Light sensitivity

[chattabob]

Hi all,

I've been reading up on another post from 2006 http://www.dryeyezone.com/talk/showt...ht-sensitivity

Regarding light sensitivity and sinus's.

I've been trying to sort out my terrible sensitivity to light for the last 10 years or so now but at least I've found this forum with people who can relate to the extreme pain this causes if not finding a solution.

In the initial stages I tried eye drops, a cream to put on the lids of my eyes, I had an MRI scan and saw the eye specialist who advised this was Blepharitise, I think he just gave me any diagnosis as he didnt know what it was in fact he said he couldnt find anything wrong but still gave me a diagnosis??

My GP also diagnosed me with a slightly overactive thyroid but again after treatment I felt absolutely no change at all.

My eyes are so sensitive to light (mainly daylight/sunlight) I cant stand fluorescent lights, sunglight and the most brutal one is sunlight bouncing off a wet surface after its rained, the pain is terrible.. to the point where I cannot keep my eyes open and have to close them to relieve the pain, they heavily water. I cant describe the pain its just that bad, I feel it either in my eye or at the back of my eyes.


This all started when I was 17... I worked in a spice factory so not sure If I could have got an infection as I was dealing with out of date products aswell as new ones, a lot of it did get up my nose though. I had also just passed my driving test and didnt want to have my license taken off me.

Here are some of my symptoms:

I constantly cough and clear my throat although I have always tried to disguise it by turning it into a light cough so I cant be heard doing it.

I'm not sure if my head is stuffy but I've always said it feels like my head needs more oxygen if that makes sense

My eyes are always heavy and look tired even though I get plenty of sleep

I also have dark circles under my eyes

I've also had sleep issues since this all started where I never feel refreshed when I wake up so I started to beleive my sensitive eyes were down to sleep issues so I persued the sleep avenue instead. Not wanting to wait I visited a private practice called Harley street who said my sinus's were blocked. I'm really not sure how true this is because the day before I was also told my airways were blocked by a different consultant, it was also a very sales kind of enviroment so I decided not to go ahead with it as it was very very expensive.

Is there any other way for me to tell if my sinus's are blocked? Is there a sure telling sign thst I am missing as my GP has so far not picked up on this posibility

[littlemermaid]

Hi chattabob and welcome. You certainly sound as if you are in the right place here with us. I'm very sorry you have been suffering with this for so long without a proper diagnosis but, as you know, it is the same for many people here on this journey, trying different doctors and tests. Let's hope medical science progresses to better understanding of the various causes of eye inflammation. Certainly there has been great progress in the UK over the last 2 years on recognising and attending to dry eye conditions in the hospital eye clinics.

Are you still getting regular checks for thyroid levels? I know it is difficult for GPs to manage subclinical levels but they are getting better at making the referral to endocrinologists. It is important that we know our entitlements in the NHS these days - search NHS thyroid - to check CKS Clinical Guidelines and NHS Choices advice. Then you will know whether you need to try another GP to get referral if yours is not up to date.

Did ENT swab your nose or throat for bacterial or fungal infection? 2 docs are saying you have blocked sinuses, by which they presumably mean inflammation, and I think this is what you are wondering. Do you have any other symptoms which might get you an NHS ENT referral? An ENT examination would not necessarily mean a swab unless they saw other symptoms, as you say, but it might put your mind at rest to get advice. Or they may recognise allergy symptoms.

My daughter has photophobia and some distance vision deterioration during eye inflammation flareups and it is a warning for us that she is entering a spiral of worsening dry surface and inflammation. But there is improvement with blepharitis treatment (clean eyelid margins, unpreserved tear substitute drops, warm compress, gentle massage of eyelid glands, and, unfortunately for her, doses of steroids and antibacterials). But you need regular ophthalmology appointments for this serious photophobia for treatment and monitoring.

