Light sensitivity

[farmgirl]

Hi Chatabob:

I feel your frustration with not having a diagnosis. I got mine. I am a Sjogren's sufferer. My eyes are just plain dry, at times painful, and always photophobic...period. This will never improve, and could well get worse. I have had to accept that I will have this problem until the day I die.

When all else fails sometimes we just have to get on with our lives. I try to live my life as normally as possible. I live in the tropics in the winter and my favorite activity is to go to the beach. I strap on my dark goggles and put my baseball cap on to block the sun and go out and have fun. I don't care who thinks I look weird I boogie board and have a blast. The drive home is almost impossible as the sun is low and shines in my eyes. I never go alone and whomever I go with will do the driving, I have adapted. At times I wear sunglasses on the sunglasses (especially driving) and that helps - a lot. I constantly put in drops (preservative free usually) and my Drs tell me my corneas are OK. If I am having a bad day I don't do the things that irritate them like being on the computer for a long time or reading. I have not bought a Kindle as the glare would be too much for me. I stick to paperback books, I stay in the shade and wear hats if I have to walk in the sun. With goggles and a baseball cap I can still manage my convertible.

This is a minor setback, my life is good, I have much to be thankful for....stay positive...Farmgirl

[chattabob]

Hi Chatabob:

I feel your frustration with not having a diagnosis. I got mine. I am a Sjogren's sufferer. My eyes are just plain dry, at times painful, and always photophobic...period. This will never improve, and could well get worse. I have had to accept that I will have this problem until the day I die.

When all else fails sometimes we just have to get on with our lives. I try to live my life as normally as possible. I live in the tropics in the winter and my favorite activity is to go to the beach. I strap on my dark goggles and put my baseball cap on to block the sun and go out and have fun. I don't care who thinks I look weird I boogie board and have a blast. The drive home is almost impossible as the sun is low and shines in my eyes. I never go alone and whomever I go with will do the driving, I have adapted. At times I wear sunglasses on the sunglasses (especially driving) and that helps - a lot. I constantly put in drops (preservative free usually) and my Drs tell me my corneas are OK. If I am having a bad day I don't do the things that irritate them like being on the computer for a long time or reading. I have not bought a Kindle as the glare would be too much for me. I stick to paperback books, I stay in the shade and wear hats if I have to walk in the sun. With goggles and a baseball cap I can still manage my convertible.

This is a minor setback, my life is good, I have much to be thankful for....stay positive...Farmgirl

Ahh I wish I could share your enthusiasm but whilst I go undiagnosed I just cannot accept I have this for life. I just want to be normal again

[chattabob]

Chatta, our friend ~ this is so not the end of the line. Your eyeball guys sound very kind and well meaning but despite their amazing skills in what they do best, and much as we love them, ophth are not the best at diagnosing systemic conditions through the eyes, if this is what you have. Even if they suspect things, they sometimes feel a bit daft referring or even saying to another doc what they are wondering about. They want to stick to fixing the eye part and someone else to do the rest. The problem is who is going to think about this for us because we do not have many internal medicine specialists in UK. It is a very great ophth indeed who thinks and reads about diagnosing unusual conditions through signs in the eye.

So photophobia has many 'differential diagnoses' and you can carry on trawling through eg http://emedicine.medscape.com/ and other diagnosis sites.

Epilepsy would be a neuro - good idea, I didn't know there's a photophobia type. A neuro-ophth is also supposed to know about this type of eye pain although one who knows lots about surface pain is a rare bird.

You were saying you had no change at all to the photophobia on A Big Daily Dose of steroid onto the eye surface (wasn't it 3/day)? Do you have a lack of tear film? Are your eyes definitely completely shut while you sleep (this might explain tired and dry)? maybe try an eye mask or tape to see if it helps?

Do you want to post up symptoms again? It might ring a bell for someone (we're in the Pro section here). You're so right to post. Hope you get input.

"They want to stick to fixing the eye part and someone else to do the rest" I get that completely and it shows when you see the specialist, if it's not blepharitis, tear film or a list of 5 or 6 things they are looking for they are not interested and are outside of their comfort zone.

They tested my tears whilt I was there and they were fine, stuck some paper stips in my eyes and plenty of tears.

My eyes are shut when I sleep.. I'm pretty sure of that but I do wear a sleeping mask anyway to block out all the light just to try and give them a proper rest with no light at all

Twice per day were my steroids aswell as 4 times a day with extra tears, followed by scrubbing my lids the following visit to the oph.

