Awakening ptosis, anyone else have?

[Dogwind]

I have recently started experiencing awakening ptosis, it is associated with autoimmune diseases and ocular pathology.

Just wondering If anyone else with Behcets has it?

Brief overview.

Awakening ptosis (AP) (transient complete ptosis confined to awakening from sleep that resolves with mechanical elevation of the eyelids) is a rare clinical presentation.

AP appears to be associated with autoimmune disease and a history of ocular pathology. As has already been mentioned, the ptosis of AP resolves when the patients mechanically elevate their eyelids, whereas AEO patients may try manoeuvres such as lightly touching their temple regions, using their frontalis muscle to elevate their eyebrows or engaging in backward thrusting of their head, in attempts to open their eyes. AP frequently resolves within 18 months of symptom onset; on the contrary, a review of patients with isolated AEO reported an average disease duration of more than 4 years, with a range between 1 and 8 years. Thus, given these vast array of dissimilarities, it is likely that AP and AEO represent separate clinical entities.

conclusions

AP is a well-defined clinical entity with a benign nature. It is predominantly unilateral, typically affects white Caucasian women around 60 years of age with a history of autoimmune and/or ocular conditions, and usually resolves spontaneously within 18 months. AP has distinct differences to AEO, and it may represent a rare and currently unrecognized sleep disorder. I propose for the first time the essential criteria for the diagnosis of AP: (a) recurrent transient ptosis (unilateral or bilateral) confined to awakening from sleep; (b) spontaneous eyelid opening after a few minutes or upon mechanical elevation, after which complete volitional control is regained; and (c) not associated with known neurological or ophthalmological causes of ptosis. Clinicians encountering patients with AP can reassure their patients that their condition is likely to be benign, and that it will probably resolve in a number of months without any intervention. However, identification of a treatment would be particularly beneficial for those patients whose symptoms persist for several years. Clinicians should also be aware that laboratory testing and neuroimaging are not indicated in these patients, as patients with AP that have been investigated with neuroimaging and laboratory tests have all shown normal findings.1–3

There is still much that is not known about AP. For example, accurate prevalence data are lacking. Even though the small number of patients in the studies by Cherian and Foroozan and Reggie et al. might indicate that AP is very rare, it would nevertheless be useful to establish the relative prevalence of AP in neuro-ophthalmology practices outside of North America. With respect to the pathophysiology of AP, detailed investigations of patients using polysomnography would help to confirm sleep-related muscular atonia as the cause of transient ptosis confined to awakening from sleep, as well as to identify any additional changes in sleep architecture, such as sleep fragmentation. Interestingly, AP has not received a mention in current sleep medicine classification systems or textbooks.25,26 Given that AP may represent a novel parasomnia, sleep physicians ought to be aware of this condition, alongside neurologists and ophthalmologists

[lesleyg]

Hi, I have to admit I’ve never heard of it but it sounds horrible not being able to open your eyelids after waking up. How long have you had it? Lesley

[Dogwind in reply to lesleyg]

Hi Lesley

Hope you keeping as well as you can, especially in these trying times.

Had it for a couple of weeks now, really freaked me out when I first experienced it. The diagnosis is a self diagnosis via Dr Google, if I went to my GP I don't suppose they would know anything much about it either. No I'd never heard of it before, thankfully the little information I can find is not to worrying.

Interesting that the little research there is identifies its association with autoimmune disease, hence my interest.

Stay safe

Ian

[Dogwind in reply to Dogwind]

PM sent

[lesleyg]

Thanks Ian. How did you get your interesting user name? Apparently once you do have an autoimmune disease it is quite possible to have more than one. Have you had an official diagnosis of Behçet’s diséase? It’s a very hard disease to actually diagnose. L

[Liou]

Hi Ian,

Thanks so much for posting this fascinating condition. I’m an optometrist (and have Behcets).

Can I ask does it affect both your eyes? Do you have to manually open your lids when you wake? If you don’t manually open them, how long does the ptosis last? Have you tried using a ocular lubricating gel (eg viscotears gel) before bed to see if it makes any difference (some of my patients have trouble opening intially because of dry eye)? Sorry for all the questions!

I hope you are otherwise going ok and that if you have AP it resolves sooner rather than later.

Thank you again for educating me on this condition.

Kind Regards, Louise

[Dogwind]

Hi Lousie

Fascinating but also slightly scary when I first experienced it. I don't know if it is particularly rare, hence few studies or whether because it is relatively minor nobody pays it much attention, either way just knowing about it makes a massive difference.

In my case it only affects the left eye, one eye seems to be the norm. I am a male and under 60 so that puts me outside the normal cohort, I like to be different. Yes I have to manually open my eyelids, I've gotten used to it now so don't even think about it. I have never not manually opened the eyelid so I am unable to say how long its lasts, sorry. Perhaps I will try one day.

This is the second time I have had this condition, the first last year some time, but that spontaneously resolved itself after a few days so I did not pay it much attention. This was mentioned at an eye hospital visit but they could not find anything physically wrong with the eye.

I do not have dry eye or anything else that I can see would cause this condition. From my understanding if it is caused by dry eye then it would be AEO though there is not enough research to be able to clearly differentiate.

Hope this helps. Please feel free to PM if I can provider any more info. Don't know where you are but if I could assist in any interest/research I would be more than willing.

Kind regards

Ian

[Furst]

I don't think I have this, however I do increasingly struggle to move from sleep to being awake enough to maintain consciousness.

When I wake up I feel like I've had an anaesthetic and can't yet come round.

Don't think it's the same but it's new to me and quite odd.

All the best.

F

[Dogwind]

Hi

Sorry to hear, sounds awful. Have you been down the medical route to try to determine cause?

Hope it clears soon.

[Photogirl76]

hello

I do not have Behçet', but I joined this group to respond to you because of how rare this condition is. I’ve never spoken to anyone else who has had it. I’ve been dealing with it for 10 years. It’s terrifying and no one can seem to diagnose it or find what is causing it.

I see you wrote this 4 years ago and hoping to see if you have any more information on it. It seems to come and go in bouts.

Hope you are well

[Dogwind in reply to Photogirl76]

Hi

Yes written what seems like so long time ago. After the episode that I refer to passed I have not had a recurrence.

Despite much research, at the time, I couldn’t find anything much more than what I posted and as the issue passed I gave up looking. I did not seek any medical assistance but mentioned it during a regular visit to an eye hospital which just drew a blank. Sounds all too familiar when dealing with Behcets.

Sorry I can’t offer you any great pearls of wisdom. 10 years is a long time to be dealing with this I only hope it revolves soon.

Take care.