Does this affect anyone else this much?

[nutteetart]

Dear all,
I havent been on here for a while after i felt like i shouldnt keep depressing you but i have no one who knows like you do.

I have been diagnosed with dry eye but it is so much more than that. My face is permanently contorted in a squint and I feel nausea and dizziness. I cant read or watch tv or even work at the moment, my head feels like there is a constant band around it from presumably eye strain and my neck hurts (probably from tilting my head to see). I also have aching in my throat and some vibration sensations down my left leg. (noticeable since i had a hysterectomy in September) Out of desperation I paid to see a private professional who, to a degree, is herself unsure. I am now being put back through the NHS and will be given punctal plugs in 6 weeks with a view to botox for what could be a spasm (but is not typical). I feel very scared that there could be something more going on so i have made another appointment to see my gp in a few days.

I even asked one optician if it could be ms and she said no. Can i presume that any possibility of this would have been picked up from the combination of optician and opthals Ive seen? I did manage to find something that describes my condiditon exactly (except for the dryness) called vertical heterophoria (even though i really shouldnt google my symptoms!), but the opticians have said it isnt that.

I have a history of anxiety and depression but wonder if this condition has affected anyone else to this extent or whether my mind is playing tricks on me?

I am on doxcycline and lacrilube for the eyes and lyrica for anxiety.

So worried. Sorry if i have upset anyone by being depressed about this :/
Thank you

[littlemermaid]

So sorry, Nutteetart (hug) - I think keep pressing on for a diagnosis with Ophthalmology, GP, Neurology, everyone. Sometimes it takes a while to find someone who knows what it is. Neuro might be best on symptoms.

I honestly don't think it hurts to Google and make up a checklist of possibles, and get all medics on the job. I do like a Consulting Pharmacist too. And I had a very interesting chat with a chiropractitioner about connective anatomy the other day - 6y training. Make sure everyone gets a list of all your meds (inc past meds if major, like psychotropic) so they can check for side effects.

The key to medics has been to ask questions. Then it gives them a chance to think about it, look it up, ask someone, or say they don't know. Then we ask 'who might know?' Then we get an NHS referral. Otherwise they are negligent to ignore symptoms.

My sister-in-law has MS and it doesn't sound like her version. I wouldn't think an optician would have much of a clue about neuro or should even pretend they do, but the training is getting better so they may pick something up. Ours is great on observation of eye movement disorders but he's a final year clinical optometry lecturer.

Do you have GP referral for CBT or similar? A regular appointment with anyone sympathetic does help.

No, your mind is not playing tricks on you. I have an agoraphobic friend who's been on benzodiazepines through the 80s when they handed them out like sweets. She's pretty neurotic, lol, but she does not have tremors or vertigo.

Is there an endocrinology imbalance still post-surgery?

Is it nystagmus?

[Roe72]

I had to stop taking Lyrica because it was CAUSING neurological symptoms. It took about 3 weeks for them to go away after I quit taking it! Check with your MD though. I don"t think you are supposed to just stop it. May need to taper dow

[nutteetart]

I have done all the cbt they can offer and to be honest, my anx is generally better since hysterectomy and last time i asked about endocrinology, my gp shrugged his shoulders but i am seeing gp again on thursday.

I have been on lyrica for 4yrs and again gp didnt think that was a cause. im going to ask for bloods to be done though because its worth checking my hormone replacement isnt exacerbating and after such a trauma to hormones i think that my thyroid should be checked again.
I understand that many people on here are facing terrible problems but i am truly concerned for my sight.
I have fought agoraphobia for many yrs but to show how hard im trying...im still walking my dog despite only being able to look down with squinted eyes. i figure if im going to collapse, someone will pick me up!
As for nystigmus. im scared to find out! That can be ms.!
What nuero probs did lyrica give you Roe?

[Roe72]

It made my hands swell up at night. Then I started having nerve problems in my hands and arms. I was only taking 75 mg 1 time a day. It really helped my corneal pain. Nothing else does. I really miss it!

[NotADryEye]

Lyrica helped my eye pain as well, but the side effects were intolerable. I couldn't tell where my hands and feet were or what temperature anything was. And these were the easy side effects.

Nausea and dizziness can be caused by so many different things.

You say you squint all the time. Is this because of the pain? Can you describe the pain exactly? Where is it? In what part of the eye? What does it feel like? Is it sharp or dull or like a foreign body or burning?

[nutteetart]

i mainly squint my left eye which feels dry and gritty and feels a general urge to squint. there is sometimes a dull aches and sometimes it feels like its trying to focus even when its closed. my right eye is sore all the time and feels heavier and is often half closed. sometimes they both burn. all of these symptoms lessen on a good day but over the past few months ive only had one good day which annoyi
ngly was the day i saw opthal!.
i wonder if lyrica would have an accumulative effect.
as for nystagmus, its not obvious and i would have hoped it would have been picked up already.
Terrified they will put me in an mri machine. Just terrified generally actually.

[littlemermaid]

Does the Lacrilube help? have you got any other daytime lubricant eyedrops that you like? are warm compresses and gentle cleaning helping?

Do you like the GP? Not keen on the 'shrugged his shoulders' when you asked about hormone and thyroid testing. Ours have been non-starters, especially on eyes and neuro. Is there a nice female GP there? You do need supportive doctors to investigate this with you.