I'm not sure if epilepsy alone would cause sensitive eyes but I've heard things where people have this aswell as epilepsy... I don't know I'm just clutching at straws but I was thinking if nothing is visually wrong with me then in must all be in my head either imagined or something else going on??

I'll post up my list aswell as some other things I've thought of... I noticed it initially on my first ever driving lesson at the age of 17 which is very weird and alarming at that age

[farmgirl]

Sorry chattabob, I wasn't suggesting for a second that you just accept what you have and not continue to seek your answers. I understand your frustration, What I was saying was that in the meantime I hope you don't waste valuable energy stressing which you could be using to adapt by whatever means you find possible. I, like you, would not want to quit until I felt I had exhausted ALL avenues and with that I wish you luck.

For what it is worth some years ago I had a very bizzare movement disorder which the neuro's could not diagnosis. I concluded, after doing my OWN research, that what I suffered from was called Paroxsysmal Hypnogenic dyskensia. My neuro said that the test would be to try the drug Tegratol, as that was the only drug that would stop it. I tried the drug and sure enough it stopped it. When I went back he informed me that it could not possibly be that as the condition was so rare that there were only 4 known cases in the world. Good reason to rule it out wouldn't you say???? The condition involved seizures in my sleep. Anyhow I decided that if it was not related to anything that the doctors could identify then my mind must have created it, and if it had created it then it could fix it (kinda what you're thinking)

To that end I went to a really good hypnotist and within 6 (long) sessions she was able to rid me of the condition which I had for over 3 years prior. It has been 6 years this July and I am still seizure free...PTL. I guess that you could say it was 'in my head' but it was a very real debilitating condition and I suffered a herniated disc as well as torn muscles as a result. Because it happened only during sleep it could not be called psychosomatic but yet my mind was still able to control it. The body is VERY complex. I am thankful that I found my answer but in the meantime I had to learn to adapt and as I adapted my stress levels dropped. I wish you all the best in your quest but in the meantime I encourage you to stay as positive as is possible under the conditions...cheers F/G.

[littlemermaid]

Very interesting and useful and constructive on stressing and positive thinking and seeking diagnosis, Farmgirl

If counselling to help deal with this was available to us, Chatta, we'd be there like a shot so please post if you do get access on the NHS because it would help so many people.

Another list, Chatta: what are you thinking would help you? (assuming just for now that no one else knows your life)

Also, about the docs: they're all good and skilled at different stuff, as we all are at work, and most of us try to do a professional job despite the *&!*. I wouldn't be expecting the electrician to know much about plumbing, but if it's the boiler I'm wanting gas registered + electric + plumbing, preferably a clued-up team so they can 'phone a friend'. If they've got electronic diagnosis even better, although there's no substitute for the older bloke who's seen everything who they call in when they're stumped or the young guy fresh out of college who's a wizard on the computer control. Unfortunately, seeing the GP these days is a bit like talking to the call centre - pleasant but not enough knowledge. Yes, they could Google it.

NHS/private: So I think it's more a question of useful people, and I'm finding in the NHS these days less god-complex, more teamwork if they have the time. If good consultation isn't available to us because clinic management is weak, staff are underskilled, or we're put low priority, then I'm paying one-off but otherwise, TBH, it can be the same information with expensive tie. But you'll be wanting ongoing NHS monitoring with 'the team' and maybe prescription NHS. It has been worth paying the right ophth for one-off diagnosis and better dialogue and good consultation. This what I currently think.

Is it about coming to terms with managing and improving chronic mgd, dry eye and photophobia, like LM, and getting on with having a good life? or do you think there's another cause?

[chattabob]

To be honest I'm not sure what it is, if it is my eyes or if it's my brain or if it's something simple that no GP has thought of??

I posted the other week about how I was out on my bike and my legs were feeling the burn which took the pain away from my eyes somewhat which got me thinking is it all in my mind?? I had no health issues at 17 when this first happened.. in fact it was the opposite, my first ever driving lesson, lovely weather, England were playing in the European cup, good mates, good times, finished school for good Things could not have been better.

I'll do a list of my symptoms...

The first two started together and they were extemely painful and sensitive eyes in sunlight or natural light and at the exact same time I had two rashes on either side of my cheekbones that were rough in texture along with hot flushes and burning up... the hotter I got the more these came out. A bit like when the military put that black/green camouflage under theire eyes but a red rash ( Although this was fixed many years ago it has started a comeback in the last month??) i got hot very easily even in the house just with the heating on this affected my breathing where I could not get a full breath, most poeple would panic but I've been very calm with my health issues and I managed to correct my breathing although I do think it's hiding away somewhere as I've just changed my breathing technique

I get a migrane once a year that forces me to bed for at least 24 hours (This normally happens when winter changes to summer on our first hot day of the year

My Eyes when I have been in sunlight feel like they are being zapped of all energy by the sun and you can notice the fatigue in them after I go indoors or out of the sun, it does drain me.

