Hi there
I have ben having problems with blurred and double vision and loss and also field vision problems, that the Eye department cannot diagnose and they seem to have lost interest after I had nerve tests on the eyes.
I noticed when on 24hr oxygen for 7 days in hospital that my vision problem seemed better.
Has anyone got any info or suffering from the same thing
thanks Andrea
Interesting about the oxygen. I've noticed that I am often 'blue' above the top lip.
Lesley
Hi Lesley
This oxygen business is a new revelation to me but have suspected low oxygenation for some time, at least a year now.
I first purchased an Oxymeter that goes on your finger and measures oxygen and pulse. They are not very expensive and very useful to see if there is a problem as this can give lots of neurological symptoms if low and not treated.
Recently I purchased another type of Oxygen meter that is like a wristwatch and attaches to your finger by lead. This records over 24hrs and gives you lots of info and a complete reading of your base rate and lowest oxygenation, which you can upload to the computer and print out.
I have been able to see that my oxygen levels go down to 87% definately during my sleep and also to a lesser degree, during the day, but are still low all the time.
Anything below 95% being a worry, hence my being on full 24hr oxygen by facemask for 7 days - whilst in hospital. Now back with no oxygen have returned to the previous levels of 87%.
A basic link says about the symptoms here
livestrong.com/article/7326...
Thanks for replying Lesley
Andrea
Andrea, my sats (oxygen saturation levels) have been low for about four years now - and getting lower. They hover around 90% and when I was an inpatient for my inability to breathe it was only 93% on 10 litres of oxygen! They seem not a bit interested. They took arterial blood to check the true oxygen level (that is, not just an indication of it that the pulse oximeter gives) and, once again, it was very low. I can't remember the exact figure now but I do remember the doctor being a bit shocked and the O2 at my bed-head being whipped back up to 10 litres pretty swiftly!
I also frequently have a rather blue top lip.
I figure if they're not interested, well I'm not going to die imminently (at least I hope I'm not, I've got an awful lot of expensive knitting yarn to get through!). If I was about to kick the bucket then they'd all be covering their arses against litigation. Ergo - sod it and que sera sera.
However, if my low 02 levels were affecting my vision I'd be kicking arse because my greatest fear is to lose my sight.
I guess we all survive this dreadful bloody disease in our own way - my way is turning a blind eye to the things that I can.
I don't suppose that helps at all really 
Feeling very sorry for myself today so it's probably best to take the things I say with a shovel load of salt
Hi Di
Glad your back even if you have got the hump and I don't blame you and I am kicking arse with the Hospital Director next week as they have set a meeting up for me to discuss it all with them.
I had 5 seperate blood gas tests as well as the oxymeter tests and was put on 28% oxygen 24hrs a day for 7 days and a CPAP machine with oxygen overnight with the intensive care unit. This was to protect my weak and shallow breathing at nighttime where the SATs oxygen would drop to 87% even with the oxygen on.
Whilst on the oxygen I noticed an improvement in my eyesight, which has now returned back to how it was and suspected it may be down to the oxygen levels.
The problem I had in hospital was that the ward I was on was not doing as the ICU had asked and ignoring the additional problems and only trying to treat Exasserbated Asthma when I haven't been diagnosed with Asthma.
They didn't check my oxygen levels when I came off the oxygen or when walking. They just discharged me still feeling ill and still suffering with oxygenation problems.
In the meantime, when I got home I contacted the eye dept as I'd had some other tests to show the nerves in the brain that drive eyesight and hadn't heard from them. Only to be told that the Consultant will see me in the regular follow-up in 2-3 months time..........obviously the tests showed nothing and the fact I am losing my eyesight is not that important to Consultant, not even important enough to even tell me the test results don't show the problem.
Like you, I have a lot going on Di and am just trying to keep my head above water. To me not being able to breath properly or see properly is pretty important and not one I want to ignore.
Hello my lovely
Boy, I was arsey eh?
It wasn't directed at anybody in particular - certainly not you! I was/still am cross with the world. Not a very common mood for me, which makes me even more cross!
I know exactly how scary it can be when you can't find your breath and that combined with possible vision damage is scary indeed.
This is just an apology in case you do think it was directed at you and your problems - I'm hoping you know me a bit better than that? I just think that the world of the BD patient is a pretty shitty place to be.
xxx
Hi Di
Thanks but no probs...I fully understood where you were coming from. I knew it wasn't me you were having a go at.
I am pretty volatile myself at the moment and my poor oh is going through it a bit. But like you I know when I am like it and can say sorry...after all we are all only human.
As for the Behcets world, I agree it can be a pretty shity place to be. But it's is because we have this in common that I understood.
Not normally huggy...but here's a few coming your way 
Andrea
Hi andrea
Low oxygen does not cause loss of vision in practice, however, more than 100 oxygen is given in 4 hours and can cause blindness. CPAP application pulmonary disease (COPD) is used with application of a method of treatment is generally low concentrations of oxygen. Oxygen saturation should be between 95-100 with my students doing internships in intensive care unit patients, and I know the media is very nice to have you back
See you soon, bye
Thank you Sunset
My daytime oxygen saturation now walking around is 91% and my sleeping oxygen saturation is 87% at it's best. So you can see it is on the low side all the time now.
I have already been diganosed with Sleep Hypopnea but haven't got a CPAP at home yet as my hospital appointment for this is in December. I wake up frequently with chocking and also have extreme jerking of all limbs, stomach and head in my sleep, that wakes me up. This leads to terrible sleep deprivation symptoms during the day time.
