eye. I didn't mind the work but he was mad abt costs.
1 lens w/ 5 D can get $500 here. Is Dr planning on changing
both or just prism rx? I thought Orth. appt was coming up soon?
Some day I'm going to research this NHS care in detail. US was
lied to. Told almost all was free care etc. It didn't pass bill
for vote so was shelved for later. Now I know how I'd vote! Too
much pull to muscle may trip hdaches. Knowing your rx would help
me to guild you. I have know idea of amt of astig. or in a + or
- power wk'g w/ prism. Hope you get help soon. Maybe pymt.plan?
of combined disks put in an ugly metal holder frame. I thought
the trial kit was universal? It's not a lens they make. They
drop in & you can where in ofc for 1/2 hr while Dr sees next pt.
Sometimes there are 3 disks in one side to equal your rx. Ask
Dr to atleast re-create the rx he has in mind for another quick
look & see if you can focus while in chair for 5 min. That's
why most have trial kit set-ups. It's like a try before buy in
ofc. Many Opticians/Oculists whatever called there that are
independents w/ practice that sell glasses, use these kits. Can
you buy/price out script anywhere or need to stay w/ Dr. ofc?
The hi-prism seems to match cost quoted. It is a very special
grind lens. One of my many careers. Maybe Orthoptist has it.
It saves making multiple lenses. Once I had to grind 6 lenses
over a yr for a guy. I knew problem, alot prism, & found med was
altering eye. I didn't mind the work but he was mad abt costs.
1 lens w/ 5 D can get $500 here. Is Dr planning on changing
both or just prism rx? I thought Orth. appt was coming up soon?
Some day I'm going to research this NHS care in detail. US was
lied to. Told almost all was free care etc. It didn't pass bill
for vote so was shelved for later. Now I know how I'd vote! Too
much pull to muscle may trip hdaches. Knowing your rx would help
me to guild you. I have know idea of amt of astig. or in a + or
- power wk'g w/ prism. Hope you get help soon. Maybe pymt.plan?
Hi Demi - Sorry took so long to get back to you. Brother has finally vacated the computer room, but eyes have been bugging me so much, I haven't wanted to look at the screen. Also have to admit I've been in a bad space for a while as I try to get my head round things. Yes I know I should wait for the Orthoptist to advise - it is the best way, but Who knows when I'll get an appointment and my eyes are DRIVING ME CRAZY!!!!!! (Oh please excuse the outburst - not like me at all - usually so controlled.) No really, the lenses will cost $300 and although I really can't afford it, I am so tempted to go do it anyway - even if the Orthoptist has me take them off. The one thing thats kept me sane through all this, is my beloved work - I'm finding my eyes are had it by 10am this week and I struggle to keep working. Nothing really helps - even popped an Imitrex but no relief.Computer screen is horrible - even on the dullest setting.
Sorry I'm ranting. I guess I've just had enough.
I will keep the same frames - can't afford others anyway. Never did have a trial lense - not sure if you can do that here - they certainly didn't offer it, but then I doubt they would anyway. I'll ask about it. Neuro says no nystagmus, but I'm not so sure - having trouble focusing with left eye when covering or closing right - which I do quite alot at the moment. Don't think he did much of a test - told me to follow his finger & I had to shut my eyes as he moved it way too fast for me, so not sure how he saw that it was OK.
Better go rest eyes.
As always, thankyou Demi - you've been a wonderful spport during this crazy time and it is hugely appreciated.
Sorry I'm ranting. I guess I've just had enough.
I will keep the same frames - can't afford others anyway. Never did have a trial lense - not sure if you can do that here - they certainly didn't offer it, but then I doubt they would anyway. I'll ask about it. Neuro says no nystagmus, but I'm not so sure - having trouble focusing with left eye when covering or closing right - which I do quite alot at the moment. Don't think he did much of a test - told me to follow his finger & I had to shut my eyes as he moved it way too fast for me, so not sure how he saw that it was OK.
Better go rest eyes.
As always, thankyou Demi - you've been a wonderful spport during this crazy time and it is hugely appreciated.