I feel no pain underneath my eyes its always on the top of them either the eye ball or the lids feel like they are burning and one or the other irritates the other.

I have a light cough where I keep clearing my throat but I've have never noticed it as its very subtle so others rarely notice either, I have some drainage down the back of my throat and I probably do this around every ten minutes

I sound nasaly again I never noticed this it was only the sleep doc who said this and harley street when I went to see them

If a room is too hot where I sleep I get very congested in my nose/head but nothing ever comes out when I blow it, I also feel very tired when I wake up congested

If I am driving my car and the sun is shining at the side of my eye this doesnt usually bother me.

I'm always cold in bed despite the fact I usually sleep in sleeping back with 2 heavy duvets in the winter months ( I doubt that is that cold becuase my brother have one blanket??)

I get very tired easily for example if I have a conversation and do most of the talking I can feel my energy drain and you will find I get that tired I just stop talking or walk away from who I was talking to.

I have bags under my eyes and have done since this started when I was seventeen, everyone says you cant notice but you can, some people also call me the count as in count dracular (Not to my face though) which is what made me think all this was sleep related

My eyes are very heavy and always look fatigued, I actually compared a before and after picture and i looked so alive and alert before this where as now I look drained like I work a 12 hour shift have a stressful life, 7 kids to look after and stuggle to get through life, and get two hours sleep per night which is not the case. You've seen those kind of people and how they look though?? People say its just your age but what they dont know is this is from the age of 17 not 31

My breathing is somewhat out of sync so I am also looking at yoga to try and sort this.

I do feel like all of this is in my head, not made up but my head does feel detached from the rest of my body, it's not with it most of the time, to be honest i feel like a little bit of a zombie... on cold mornings when you go outside and take a deep breath of fresh air and it feels great? Well that never happens to me anymore.. I just cant seem to clear my head if that makes sense

I can manage 13 hours sleep per night and still feel exahusted when I wake up.. I just dont get that deep sleep feel like when your head sinks into your pillow and nothing will wake you up. Never happens anymore.

My face is more pale than the rest of my body which is why I think its something to do with somthing from the neck up.. it's like when you are ill or you've had hardly any sleep and you look so pale.

I am thinking about hypnotism as an option to overcome the light sensitivity but from the symtoms I've listed aboe I know that it cannot all be in my head and made up.

I'm just starting to exhaust the internet now on what else it could be i.e could it be anxiety? Around the time I was threatened, chased with a smashed bottle and some other things which is not great when you are a teenage turning into a man.

I will add some more if I can think of anything else

[littlemermaid]

Chatta, It sounds like a lot of anxiety and stress. It reminds me exactly of the consultation we had with the neurologist, and he was really good about it. We kept a symptom diary: feeling faint, sleeping daytime, waking exhausted, can't think straight, pins and needles in limbs, difficulty breathing, cramp, headaches, vision symptoms even optical-migraine-type moving lights. Physical response to anxiety, hypertension, not to be underestimated.

The cheek burning thing could also be a normal rosacea-type flush stress response (any skin type) because it can be stingy. First driving lesson would definitely do it, or suppressed anger, any heightened fight/flight feeling. Maybe look at MaryVA and Y-gwair's posts again on differential diagnosis, theirs is a very different response from immunology pathways - any swelling or joint symptoms?

Our neuro's solutions: Learn relaxed diaphragm breathing and practice relaxation techniques. He said in A&E they sometimes breath in a brown paper bag if it's bad. Yoga training, as you say, perfect for this. Singing. Laughing. Cycling.

Also I'll tell you 'orange satsuma' so you can try it now, which I am told is a martial arts technique to induce calm awareness and lower centre of gravity ready for action. Imagine there's an orange colour satsuma behind and 2" below your navel. Relax your breathing. Gently straighten your posture, relax your muscles. A Buddhist meditation teacher gave us this, he's with his llama/lama ATM (lol, I'm seeing a dromedary now). Back to the satsuma. The focus is now totally off the stress pathways and the mind is clear, great for consultations. Is it working?

Is your nutrition good? Has GP done all the well-being tests? Were you on oral meds at this time? post-viral? Hopefully, someone may recognise the other symptoms. The smashed bottle etc thing is bad, do you feel safe now?

http://www.dryeyezone.com/talk/showt...ght=meditation Focus on your healing. Allow yourself to gently mull on the roots of the problems, and clarify the ways forward.

