Keratoconus - Eye Pain - need some thoughts/advice

[alison falshaw]

Hi Folks,

I registered last week as a newbie.

I am at my wits end. Over the past few weeks I have had bad headaches, tiredness together with eye pain, the only way to describe is by saying I feel as though my eye balls are being ripped out. its not constantly severe but is there most of the day and the severity comes and goes. It seems worse whilst at work and night time vision is not great - star shaped headlights and tails etc.I had to leave work early on Friday as the pain and tiredness was so bad I didnt dare drive home in the dark.
It makes me very tired and as though I just want to sleep all the time. I
I called my eye outpatients this morning for advice and the consultant doesnt think that this is associated with my KC and suggested I visit my local GP!! I am not convinced and would like to know if anyone else has suffered or is suffering with these sypmtoms and want remedies they used.
I am currently taking around 6 - 8 paracetamol per day which give only mild relieve, the only effective relief is from a codeine based table but as this makes me drowsy I only dare take this at home. I had to leave work
The whole allergy and KC thing is getting me down to be honest.


Any help and advice would be appreciated.

Ali

[timtim]

Hi Alison-

I can relate to your headache problems and eye pain. My left eye is the bad one, and it feels very sore most of the time, and I feel a headache in my brain above that eye almost all of the time (I have a terrible one today ). I even have them while I am sleeping, and wake up with one on most days. I can tell that it is related to my KC, because that eye has such a hard time focusing, that it puts so much stress on my brain. My eyes don't work together well. Lately, I have also noticed that I am feeling dizzy when I walk around. This is really hard, as I get disoriented often, and I'm only 27 years old. I am going in to an eye surgeon on Friday to have him check me out and see what he thinks I can do, so I'm optimistic. I would suggest that you go see whoever you can that might be able to help you (I've been to 4 or 5 eye doctors over the past few years). And I wouldn't be so sure that your KC is not causing your headaches, I am fairly certain that it is what causes mine.

Best of luck and hang in there

[Andrew MacLean]

Alison

By all means go to your GP. it may be that you can get a more effective painkiller on prescription.

Did you go to the ophthalmological casualty department or did you phone them?

Have you been back to your optician to see if there is anything they can do to provide optical correction that may overcome your headaches a bit?

All the best; this is a difficult time for you. You are in our thoughts.

Andrew

[Lynn White]

Ali

This is very hard to sort out without someone seeing you. I think the ophthalmologists opinion may have roots in the possibility that if your KC hasn't changed much in the last few weeks, its unlikely that it is suddenly causing such severe headaches. Usually, headache pain will diminish with the level of pain relief you are taking. If they are not, then they require further investigation as it could be migraine for example.

I do agree that you need to see your GP - but first I would seek an optometric examination (as GP's prefer to eliminate eye related problems before they look at anything else). After seeing both of these professionals, if the consensus is that your KC IS causing the symptoms, then your GP would have better information to give to the ophthalmologist/clinic.

You do sound like you have a complexity of symptoms! Headaches can be due to a variety of reasons all adding together, so I do urge you to go down the route I suggested to at least eliminate other possibilities.

[sweetieoftwo]

Hi Alison,

Can completely sympathise with you as that is how I feel at the moment. Mine is definitely linked to my KC. I have had problems for several weeks and have had to leave the contacts out altogether, which actually doesn't help either because then instead of eye soreness from the lenses I now have headaches from straining and squinting to see, the bright lights aren't helping this and I feel so tired all the time. Think it's sheer exhaustion from everything now being such a struggle. Slept again last night/today for over 13 hours, which is really unlike me!

I do agree though that you should also see a GP, as I know mine is because of changes with taking my lenses out and my brain and head having to try and cope with this new idea! I think if everything was going ok and then suddenly I developed headaches etc I may feel obliged to check out other things first, like diet, stress and general well-being, but I am sure you are right and it is KC related.