Sorry appt went very wrong. Wouldn't have mattered if you did
have my pre-notes. I'm glad we have the reg-ins. system & not
NHS. They still try to bring it up at voting time off/on. If I'm
paying, that gives me the right to say my stuff! How many times have you seen the Dr wash his hands from the last patient? They
know their spreading germs from the last. I always ask before they can touch me. I joke & say: 'Are we using clean hands or gloves today?' Somehow they think while washing & then listen to me while drying. I'm polite but I like clean hands & it is a
trick I found wk'd sometimes. Hope you use the same frame I suggested & request old Rx back ALWAYS. Get copies of scripts to compare #'s. You don't have to understand what they mean, just the part where it went up or down. If you travel, no fuss
replacing w/ a copy. As for waiting to get worse symptoms, the
Dr is a jerk & his brain was probably on dinner! This is so
depressing to hear but the norm I guess. You take time to get
showered/dressed/drive/wait. If he ch'd nystagmus, atleast that was time. Did he have opinion on new lens? Still say not MS but
you can always lesson Neurontin over few days & stop to see if
glasses lesson hdaches. If not, ask to do the trial lens set
again & then decide. Hope they'll comply. Just say want to be
sure. I'm thinking orthoptist is worth going to before getting
since they will be one to one w/ you & may pick up something &
suggestion would help decide. They should notice triggers that
cause reflexes by certain clinical observation. Talk later.
have my pre-notes. I'm glad we have the reg-ins. system & not
NHS. They still try to bring it up at voting time off/on. If I'm
paying, that gives me the right to say my stuff! How many times have you seen the Dr wash his hands from the last patient? They
know their spreading germs from the last. I always ask before they can touch me. I joke & say: 'Are we using clean hands or gloves today?' Somehow they think while washing & then listen to me while drying. I'm polite but I like clean hands & it is a
trick I found wk'd sometimes. Hope you use the same frame I suggested & request old Rx back ALWAYS. Get copies of scripts to compare #'s. You don't have to understand what they mean, just the part where it went up or down. If you travel, no fuss
replacing w/ a copy. As for waiting to get worse symptoms, the
Dr is a jerk & his brain was probably on dinner! This is so
depressing to hear but the norm I guess. You take time to get
showered/dressed/drive/wait. If he ch'd nystagmus, atleast that was time. Did he have opinion on new lens? Still say not MS but
you can always lesson Neurontin over few days & stop to see if
glasses lesson hdaches. If not, ask to do the trial lens set
again & then decide. Hope they'll comply. Just say want to be
sure. I'm thinking orthoptist is worth going to before getting
since they will be one to one w/ you & may pick up something &
suggestion would help decide. They should notice triggers that
cause reflexes by certain clinical observation. Talk later.
Back again. This time I wrote a couple of pages of medical history to give the neuro a general overview - also wrote stuff about response to meds because I always seem to be unwell on the days that aAI see him & always come away with much unsaid. He asked about meds - I told him about Neurontin - clear head, but little else. Think he was a little taken aback that I was'nt singing from the rooftops about the clear head - I'd got past that by then - yeah cool, but dissapointed no pain relief. He said give it more time - early days yet (3.5 weeks so far). He asked me to ring him in 4 weeks, then made it obvious the appntmnt was over. I said hold on - I've got this stuff I wrote. He read it, said hmmmmm, asked what head rolling was!!!!! then put it on my file. I asked what about pain management? I'm really struggling to cope. He said wait and see what the neurontin does. And then he said "we can't do anything until you develope new symptoms Sheila".
I just stared at him - He was standing up I guess, so I felt I had to leave. I would love to have asked him to explain himself. What I think he means, is that he is limited by the NHS. I'm being treated as an outpatient and so he is very restricted as to tests he can order, and when they'll be done. However, if I was to have another "attack like last year, I could be hospitalised and he could do alot more for me - you don't have to wait for tests when you're an inpatient, and they don't like to release you until they have a diagnosis.
From the various comments hes made over the times I've seen him, (e.g "I don't have enough to diagnose MS yet") I think hes expecting me to develope MS.
