[Stacielee1967]

Has anyone every experienced bizarre sight problems. For the past few days, when I wake up I see these spider type objects on anything I am looking at (wall or dresser). The further away the larger. Now if I am looking at the wall, there are many of these spider type objects, about the size of a baby’s hand. They start to fly at you and as they do they become smaller and stay in the centre of your vision field. At first it scared the *&^% out of me and I started swatting them and hid under my blanket. My husband thought I was having a bad dream. I closed my eyes and I could see things moving while my eyes were closed but they were really tiny. Anyway, this went on for about an hour and I looked at my husband and said I think I need to see a doctor. I think I am hallucinating!! Anyway, fell back to sleep and woke up again and they were back. I know they are not real but it is so bizarre. Every time I wake up I see the same thing and it goes on until I get up and moving. I am afraid to go to the doctors for fear I might wind up in a funny farm. I am off the steroids as I know you can get a reaction, steroid induced psychosis so that’s not it. I am on Methotrexate 25 mg and Plaquenil 200mg twice a day; Plaquenil was restarted about 3 weeks ago. I only take prescribed medications and my only history of recreational drug use was 22 years ago 1 time but I got a rash never tried it again and it never included acid. The stamps I buy are self adhesive and I don’t play with sticker books and the sugar I use does not come in block form so I know acid has not entered my system so it’s not a flashback. (Humour makes bad things seem not so bad!) Does anyone have any clues???

 

[Clare.T]

Hello Stacie

To kick off with, I go through life on the premise that when I go mad I won't realise it. Luckily I feel crazy most of the time.

I'd say you would deserve locking up more for not going to the doctors, self neglect. It sounds to me like "floaters", bits of vitreous gel breaking off at the back of the eye. What you see is their shadows. Let's assume they are floaters. Mostly floaters mean nothing serious but they are scary if only because we don't know and can't know what they are until we get checked out.
I got my first one on Boxing Day and was so worried it could be a a sign of damage occuring. It was the fear of losing some sight because I had not wanted to "make a fuss" and how much I would reproach myself afterwards that made me decide to go to my local A&E. As it happens, they sent me on to 24/7 opthalmology emergency service at a regional hospital where I had an expert total eye test.
I thought I had a large leggy thing in my eye.

First, I had heard of these things so I looked it up and then I ran it past NHS Direct. Their view was that it was probably nothing serious but best to get it checked just in case.


The best place to go IMO in fact is the optometrist who can do a proper eye exam. ( I am talking about the UK ) That's where I would have gone if it had been a normal weekday. Now, there's such a low risk of Plaquenil causing eye damage that it was determined that people taking it didn't need eye tests. Or rather, the NHS didn't need to pay for them, to be cynical. All the same it is ideal to have eyes examined if at all possible before taking it to get a base line and at intervals thereafter. I haven't heard of Plaquenil causing floaters by the way. One of the tests for Plaquenil is the macular visual field test I don't know if they will do it on this occasion, you can always ask. Right now the main thing is to get checked and most likely reassured.
I do understand the frame of mind when a person seeks to blame themselves for anything going wrong with their health because I used to do it myself. I don't know why it should be, but in my case I was brought up to feel guilty even for other people's misdoings as if I should have been able to stop them. People who feel guilty are usually those with the least reason for it and even if it was something stupid you did and wish you hadn't, so what."They" haven't go to the point yet where they tell you it's your own fault, so we won't treat you.

By the way, just in case you would, when you go to the doctors, it really isn't necessary to start talking about your inner fears about what you think you might have done to cause whatever the problem is or blaming yourself in anyway. I mean it's a total red herring. I realise you were joking but when I first started reading your reflections at the end of your post I was really startled and thought what on earth is she talking about.
It's rather like joking with security at the airport.