My d. had MRI and she said it was OK. They did find the brain slightly displaced but it's been OK - best to know then we can get the help and support of the kind docs. It does sound like your poor dry eyes rather than anything Neuro though.

[nutteetart]

thank you. that means alot.
i forced myself out today but i truly can hardly see and crying hasnt helped. i am going to use all my cbt skills and stop scaring myself. if im logical then my sore eyes could well be trying to use a squint as a support which in turn limits visual accurity making me feel dizzy. the anx then kicks in exacerbating the whole sorry mess by tensing my body etc etc. Does this sound more realistic?
The lacrilube doesnt do much tbh but its the most comfortable option oh and tear lac isnt too bad but nothing offers a moment of freshness.
my gp told me to stop the scrubs and compresses are temporary relief but im just about to indulge in one.
i am asking gp for bloods to be done tmrw because this is the worst my eyes have been which coincide with an increase in my estrogen replacement in Nov. is there anything else i could ask him to screen for as ive still got 5 weeks until my plugs.
thank you again x

[Guest]

Terrified they will put me in an mri machine.

I've had a couple of MRI's, and to be honest, I think it's kind of a cool experience. It's basically just lying down in a giant noisy tube until they tell you they're all done If you don't like it in there, you could always just close your eyes and pretend you're somewhere else.

Hang in there!

[littlemermaid]

Also, in NHS we can listen to our own music in there. Very good to hear the CBT is kicking in. Keep posting to tell us how it's going.

[nutteetart]

Been to see GP who has put me on anti depressants. He can see that my eyes are causing stress which in turn is bringing me down.
He is happy that I have nothing else neuro going on as he feels that the consultants that have seen me would know if there was something of concern but he has agreed to run bloods on thyroid, liver, kidney anaemia etc. I cant ask for more than that really.
Just one thing though, I wonder what came first; the dry eye or my squinting because it feels like my eyes dont track properly, like I have a laziness. The opticians are happy with them though but, that is why i squint i think. Does anyone know of this and would an optician pick this up routinely?
Anyway, I am less panicky today and I want to thank you again for your support.
x

[NotADryEye]

Here, the docs and MRI techs ask if you are claustrophobic. If you say yes, they will give you a sedative that makes the MRI experience easily tolerable. Someone will have to drive you, but it is not a difficult test or painful. You just have to lie still for a while.

I used to squint too. Dry grittiness, that sounds like aqueous deficient and so you feel everything in the eye. It's not good but for this there are plugs and cautery. Also, hypothyroidism and Sjogren's can contribute to AD. Not a bad idea to get tested, if you haven't already. If hypothyroid, that is very easily treated with Synthroid, Cytomel or other thyroid hormone replacement therapies. My AD has improved tremendously now that hypothyroidism is being treated effectively, alone with countless treatments for everything else.

You might ask about conjunctivalchalasis. A long word. The tissue over the whites of your eyes might be wrinkled. It can feel like hell. Makes you not want to open your eyes at all. So you squint. I had this and surgery to correct it. No problems with it since. You can have pain and all sorts of horrible sensations, like tissue stuffed under the eye lid, heaviness, etc. Because one eye feels worse then the other, this is not unusual. And when drops and ointments aren't helping, conjunctivalchalasis can be the problem. For some reason I do not understand at all, the condition is frequently missed by ophthalmologists.

Burning is usually a symptom of meibomian gland dysfunction. The meibum is of poor quality and your glands may be blocked. The lipid layer of the tear film is consequently poor, quality and/or quantity. There can be a host of reasons for this. inflammation, demodex mites, bacterial infection, etc. Omega 3, doxycycline, warm compresses, maybe probing. What did they say about the condition of your meibomian glands? Did anyone mention frothy tears?

Are the doctors just not diagnosing anything with sufficient specificity to address and treat your likely numerous diseases? It seems like that to me from here. They have to diagnose and treat all of the diseases in order to get you relief that is lasting and real. But don't give up hope.

Littlemermaid always seems to know the best resources in London and is always sharing what/who she knows. She is a gem.

[littlemermaid]

NotADryEye, thanks but we're all in this together, docs and patients. We are still paediatric so we haven't done the rounds yet. You are helping me and lots of people dealing with autoimmune conditions, NADE. That's an important post about hypothyroid - still not well recognised in UK. Let's hope Nutteetart gets improvement with punctal plugs too. Infuriating that they are making her wait 6wk but they do this so she's been observed before bunging plugs in.

[NotADryEye]

Sadly here too I don't think the connection between aqueous deficient and thyroid is well recognized.

Also, mg dysfunction, and hypothyroid. If you have dry skin and brittle hair when hypothyroid, why not also poor meibum production, low quantity and poor quality. It shouldn't require a study. It is common sense, IMO.

Imagine, if your feet and hands and nose are cold when hypothyroid, why not also your eye lids which leads to thick meibum, mgd, and then the cascade of dry eye co-morbidities.

The eye lids are just another cold extremity that doctors should be recognizing without a study, just common sense, IMO.

Maybe that;'s the angle for us patients to approach doctors who won't test for the disease. Say my hands and feet and nose are cold all the time. Maybe that will get you the test more easily.

Thank goodness nutteetart is finally getting tested!

lm, you are a gem, no question about it!