[farmgirl]

Good Morning Chatttabob:

I read with interest your litany of problems. Your eyes are obviously only one symptom of which is obviously a MUCH greater problem. Treat the eyes to control that symptom by whatever means becomes obvious to you from talking with others on this forum but you MUST find the greater cause.

If I had your symptoms, the first thing I would be looking at is my thyroid function. You may have well been tested and told that your thyroid function is normal but the blood tests that have become the Gold Standard used by western allopathic medicine to diagnosis thyroid problems is seriously flawed. There are books out there (I have seen one at my local health food store) on thyroid function. I would get one and study it.

I am going to attach just a quick quip that I found on the internet http://www.ewtn.com/library/MARRIAGE/THYROID.TXT which goes briefly into basal body temperature and that is where you need to start. The book I saw explained it all but the short story is that you need to check your body temp in the mornings, if I recall, after you open your eyes but before you move about, with a thermometer in the armpit. If the temp is consistently below 97.8 for a week running then suspect thyroid problems regardless of what the blood work says. Study the book first but if you can't find one then email me personally and I will try to locate the title for you.

Good luck, keep searching, wear dark glasses and stay positive , until you find your answers...cheers...F/G

PS. Self hypnosis is a great way to relax and a good hypnotist can teach you the techniques

[spmcc]

Please don't assume that I can diagnose anything. But when I read your post recapping your symptoms, I thought of vitamin/mineral/nutritional deficiency - though maybe unlikely.

My experience was years ago I went to donate blood and was turned away . They told me to go see my doctor because my iron was low. News to me!!! I went and had blood drawn and found out that I had low hemoglobin and my ferritin was 1 (very, very low). When my GP gave me my results, he said, "You should be having heart palpitations!". Oh gee, would that feel like anxiety?!?!

So, perhaps you can get some basic bloodwork done including tests for vitamin/mineral deficiencies? Sometimes these things can help a doctor come up with ideas.

I hope you find something that helps.

[mgshutterbug]

Photophobia and inflammation

My photophobia is constant, and I guess would be called moderate/severe. When I have erosions/abrasions I am in total misery, as I am now. When it's very bright outside, I can't keep my eyes open enough to drive. And night driving is a horror show, done rarely. I thought photophobia was part and parcel with DES. From what I've been reading, it appears that it's linked (always???) with inflammation. Can someone please provide more information regarding this?

[chattabob]

I have been diagnosed with social anxiety in the past and to anyone watching me or talking to me would probably think I was anxious because I tend to look all over the place however, I only look all over or at the floor to avoid the pain I get with the light.... I could probably write a book on my health issues and it pains me to have been such a healthy teenager and such an unhealthy adult.

I think it was 2002 or 2003 my GP picked up on me being anxious but I only felt anxious when I was tired which happened to be most of the time. They started me on Venlaflaxine which has completely ruined my sex life, even now after stopping taking them.. so you can see how I get easily frustrated with the 3 things I loved and now I have zero! Sleep, Sex, and sunshine cheered me up and I don't enjoy any of those now.My GP also said to have some cognitive therapy along with medication... I think is was 22 or 23 and no way was I wasting 2 years of my life for the NHS wait time so I paid to go private and be seen straight away, I put up with the low sex drive as at least i was getting out of the houseand socialising. I didn't realise how much I had been hiding away being un diagnosed. I swapped to a different medication about two years ago and my sex drive didnt come back so last year I quit the medication and now I no longer take anything... to be honest I think they have served their purpose and I can now live a normal life as far as anxiety goes but no doubt this was triggered by being chased and threatend with a bottle.

Although the symptoms i have lsited can probably be put into the anxiety disorder i dont feel anxious when they happen or lose any sleep over them.

Nah no swelling of joints

This is another reason why I get frustrated as my GP's in the past have never done the basics of checking blood pressure, blood tests ect... I have had a test for my thyroid but would this test for anything else?

I was never on anymeds while this was going on and really didnt want to either as I didnt want to go in the downward spiral of being messed up by drugs. My diet is ok.. I don't eat huge amounts but nothing has really changed over the years in terms of what I eat

[chattabob]

Do they test seperately for things like this or does one blood test cover everything? I tend to when I'm out of ideas of what's wrong with me take vitamins or iron vitamins but no difference

[chattabob]

Good Morning Chatttabob:

I read with interest your litany of problems. Your eyes are obviously only one symptom of which is obviously a MUCH greater problem. Treat the eyes to control that symptom by whatever means becomes obvious to you from talking with others on this forum but you MUST find the greater cause.