He has refered me to the orthoptist - that should take a few weeks to come through. He checked for nystagmus when I said I was concerned about side effects, but said he couldn't see any problem. Really the eyestain started about four weeks before starting the neurontin, so I doubt its the cause, but maybe isn't helping.
I'd love to get that extra prism now, but feel I should wait for the orthoptist.
Have to go again for now - talk later.
I just stared at him - He was standing up I guess, so I felt I had to leave. I would love to have asked him to explain himself. What I think he means, is that he is limited by the NHS. I'm being treated as an outpatient and so he is very restricted as to tests he can order, and when they'll be done. However, if I was to have another "attack like last year, I could be hospitalised and he could do alot more for me - you don't have to wait for tests when you're an inpatient, and they don't like to release you until they have a diagnosis.
From the various comments hes made over the times I've seen him, (e.g "I don't have enough to diagnose MS yet") I think hes expecting me to develope MS.
He has refered me to the orthoptist - that should take a few weeks to come through. He checked for nystagmus when I said I was concerned about side effects, but said he couldn't see any problem. Really the eyestain started about four weeks before starting the neurontin, so I doubt its the cause, but maybe isn't helping.
I'd love to get that extra prism now, but feel I should wait for the orthoptist.
Have to go again for now - talk later.
Oh Demi...... So much info and so much appreciated, but I really don't know where to go next! I did'nt get to see the post before the appointment unfortunately - my brother is staying at the moment - in the computer room, and I have hardly been able to get near it.
It was a tough Neuro apptmnt this time - I had the last one of the day - he was running behind, and was expecting it to be brief - hows the meds? Good - I'll write you another script.
Oh blast - my bro wants to go to bed!!!!! I'll have to try again tomorrow - have to go right now - talk later.
It was a tough Neuro apptmnt this time - I had the last one of the day - he was running behind, and was expecting it to be brief - hows the meds? Good - I'll write you another script.
Oh blast - my bro wants to go to bed!!!!! I'll have to try again tomorrow - have to go right now - talk later.
We're on different zones (maybe 12hrs+ you're ahead). Didn't see
post till late last night & wrote this really long answer & hit
send. It was deleted! Some odd stuff here. I noticed pre-post
even got posted twice. Too late to stay up & remember so doing a
fast try before your poss. appt. Talk to Neuro abot the exam. I
don't think O.D. & Neuro are considering big picture. You are
using 3 rx's. Change internal & it may trip other functions. In
your case, the glasses & the muscle pull. 2D is alot but not for
your unique problem. 4-5D is really alot & maybe the 4 is needed
except you were tested w/ meds in your system so exam may
compensated. The test lens wk'd great since it was for a short
time in ofc. I find it hard to believe (but who knows), if you
could tolerate ALL day pull. I doubt you'll give up Imitrex
since you know results wk. That DOES alter BP & do visual-
disturbance changes in many. It wks direct in brain neurons.
The Neurontin is known to have a main side effect of dbl-blurred
vision/limb swellig/hdache trigger/muscle coordination or weaken
small muscles. Not all at once but here/there. The 'N' may be
causing the optic fluid to change & muscle spasm. This can trip
eye tension/hdache/& add extra lens power. I'd suggest always
using the same frame/only change rx. Later you can switch back
if need to. Not familiar w/ push-up but it's to tighten the eye
muscle for less prism. Check net & I'm sure there are others
that are easier w/ less strain. 5 D's may be answer but seldom
do you use eary on. You did good w/ 2. Maybe the 4. Both Dr's
need to be reminded what meds you're staying on. Maybe quick
mention of 'I know both affect the eye'. Maybe think abt the
fact that you're now poss. use to 'N' & may need higher & more
as you use. The 4D then would may be too much. Ask Neuro if
there is another rx for skeletal pain that you can use per-need
that deals w/ just the pain to try & if so, how to go off 'N'.