Can only wish you luck and hope things get better soon,

Em x

[alison falshaw]

Hi Folks,

Sorrry that I havent replied. I havent logged on as I want to try give me eyes a rest. I will give you an update and answer some of your questions.

I did phone the eye casualty and was advised that they now operate a fast track system ( since he unit has been transferred to James Cook Hospital, the large hospital complex there isnt a separate eye casualty) but a referral for non emergency eye problems have to come through your consulant. I was referred to my consultants secetary who took down my symptoms and called me back about 4 hrs later with the consultants advise to go see GP.

Since diagnosis - apart from the past 6 months - I only had an annual appointment at the corneal clinic with the consultant. But had probably twice yearly appointments at the optomotrists in the same dept. Since being diagnosed my eye care has always been at this unit - I havent visted a high street optician.

I dont think that I have actually been seen by the same consultant in the corneal clinic ..although the appointment letter always says my appointment is with Miss Ellerton...its normally a member of her team. The appointment consisted of the usual checks and a few brief questions about my eyes and told to come back again in 12 months. To be totally honest the headaches have come about in the past 12 months or so, gradually getting worse and have never compleletely associated it with my eyes - as I was told by my GP and ENT consultant that it was sinus/nasal related. Hence I have never mentioned them at the corneal clinic before now.

My appointments with the opticians at the hospital have always been regualr (last year every couple of months) to try and get lenses that fit well, give me good vision without causing eye watering and discomfort. Its only since the opticians kind of give up trying and then passed me back to the corneal clinic for other treatment options that I have learnt more about KC and the other available treatments, mainly thanks to this group. I haven't worn my lenses since the summer of last year.

It was around October that Miss Ellertons team referred me up to Sunderland hospital to discuss intacs and cross linking. I have had one appointment with Mr Bell about corss linking. My left eye is moderate and ok for cross inking but the right eye isnt due to it being so advanced. We discussed intacs but my right cornea maybe too thin. However Mr bell spoken to his colleauge who specialises in intacs, Mr Morgan and he has agreed to see me in Feb.

In the meantime my overall eye care is still with Miss Ellertons team and I have an appointment with them next week.

I have changed address in the past couple of years so my doctors surgery has changed - so hence there is always problems with lack of patient info - although your file maybe with them, the long term history is something you have to give them verbally and over a number of appointments. As I am atopic I am often at the docs and never really see the same doctor,however after Monday I will be doing everything I can to continue through this with the same doc.
The doc has given me a sick note for 2 weeks, advised that I need to take some time off work from constanly focusing intensely at a pc as he believes this is what is causing the headaches. The stress and strain of focusing is causing the severe headaches and pain on and around my eyes! And of course the sinsus problems and stress off worrying about this will all contribute to the headaches. Also said that by taking the time out and focusing the eye less it will tell us if it really is due to eye strain, and if not then he will investigate further. He gave me reassurance that he will help me all he can, prescribed stronger pain killers and told me to avoid ibruofen or nurofen.

I didnt sleep much that night, what where people going to think at work, should I take the time off etc etc. So I decided to go into work early on Tues - even though I shouldnt have - and spoke to my boss's deputy. It really worries me that people will think , whats wrong with her eyes, she is wearing glasses so surely she can see. But what they dont see is that I cant see 20/20 with glasses and I have to squint and strain all day. Anyway they all seem ok with it and told me that my health comes first. Not sure that the Chief Executive Director has the same view though. So that is where I am at the moment two weeks off and an appointment with Miss Ellertons team at my local hospital next week and upto Sunderland hospital in Feb.

Its such a relieve to know that there are people out there who have the same symptoms - the pain above the eyes in the brain, the tiredness etc. I now know that I am not alone and there is help out there from people who know and understand. Thank you to you all for you help and kind thoughts.