If I had your symptoms, the first thing I would be looking at is my thyroid function. You may have well been tested and told that your thyroid function is normal but the blood tests that have become the Gold Standard used by western allopathic medicine to diagnosis thyroid problems is seriously flawed. There are books out there (I have seen one at my local health food store) on thyroid function. I would get one and study it.

I am going to attach just a quick quip that I found on the internet http://www.ewtn.com/library/MARRIAGE/THYROID.TXT which goes briefly into basal body temperature and that is where you need to start. The book I saw explained it all but the short story is that you need to check your body temp in the mornings, if I recall, after you open your eyes but before you move about, with a thermometer in the armpit. If the temp is consistently below 97.8 for a week running then suspect thyroid problems regardless of what the blood work says. Study the book first but if you can't find one then email me personally and I will try to locate the title for you.

Good luck, keep searching, wear dark glasses and stay positive , until you find your answers...cheers...F/G

PS. Self hypnosis is a great way to relax and a good hypnotist can teach you the techniques

I always use to go to my GP with the same issue with my eyes in the hope that a different GP may think of something new... each time I went though I was sent away with a new problem for example I had some blood tests taken and they came back as having an overactive thyroid although my follow up questions "will this be causing my extremen tiredness and sensitivity to light?" I was told no! So stupid me spends two years sorting my thyroid out and no time trying to sort out the reason I went to the GP.

My thyroid is now under control but everyone says underactive would make me tired and overactive would make me hyper which was not the case... To be honest from start to finish I felt no difference what so ever from treatment to cure, not one bit! My thyroid was only slightly over though.

"Good luck, keep searching, wear dark glasses and stay positive , until you find your answers...cheers...F/G"

Please keep these positive comments coming as I cannot give up on my health Sex drive, sleep and feeling good in the sun I am sure is on everyones list of what they love about life

[spmcc]

This is another reason why I get frustrated as my GP's in the past have never done the basics of checking blood pressure, blood tests ect... I have had a test for my thyroid but would this test for anything else?

Do they test seperately for things like this or does one blood test cover everything? I tend to when I'm out of ideas of what's wrong with me take vitamins or iron vitamins but no difference

As a woman, I may have an easier time of it... I basically walk into a clinic and say, "It's time for my annual bloodwork". If I have to, I explain that I was found to be severely iron anemic in 2003.

(Looking back I don't know why I never had any blood tests prior to the shock of being turned away at the blood donation clinic. I now preach that everyone should get annual bloodwork).

Standard tests any GP/MD would order include blood cell counts, glucose, cholesterol, major electrolytes, and liver and kidney function. This may include tests that check for general inflammation (e.g., ESR, CRP) - or you could ask specifically for those to be included (they're cheap).

I've also had no problem getting tested for autoimmune diseases (e.g., RF, ANA, ENA) due to having dry eyes, Raynaud's, and lots of relatives with MS and RA (perhaps your family history includes some people with autoimmune diseases, hmmm?).

As for vitamin/mineral deficiencies - these are thought to be very unlikely in the developed world with our access to plenty and varieties of food. I think naturopaths may be the most likely to test for these things (this will cost money, unfortunately).

Perhaps if you went to a GP/MD with specifics of what you want to test... however that sometimes "insults" the doctor and they shut down... maybe someone could offer some additional hints as to how to go about this delicately (if you're even interested in pursuing this?).

[chattabob]

I'm willing to test everything and anything... I could do with a full MOT with nothing left out.

After my first blood test with the same GP I saw I did notice he only ticked a few things to be tested TSH levels or what ever the abbreviation is for the thyroid test. No idea wht he did on the first one though.

As I mentioned earlier about one of my symptoms being and feeling flushed in the face and the heat rash under my eyes, this has now come out again and is itchy and red. i managed to get the secretary at my GP's to give me a list of creams I used around 10 years ago and the one I had was to treat fungal infections ketoconazole it was called which worked instantly even though I had suffered for 2 years feeling like this as I feared I would not find a solution (What faith I have in GP's ay lol)

I am due a phonecall tomorrow to discuss this as it's prescription only.

I cant help but think there must be a connection between the 3 things

Light sensitivity
Flushed
Rash under my eyes
Puffy eyes

As they all happened together.

I've pretty much done my list of symptoms so i may hand this into the Dr and specialists in the hope they can do some brainstorming or hopefully send it around the world to every Dr lol