A stronge relaxant could trip eye to spasm, so YOU can control
the testing of dose for pain etc. The exam was stretching the
eye focusing + maybe the 'N' tripped a spasm. 'N' actually wks
in the spine fibers first & msges up to brain. That's why some
got pain relief below skull for a short time & is used off
label besides for seizures. Imitrex starts in the brain. It
will eventually give you muscle relief. Only you can know by
the feedback. There is a 'N' forum on net I've read. Many sound
like they loved it 1st 6mo. & then zip. To get off then, you
buy more to tirate dwn or seizure. It really is a drug that is
like a craving if you get on it for life because it wks. You
keep needing more dose though. There are lot's others to try &
cheaper. Need to get this sent. Write me later. 'Maybe print
this & read at ofc.'
post till late last night & wrote this really long answer & hit
send. It was deleted! Some odd stuff here. I noticed pre-post
even got posted twice. Too late to stay up & remember so doing a
fast try before your poss. appt. Talk to Neuro abot the exam. I
don't think O.D. & Neuro are considering big picture. You are
using 3 rx's. Change internal & it may trip other functions. In
your case, the glasses & the muscle pull. 2D is alot but not for
your unique problem. 4-5D is really alot & maybe the 4 is needed
except you were tested w/ meds in your system so exam may
compensated. The test lens wk'd great since it was for a short
time in ofc. I find it hard to believe (but who knows), if you
could tolerate ALL day pull. I doubt you'll give up Imitrex
since you know results wk. That DOES alter BP & do visual-
disturbance changes in many. It wks direct in brain neurons.
The Neurontin is known to have a main side effect of dbl-blurred
vision/limb swellig/hdache trigger/muscle coordination or weaken
small muscles. Not all at once but here/there. The 'N' may be
causing the optic fluid to change & muscle spasm. This can trip
eye tension/hdache/& add extra lens power. I'd suggest always
using the same frame/only change rx. Later you can switch back
if need to. Not familiar w/ push-up but it's to tighten the eye
muscle for less prism. Check net & I'm sure there are others
that are easier w/ less strain. 5 D's may be answer but seldom
do you use eary on. You did good w/ 2. Maybe the 4. Both Dr's
need to be reminded what meds you're staying on. Maybe quick
mention of 'I know both affect the eye'. Maybe think abt the
fact that you're now poss. use to 'N' & may need higher & more
as you use. The 4D then would may be too much. Ask Neuro if
there is another rx for skeletal pain that you can use per-need
that deals w/ just the pain to try & if so, how to go off 'N'.
A stronge relaxant could trip eye to spasm, so YOU can control
the testing of dose for pain etc. The exam was stretching the
eye focusing + maybe the 'N' tripped a spasm. 'N' actually wks
in the spine fibers first & msges up to brain. That's why some
got pain relief below skull for a short time & is used off
label besides for seizures. Imitrex starts in the brain. It
will eventually give you muscle relief. Only you can know by
the feedback. There is a 'N' forum on net I've read. Many sound
like they loved it 1st 6mo. & then zip. To get off then, you
buy more to tirate dwn or seizure. It really is a drug that is
like a craving if you get on it for life because it wks. You
keep needing more dose though. There are lot's others to try &
cheaper. Need to get this sent. Write me later. 'Maybe print
this & read at ofc.'
Hi Demi - glad I caught your post. Know what you mean about the bizarr Q&As. Sounds like charcoal is a great idea for you - I love it - as you say - very forgiving and for me, I get to see results quicker - my painting style is quite painstaking, but I've certainly had to loosen up a bit since this illness struck - which is a good thing as its lead me in new, exciting directions.
I saw an optometrist on friday - couldn't wait for Orthoptist - I will be seeing Neuro on thursday this week, and it'll take a while for the referal to go through I'd imagine. Eyes were driving me crazy, so decided its worth the money. Well - you know how I'd thought I'd got better? - He said "yes, they've changed - they're worse. Great! He did a pretty thorough exam which was a bit hard on my eyes & I had to tell him to stop a few times to let my eye rest. Afterwards I felt very dizzy and the following 2 days were hell - not even the imitrex injections helped - the pain around my eyes (mostly prism eye) was unbareable. Today I am still getting over it.
Is this a normal reaction to an eye exam? - didn't happen last time.
His recommendation is to do pen push-ups for three weeks to see if it helps, if no change - stronger prism. Turns out I have 2 Diopters right now, and he would put in 4-5 diopters if needed.