Any optometrist could refer you to the hospital eye clinic NHS, better than GPs on eye assessment. Painful photophobia definitely qualifies you for this referral. It's important to know optometrists are very varied in their skills and choose one who is current on the conditions, and will refer, without just trying to pressure-sell eyedrops. And also check your vision and hopefully notice any other problems. Unfortunately GPs are mostly not good on eyes or subclinical thyroid. If the local hospital service is not good, you need to attend the regional teaching hospital eye clinic, at least for a proper assessment of why the photophobia is so bad - blepharitis, tear film, surface damage. Also if they think it's thyroid, you would get a good referral within the hospital.

http://www.dryeyezone.com/talk/showt...octor-who-will
Certainly there is no need to go to Harley Street in London unless you are rich or insured because the same cornea & external disease specialists are available in their London NHS hospital practices, or half the price in private practice elsewhere where the rates are mostly regulated by the insurance companies. Moorfields is, of course, the famous NHS eye hospital (or Moorfields Private) - we used them for diagnosis and good advice on latest treatments, but continued treatment and monitoring locally and in a teaching hospital nearer where we live. You can also see your regional hospital cornea & external disease specialist in private practice if you really can't get an NHS referral.

This is our experience of trying to get help with chronic dry eye and inflammation symptoms, but it has meant finding good eye doctors to get some regular follow-up and access to the latest eyedrops and advice. What do you think? Do you think you will be able to get a proper eye assessment and access to the hospital eye clinics?

[chattabob]

Hi,

Thanks for the reply,

I generaly do not have an issue getting refferals my problem is being diagnosed to the point where I get so upset I just give up on finding out what is wrong with me and then start the process again a few years later.

When this all started I did have other symptoms but was treated seperatly for them, I use to get really hot in my face along my cheek bones.. again spent to long getting this sorted out with various creams.

My thyroid levels are fine and that was around 7 years ago and has been fine ever since, I honestly did not see any point in treatment as I felt no different what so ever after treatment with my fatigue or my eyes my GP and endocrinologist didnt feel this was affecting my sensitivity to light.

I've not seen an ENT as of yet and the only reason I'm thinking about this problem again is because my sleep doctor mentioned I sounded nasally which made me think of what Harley street said, they put something up both my nostills seperatly and said they were blocked. You just dont know what to beleive when a huge amount of money is going to be made off you.

So far I've been treated for :

Overactive thyroid (No changes happened)

Blepharitis again no difference.

Anxiety (No difference)

I'm at a complete loss and I really cannot cope with "we cannot find anything wrong with you" because it takes me a long time to deal with stuff like that... coming to terms with tyring to hide the pain and thinking I have to live with this for the rest of my life (I just cannot do that)

Is there a sure sign way to know this could be the issue?

I dont have a runny nose or yellow mucas however, I do have some kind of flem running down the back of my throat... I can feel it thats why I keep subtly coughing to clear it.

Is there such a thing as a sterotypical sufferer?

[littlemermaid]

Dear chattabob, I'm so sorry I don't have experience with sinuses but hopefully someone does. Since this in Patients & Pros you might get a kind doc.

My husband, brother and other daughter often have blocked sinuses due to allergy due to the way we live here, central heating, dust in carpets and books, changes in the weather, pollution, which clear after a few days in the Mediterranean where the floors are tiled and the air is fresh. The sun helps us a lot too. Docs say many people in the UK are deficient in vit D3. My brother in particular has some mild meibom insufficiency, photophobia, overtearing, red eye in a/c, as he gets older, mid-40s, but this is managed by improving his diet, reducing stress and exercise. Without management, these things can spiral into worsening, particularly using eyedrops with preservatives.

My daughter's photophobia is very much improved today after a short course of steroid drops and antibacterial ointment and gentle warm flannel compress (too inflamed for hot compress). This shows how controlling the eye surface inflammation and working on improving what meibom she has can spiral the eye surface and tear film back to a healthier state. I wonder if a good surface disorder ophthalmologist could help you manage this condition and improve your comfort.

However, were the burning cheeks diagnosed as rosacea hypersensitivity, and treated as rosacea? Rosacea-type sensitivity causes meibom insufficiencies and inflammation pathways like this. You have done very well to find doctors to help you over the years, I think. This is a stressful and emotional journey. We are still doctor-shopping for dermatologists in particular as I am finding it difficult to get someone who knows how to manage this face hypersensitivity causing the eye problems. As far as we can discover, she is sensitive to all the bathroom products we have ever tried, the worst being shampoos, and inflammatory foods. Also appears to have lipid/hormonal imbalances. I wonder if, therefore, this is more of an immune system regulation dysfunction. Does this sound like your aetiology?

My friend has some periods of depression, dry skin, dry eyes, brain fog, when her thyroid levels need adjusting. She does not realise herself when the changes are happening because she has needed no intervention for most of her life and did not see a doc for 14y, but now likes some monitoring and control.