Lynn is there anything that I should specifically mention or ask at my appointment at the corneal clinic next week???? As I say I have never mentioned the headaches before - to be honest they have never seem to bothered - just quickly do a reveiw and usher you out - its annoying when you have spent 2 hrs in the waiting room for a 2-3 min appointment!

Ali

[Lynn White]

Hi Alison

Thank you for that more detailed explanation - it does help! What I need to know here is more details about your glasses. You say you haven't been to a High Street opticians and that the opticians in the hospital are dealing with contact lenses. So that leaves me wondering how old your glasses are?

With ongoing symptoms over this length of time, the glasses prescription may be a contributing factor, as KC makes your prescription vary and if you have high astigmatism, and this changes, it will cause shadowing and ghosting which can trigger headaches as your eyes try to focus. You really need this info to give the clinic a full story. I would also suggest writing down in brief what you have said here and give it to the clinic to put in your notes. Saves a lot of time and its always there for others to see when they access your file.

Don't feel guilty about being off. Your GP is being entirely sensible here. Until you ease off using your eyes, the true nature of the headaches can't be fathomed. Actually, as a professional, it amazes me how many people with eye related problems (not just KC) work in jobs that rely on their vision. I suppose that's computers for you!

One other thing, with you being atopic and with staring and squinting at the screen all day, its likely you have dry eyes which can be very painful. Do you use any lubricant drops? If so, which ones?

[alison falshaw]

Hi Lynn,

Pleased the LONG explanation helped!! I dont tell stories briefly!

Ok then. My prescription in my glasses is about 18 months old. My annual prescription check with glasses was around August 207. At that point I considered buying reactolite glasses - was sick of having two pairs of glasses in the summer. The only time I visit a high street opticians is literally armed with my prescription ready to choose some frames. As you can imagine my prescription is a high one, I have always paid for as thin as poss lenses, I have a small frame and hence due to all this, there is limited choice in frame type and shape available and costly - around £300. However I had just decided to buy some when the corneal clinic mentioned surgery and advised me not to proceed with new glasses until after any surgery.

I take your point that the prescription change will be contributing to my headaches - I have thought that in recent weeks. I have halo's when driving at night time and although I can be sensitive to day light, I also need it to see.


I take fexofenadine tablets and optanol eye drops, and other creams for my exzcema.

I am defo going to write some notes ready for my appointment next week, and also will be printing out several notices of the this group and asking for them to be posted around the eye unit. I will also take some to Sunderland Hosptial in Feb.
You never know it may lead to a local group being set up.

Ali

[Lynn White]

OK

It may then be useful to simply get a high street eye exam to see how much your prescription has changed and take that along to the consultation as well. They will be able then to assess whether any changes there could be a factor.

Sounds like you are getting organised anyway!!

[Rob]

HI i am new to this forum and i am so glad i am not the only one experiencing pain hope that doesn`t sound bad but i thought i was losing it i have had keratoconus for 11 years i got to the point where my RGP`s where causing severe pain and with a piggy back it dried my eyes and caused a ulcer so now i am about to recieve a cornea transplant .I also experience severe pain in the eye .It starts in the eyes and kinda feels a lil like a really bad tooth ache then i get kinda spreads from the eyes to the brain and becomes a migraine .I can no longer wear contacts or glasses not that they helped my vision that much anyways .I can also relate to the dizzyness and being disorientated . I think that doctors should spend more time listening to patients and studing the effects on different individuals because everything that is read to me from different forums is most people experience pain . My experiment for a doctor is take a magnifying glass or something that distorts their vision and put it over one eye for atleast an hour or so and walk around and do daily functions (if you only have it in one at the moment ) and see how they pan out for dizzyness and headaches .I have been to 4 eye doctors and 3 specialist and my family doctor never even heard of this disease until he meet me and that was only 3 years ago so that tells me how much info is put out there about this issue . I would like to tell the people who posted here thank you , you have really made my experience dealing with this 100% better .Until this point i thought it was me against the medical field but i now realize i am not alone .. Rob