I'm not keen on the exercises - tried them today and they brought back the dizzy feeling after just 3.
Would love to just go ahead and get that prism right now - it felt so good when he put it in front of me to try, but I think I need to at least talk to neuro first.
What would you do? I feel really lost right now.
Neurontin doesn't appear to be doing the expected things (pain control & migraine prevention) but my head often appears to be clear - the fog seems to have lifted somehow - which is huge in itself as I have not felt this kind of clarity for many years - even lasted for the whole of thursday. this started only last week, so who knows if it will stay, and will it be enough of a result to justify continuing to take it? As I guess I'll be needing something else to control the muscle pain which has not let up really.
Well, better go sort out dinner - grreat to hear from you demi
:-)
I saw an optometrist on friday - couldn't wait for Orthoptist - I will be seeing Neuro on thursday this week, and it'll take a while for the referal to go through I'd imagine. Eyes were driving me crazy, so decided its worth the money. Well - you know how I'd thought I'd got better? - He said "yes, they've changed - they're worse. Great! He did a pretty thorough exam which was a bit hard on my eyes & I had to tell him to stop a few times to let my eye rest. Afterwards I felt very dizzy and the following 2 days were hell - not even the imitrex injections helped - the pain around my eyes (mostly prism eye) was unbareable. Today I am still getting over it.
Is this a normal reaction to an eye exam? - didn't happen last time.
His recommendation is to do pen push-ups for three weeks to see if it helps, if no change - stronger prism. Turns out I have 2 Diopters right now, and he would put in 4-5 diopters if needed.
I'm not keen on the exercises - tried them today and they brought back the dizzy feeling after just 3.
Would love to just go ahead and get that prism right now - it felt so good when he put it in front of me to try, but I think I need to at least talk to neuro first.
What would you do? I feel really lost right now.
Neurontin doesn't appear to be doing the expected things (pain control & migraine prevention) but my head often appears to be clear - the fog seems to have lifted somehow - which is huge in itself as I have not felt this kind of clarity for many years - even lasted for the whole of thursday. this started only last week, so who knows if it will stay, and will it be enough of a result to justify continuing to take it? As I guess I'll be needing something else to control the muscle pain which has not let up really.
Well, better go sort out dinner - grreat to hear from you demi
:-)
Thank you for thinking of me. As you have seen, I'm back off/on
forum again. I'm human & when some get combative, best to take
a break. August was especially an 'everything going wrong month'
& I still answer a few. As awful as it sounds, I get some good
grins out of some bizarre posts/answers. My vagal response
almost kicks in. (A little fainting spell). Just a joke. I've
been w/ the forums since the early 90's & never posted a
thread once. Although I trust my brain so who would I ask. I
have a problem that I deal w/ like others. I did go back to
painting but a hand tremor isn't great for that. I've been
playing w/ charcoal sketching & found it's much more forgiving.
The tremor works good for smudging! Let me know how things are
going w/ Orthoptist. Control eyes & that should lesson your
headaches. Also did a little research, & found that Imitrex
seems to be the Rx of choice for results. Got the info direct
from some I know that have suffered for years. They use pills
between since they hate injection. Talk later.
forum again. I'm human & when some get combative, best to take
a break. August was especially an 'everything going wrong month'
& I still answer a few. As awful as it sounds, I get some good
grins out of some bizarre posts/answers. My vagal response
almost kicks in. (A little fainting spell). Just a joke. I've
been w/ the forums since the early 90's & never posted a
thread once. Although I trust my brain so who would I ask. I
have a problem that I deal w/ like others. I did go back to
painting but a hand tremor isn't great for that. I've been
playing w/ charcoal sketching & found it's much more forgiving.
The tremor works good for smudging! Let me know how things are
going w/ Orthoptist. Control eyes & that should lesson your
headaches. Also did a little research, & found that Imitrex
seems to be the Rx of choice for results. Got the info direct
from some I know that have suffered for years. They use pills
between since they hate injection. Talk later.