My blood gas tests also show low oxygen and I suffer with typical symptoms of low oxygen such as dizzyness, nausea/vomitting, palpitations, headaches, anxiety & irritability, fatigue, memory loss and confusion.
When in hospital I used a CPAP and found an amazing difference to my sleep and also how I felt during the day.
Is this something you are familiar with in your knowledge of Intensive Care ?
Andrea
Thank you very much Sunset and it is nice to hear from you too
I have sent you 2 replies as I found this link [and others] that states low oxygen in blood gases can cause vision problems.
The link is - sorry it is in english
buzzle.com/articles/low-blo...
What do you think about this for us to discuss ?
Andrea
Hi andrea
Non-invasive mechanical ventilation (NIPPV), ventilation, endotracheal tube is to use. NIPPV in "a special mask to the patient (eg, CPAP mask) is connected. Only be used in patients conscious. SaO2 85% "from the low and prone to fall, Respiratory rate is more than 35 and so on. are reasons. Andrea looked at the site you typed. I have personnel who are not physicians, for example, 911 ambulance personnel, emergency medical technicians in you grow, we wrote letters, we describe lessons to students. Health / Emergency Medical service teacher
to discuss
Thank you again Sunset
You must have a very interesting and worthwhile job looking after emergency personnel students
That is very interesting as whilst I was in hospital this is what I had. It is quite frightening at first because you have a very tight mask over your mouth and nose and it sucks in hard and then produces an air flow with oxygen.
It does seem a drastic solution to enable a good nights sleep etc but when you can't breath properly or sleep it creates problems in life.
But I soon found it re-asurring as I could drop off to sleep without the jerking and choking waking me up. Then I could relax and rest my breathing from struggling.
During the day I had more energy and was clearer in mind and so the positives outweigh the negatives for me.
Andrea
Hi sarah-lou
I purchased a straight forward digital finger oxymeter from ebay [dare I say]. These are perfect for on the spot checks for oxygen levels and pulse rates.
I then wanted to be able to see what was happening over a space of time [say 1 hrs of being awake] or overnight while I slept and so purchased a wristwatch Style Oxymeter which actually records the data and then you can upload it to your computer to give you the reading and a whole lot more to be able to take it to your G.P or specialist if you find a problem has flagged up on it. Most Doctors I have shown this are very fascinated by it - so far haven't had a bad response.
This particular one is similar to the Home Sleep Apnea test monitors that the hospital/sleep clinics use.
If you want more info on where etc - just send me a private message and I will give you more specific info
Thanks Andrea
Hi,
Although I have suffered from BD for over 12yrs, I am new to this site, but just wanted to say I also suffer from the chocking and also have extreme jerking of all limbs, stomach and head in my sleep, that wakes me up. This leads to terrible sleep deprivation symptoms during the day time. I didn't think it was related to BD, although I have mentioned it to my GP and consultant many times.
Abby
Hi Abby
I know just how you feel with this problem and although there isn't necesarily a connection to behcets. The result of your sleep deprivation can make the fatigue of the behcets quite intollerable.
I don't know how long yours has been going on, but mine was left untreated and has got worse over the years.
I think you need to ask your G.P to refer you to a sleep clinic where they can assess it and treat it if they can.
If you google NHS sleep study clinics and your area where you live it should bring up where your nearest one is. Print it off and take it to your G.P and ask to be referred. She/He would have to have a very good reason for saying no.....I am pretty sure he/she won't say no from what you are saying.
You can send me a private message if you need any other info or help
good luck
Andrea
Hi,
Thanks for your reply Andreafm, it's so good to talk to someone who genuinely understands what you are going through and not just nod thier head.
Having suffered from BD for 7 years and numerous visits to my GP, who referred me to the GUM clinic, many tests were carried out including HIV and Aids. I was being passed from pillar to post as they couldnt find out what was causing arthritis, temp, genital and mouth ulcers, I was even told by the health advisor that my husband had been sleeping around and I have caught Herpes from him. After many GP changes and suffering for 7 years I googled my symptoms and came up with & identified it to be BD. Funnily enough I came accross a website called ABDA and that is my first name (wierd or what). I told my GP that I think this is the condition I suffer from and after several tests this was confirmed. It has now been 12 years since I first started suffering from this condition. I still get severe bouts of ulcers, which leave scars on my tongue (not sure about down below). Just recovering from the worst ever mouth ulcers, couldn't talk, eat or drink liquids. Have been off sick from work for the past 12 weeks, lost so much weight, I had heard about manuka honey and started taking a spoon in the morning and evening. Hooray it worked my ulcers are getting better.
Luckily I met a Dr on visiting the GUM clinic and he prescribed me EMLA cream for my genital ulcers, it is fab, this is a local aneasthetic and numbs the area making it bearable to pass water and sit down.
I have had the problems with choking, and sleep for the past 6-7 yrs which has gradually got worse. I did get referred to the sleep clinic and had 2 tests for sleep apnoea which came back negative following this I gave up.
I am a strong willed individual, I work for Social services, and funnily enough assess people daily for different medical problems, most of the time when they are telling me about thier problems I can emphasize with them as a suffere of BD.
I have been told I need to take several medicines ie Azathioprine, Prednisilone, also have very dry eyes and post vistreous detatchmentwhich has started to affect my vision., but only take the painkillers to get rid of the pain and try to out herbal remedies, I only take the medication when I have a really bad flare up.
So many things that people take for granted eh !!
Abby
Recently diagnosed with Behcets - living in Ireland
Where to get a diagnosis
LDN low dose naltrexone
Slowly loosing my eye sight and worrying...