I'll be looking out for news from you & best of luck

Clare

 

[Stacielee1967]

Clare,

I called the GP emergency line and spoke with the nurse. She told me to call the optomatrist, not the normal high street ones, you know what I mean, the ones who sell you glasses that you really don't need, magnifine ones that run over 100 pounds ( new keyboard, must be from America, no pound sign) not the 4.99 special from Tescos. Anyway, called them and they will see me in the morning. This specialist has a contract with my GP's and they do a complete exam at no charge. I have seen them before and was very impressed. They informed me my glasses (Guess Brand) 175. pounds are nothing more then magnifine lenses. He informed my my vision does now require reading glasses but told me not to buy any until this flare settles down and see if my vision may return to normal or what I am use to. He feels that I am no longer able to focus while reading because the body is trying to reserve itself and and placing its energy on more important things. Anyway, I will let you know what they say.

Thanks, Stacie

 

[Clare.T]

Jolly good Stacie !

I must ask my GP if he has such a contract. Even though I don't have to pay it would be interesting to know. I'd make sacrifices to get a regular eye test just for my peace of mind having been on high doses of Plaquenil or Aralen for many years now. I know what the signs of potential damage are but like the assurance. Yes, it is not an optician selling specs but an optometrist one needs to see in the UK. Nowadays they are qualified for this sort of specialist care.
Interesting comments about reason for poor eyesight. People's sight typically deteriorates in their mid forties.


Bye for now

Clare

 

[elisabethm]

Hi Stacie i have had a problem with my eyes but it was not the same as you mines was double vision .Had been going to hospital to the eye clinic when i seen the optomarist and he got vicky to put prisims in the right side of my glasses i had to go and see her every 12weeks done that for a year.Then i was back at him last month and he said he did not know what the problem was.So he told me to take the prisim out of my glasses.But if it keeps happening put the prisim back in.Then got a phone call from my own optitian to go for an eye test went last week and he said that my left eye was a lot weaker than my right so had to get 2new pairs of glasses [ps doc at hospital said i would have to go back to him once a year because of the palequne] so i do hope you get something done as there is nothing worse than something wrong with your eyes let us know how you get on Best Wishes From Elisabeth

 

[samour]

Hi Stacie,

I would also let your Rheumie know this as well, as eye problems can be caused by your medications and Lupus.

Sharon

 

[Stacielee1967]

Its not my eyes!

To let all you know, it is not my eyes. He did a really good examination and has informed my eyes are fine. He thinks it is a neurological problem associated with the lupus. He said floaters come and go and are not specific like my complaint, I only get it after waking up from a nap or in the morning. I guess thorazine or haldol will be added to my list of 17 medications. Hallucinations are something I can really live without!! If I want to look at the bright side of things, at least they are not all day long! I wish they were pretty things such as flowers not ugly spider type things. On the other hand, auditory hallucinations that say stop eating your fat pig! I might loose some weight and not look like a tick, (small head, fat body). Or I could have had the hallucinations where you smell things like chocolate. But noooo! I have to have the nasty spider ones. I am finished venting for a while.

Take care
Stacie

 

[Stacielee1967]

Update on Vision

Thanks for all your feedback. Joking aside now because I am really scared. I have been to the GP and she stopped my Plaquenil. Saw the Rheumatologist nurse specialist and she has never heard of anything like this and since the visual disturbances continued she has restarted my Plaquenil. My GP wrote to my Rheumatologist consultant last who has requested an urgent MRI of the brain which I have next week. She wrote to me and said she wants to have the MRI to see how active the Lupus is. Has anyone heard of anything like this at all????
Stacie

 

[Flibble63]

Spiderthings

I had something sort of like you are talking about. I would wake up and see these huge black spiders dangling from strings right above me. They would get to the bed and then I would go wild searching for them in the blankets but of course nothing was there. My husband would get fairly grumpy as in the wee hours of the morning I am clicking lights on and ripping covers off.

The really odd part is I would see them in total darkness just as I was waking up. I mean the room would be pitch black where you couldn't see your hand in front of your face. I was wide awake and aware. I never told my doctor about them. I just got used to seeing them and stopped freaking out and after several years they went away.

So if you get an answer about spiders I would be really interested. Good Luck!

Laura