I am wondering if an ophthalmologist could assess more specifically whether you have meibom insufficiencies? This would have reduced the protection of your tear film and led to some corneal changes, if, like my daughter, you have allergy/hypersensitivity either in the dermatology or maybe sinuses. Blepharitis is not sufficient diagnosis these days. We want to know why it's happening. Do you ever have red eyes or red-rimmed eyes?

Please keep chatting here because someone may compare notes with you. Certainly I feel so many people have similar symptoms, maybe stereotypical, but it's bringing about improvement and managing the condition to better comfort using what's on offer that's the key and this is how we try to help each other. Also, I really hope you get response from a Pro

[chattabob]

Thanks little mermaid,

The thing that worries me the most is after exhausting the internet with searches on this I am yet to find a single person who knows what this is or even worse have yet to find a solution to the problem. Most people start off with the serious question and then other chip in with the same problem but say "I dont go out of the house in sunglight now or I dont drive at night when poeple have their car lights on" Absolutely crazy that people have accepted this although, you do get to the point where you have to give up as numerous hopsital, eye specialists, trial and error can only keep you going for so long.

Im vary rarely told what is wrong with me so I cant tell you what the burning cheeks was about I'm afraid I was just glad it was fixed.

The problem I have over the years is I tend to be seen by a noob all the time wether it be my GP or a specialist so I'm not sure how helpful that is or unhelpful.

So... Do I see..

ENT
Sleep specialist
Endocrinologist
opthamologist
neurologist

Or someone else?

[chattabob]

Well... it turns out by GP would rather not send me to an ENT after all as they think they will just say let the sleep clinic run its course first. she was happy to refer me back to the eye speicalist though so I guess thats something

[MaryVa61]

You have some symptoms in common with me. Culprits were thyroid which was becoming hyperactive due to nodules, and hypersensitivities to some preservatives. BAK sensitivity (in my eye drops and nasal sprays) was subtly making my nasal and sinus symptoms worse, as well as my eyes. Finding drops and sprays with no BAK helped a lot. But it took me years, and this group, to figure out that problem even though I had an allergist. Getting rid of products I used on my skin and hair that contained other preservatives I was allergic to also helped my sinus, and most especially my eyes, after skin allergy tests by a dermatologist.

My thyroid nodules are benign and small (GP couldn't feel them) but caused me to be sublcinical hyperthyroid for a couple of years with spells of being hyperthyroid (according to test numbers). Most treatment for hyperthyroid doesn't work except killing part of the thyroid chemically with radioactive iodine or surgically removing part of the thyroid. Anxiety is one of the classic symptoms and for me was the one that made me seek treatment and changed most dramatically after treatment.

I do also still have an undiagnosed disorder which is suspected of being autoimmune or a rare genetic disorder, but so far rheumatologists and geneticists haven't been able to figure it out. But doing the above dramatically helped my eyes. Getting rid of severe eye pain from the hypersensitivities helped my fatigue problem.

I hope you find your answers!

[Ahmed]

chattabob,


Have you seen an eye specialist yet?

Have you tried a 2 week course of anti histamines?

Chattabob, keep pursuing your case and hopeful you will find the right treatment, I wouldnt just accept it at this stage.

Ahmed.

[chattabob]

You have some symptoms in common with me. Culprits were thyroid which was becoming hyperactive due to nodules, and hypersensitivities to some preservatives. BAK sensitivity (in my eye drops and nasal sprays) was subtly making my nasal and sinus symptoms worse, as well as my eyes. Finding drops and sprays with no BAK helped a lot. But it took me years, and this group, to figure out that problem even though I had an allergist. Getting rid of products I used on my skin and hair that contained other preservatives I was allergic to also helped my sinus, and most especially my eyes, after skin allergy tests by a dermatologist.

My thyroid nodules are benign and small (GP couldn't feel them) but caused me to be sublcinical hyperthyroid for a couple of years with spells of being hyperthyroid (according to test numbers). Most treatment for hyperthyroid doesn't work except killing part of the thyroid chemically with radioactive iodine or surgically removing part of the thyroid. Anxiety is one of the classic symptoms and for me was the one that made me seek treatment and changed most dramatically after treatment.

I do also still have an undiagnosed disorder which is suspected of being autoimmune or a rare genetic disorder, but so far rheumatologists and geneticists haven't been able to figure it out. But doing the above dramatically helped my eyes. Getting rid of severe eye pain from the hypersensitivities helped my fatigue problem.

I hope you find your answers!