Thank you for thinking of me. As you have seen, I'm back off/on
forum again. I'm human & when some get combative, best to take
a break. August was especially an 'everything going wrong month'
& I still answer a few. As awful as it sounds, I get some good
grins out of some bizarre posts/answers. My vagal response
almost kicks in. (A little fainting spell). Just a joke. I've
been w/ the forums since the early 90's & never posted a
thread once. Although I trust my brain so who would I ask. I
have a problem that I deal w/ like others. I did go back to
painting but a hand tremor isn't great for that. I've been
playing w/ charcoal sketching & found it's much more forgiving.
The tremor works good for smudging! Let me know how things are
going w/ Orthoptist. Control eyes & that should lesson your
headaches. Also did a little research, & found that Imitrex
seems to be the Rx of choice for results. Got the info direct
from some I know that have suffered for years. They use pills
between since they hate injection. Talk later.
forum again. I'm human & when some get combative, best to take
a break. August was especially an 'everything going wrong month'
& I still answer a few. As awful as it sounds, I get some good
grins out of some bizarre posts/answers. My vagal response
almost kicks in. (A little fainting spell). Just a joke. I've
been w/ the forums since the early 90's & never posted a
thread once. Although I trust my brain so who would I ask. I
have a problem that I deal w/ like others. I did go back to
painting but a hand tremor isn't great for that. I've been
playing w/ charcoal sketching & found it's much more forgiving.
The tremor works good for smudging! Let me know how things are
going w/ Orthoptist. Control eyes & that should lesson your
headaches. Also did a little research, & found that Imitrex
seems to be the Rx of choice for results. Got the info direct
from some I know that have suffered for years. They use pills
between since they hate injection. Talk later.
Wow - Thank you so much!!!!! You were so good to even bother reading the load of stuff I wrote - Its just fantastic to get more info on why these things happen - I'm the kinda girl who just has to know why - drove my parents crazy!. I had the kind of parents who just went with the flow - never really checked out any of my weird goings on - just thought I'd grow out of it. And my dad was a child psycologist! Unfortunately, he was also unable to accept that his children could be anything less than perfect. Didn't even get speech therapy til I was 12! Spent most of my childhood with one eye closed - if open, one of them would wonder off - which is what happens now alot in spite of the prism - wasn't doing it much when first got glasses, so thats another reason to suspect Rx. Never knew it all could be so complicated.
I too get worse with wind & cold - we got a polar blast the other day (winter here) and I was in agony. Strangely, a shot of Imitrex did wonders- it wasn't a migraine - as I said, both arms were swolen and spine (not head) hurt like hell - don't know why it works for that, but it does.
If I were to get a lumbar puncture, I would certainly be checking out who was doing it - my mother had one to test for meningitis - registrar was called away and they let a young pimply guy do it - the result was a 6 week headache from hell - he got blood in the sample so they couldn't use it and her spinal fluid leaked everywhere after they moved her way too early - had to be flown to big city for loads of horrid tests instead.
How are you anyway - did you take up painting again now that you spend less time on this site? Sad that you've been put off, but also understandable. Still, a great loss for many I should think - I often read a post & think 'this is one for Demi - hope she/he sees it'. I read posts and think wow - you've been through so much - no wonder your knowlege is so vast.
Cheers, xx
I too get worse with wind & cold - we got a polar blast the other day (winter here) and I was in agony. Strangely, a shot of Imitrex did wonders- it wasn't a migraine - as I said, both arms were swolen and spine (not head) hurt like hell - don't know why it works for that, but it does.
If I were to get a lumbar puncture, I would certainly be checking out who was doing it - my mother had one to test for meningitis - registrar was called away and they let a young pimply guy do it - the result was a 6 week headache from hell - he got blood in the sample so they couldn't use it and her spinal fluid leaked everywhere after they moved her way too early - had to be flown to big city for loads of horrid tests instead.
How are you anyway - did you take up painting again now that you spend less time on this site? Sad that you've been put off, but also understandable. Still, a great loss for many I should think - I often read a post & think 'this is one for Demi - hope she/he sees it'. I read posts and think wow - you've been through so much - no wonder your knowlege is so vast.
Cheers, xx
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.
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