I really convinced myself when I was diagnosed with an overactive thyroid in 2002 that this was causing my sensitivity to light... needless to say it didnt and the only difference I noticed was that I ate less sugary food and drinks??

If I could get rid of my fatigue and eye sensitivity I would be a happy man as its very difficult to book a holiday in the sun to escape the stress's of life when your eyes are in that much pain

[chattabob]

chattabob,


Have you seen an eye specialist yet?

Have you tried a 2 week course of anti histamines?

Chattabob, keep pursuing your case and hopeful you will find the right treatment, I wouldnt just accept it at this stage.

Ahmed.

Thank Ahmed,

This is the advice I give to others in life but its so hard to take your own advice sometimes, more so when its a long battle ahead.

Not seen the eye specialist yet but I am due to go on the 30th Jan. I chose to go to the same hospital where I am being treated for my sleep issues so its all dealt with in house as it seems hospitals do not like to share patient information with each other

[spmcc]

Hi there,

I'm not a doctor so take everything I write with a grain of salt...

I'm wondering if you've considered seeing an internist (someone who specializes in internal medicine)? I think they are the doctors to see if you have multi-system problems (nose, eyes, skin, thyroid, etc.). They may be able to piece together what seems to be (and may be) separate issues.

Also, just curious, do you use nose spray to "unclog" your sinuses? I ask because it's very easy to get hooked on nose spray (I've been there!). Unfortunately, it ends up creating a vicious cycle of congestion (and may dry the eyes). Just a thought...

Wishing you the best.

[Ahmed]

Thank Ahmed,

This is the advice I give to others in life but its so hard to take your own advice sometimes, more so when its a long battle ahead.

Not seen the eye specialist yet but I am due to go on the 30th Jan. I chose to go to the same hospital where I am being treated for my sleep issues so its all dealt with in house as it seems hospitals do not like to share patient information with each other

Good luck and let us know.

Your medical records are your own, and you can request a copy so that you can go where you like and give them a copy of your notes. They can not refuse to do this in the UK. Im not saying you should go somewhere else, but that they have to give you a copy of your notes if you wanted to go elsewhere.

Ahmed.

[littlemermaid]

Ahmed's right. We get the notes copied by Medical Records department (if they want photocopy money, there's a max charge). If there's any trouble, ask Medico-Legal dept for an application form. Or we have just had them transferred in the past, you have to phone Medical Records to ask where they are centralised, may be in the county store - need hospital number if possible although they can find them on name + date of birth http://www.nhs.uk How do I access my medical records

[chattabob]

Hi there,

I'm not a doctor so take everything I write with a grain of salt...

I'm wondering if you've considered seeing an internist (someone who specializes in internal medicine)? I think they are the doctors to see if you have multi-system problems (nose, eyes, skin, thyroid, etc.). They may be able to piece together what seems to be (and may be) separate issues.

Also, just curious, do you use nose spray to "unclog" your sinuses? I ask because it's very easy to get hooked on nose spray (I've been there!). Unfortunately, it ends up creating a vicious cycle of congestion (and may dry the eyes). Just a thought...

Wishing you the best.

I dont use any sprays, never really have. same as if I get a headache.. very rarely do I take anything for it.

My sinus's do tend to be clogged up at night and first thing in the morning and usually when I get in a hot shower, Im in the habbit now of blowing my nose straight away as soon as I get in the shower (not a light blow of my nose its a proper big blow lol)

it would be amazing if I dealt with one person who could cover everything you mentioned because at the minute it just feels like trial and error.

Is there a sure fire way to know if my sinus's are an issue?

[chattabob]

Oh boy what a long day!

I went to see the eye specialist today and after 3 hours of waiting he calls me in just as everyone else has left including the staff.

He started by asking what the problem was so I told him the pain I get with bright lights to which he replied "Use sunglass's" How rude! I told him there is not way I am wearing sunglass's all the time and even that does not gurantee less pain for me.

I put my chin on that thing and he shined the light in my eye and told me to stop blinking to which I replied I cant help it this is what light does to me. He muttered to himslef I dont know what it is lol

He flipped over my eyelids and said did I have conjunctivitis previously to which I replie no, He again shined the light but this time onto the underside of my eyelids, Oh my god the pain was terrible and I started fighting to move it was that bad.

anyway he said my eyelids were still inflamed from a previous issue (conjunctivitis) and prescribed me with drops.

I really hope he has not tried to fob me off