Obstructive Sleep Apnea. The Side Effects Of Steroid Treatment. A Thank You To Papworth Hospital Sleep Clinic Staff.

The following is about my wife Linda's experience with a sleep disorder that developed, as a side effect, to a drug treatment for another critical condition. How this drug treatment, led to her stay in Papworth Hospital Sleep Clinic. Linda has an extremely rare eye condition,

Central Serous Chorioretinopathy or Bird-shot Chorioretinopathy.

A condition where she may lose her eyesight at any moment unless she takes some very strong drugs. The steroid Prednisolone and Methotrexate, a powerful anti inflammatory. The vector or cause of Bird-shot Chorioretinopathy is unknown.

Auto Immune Disease

It is thought it could be a virus or a bacteria which covers just about everything and nothing. The effects are seen when the bodies own immune system starts attacking itself.

The root cause of why this happened is unknown, whether it is from some kind of virus or bacteria is unknown. Linda doesn't smoke or drink and has always led a healthy life with a good diet. The only known treatment, we have been advised. Is to suppress her immune system with the steroid, and to bring down the inflammation in the eyes, with rheumatoid arthritis drug Methotrexate.

Trying to name this condition and explaining it to family and friends has been difficult. We really didn't know what Linda was dealing with. Nor did many of the doctors we have met. On 3 separate occasions the doctors themselves, had to look it up, in the medical books. It is a little disconcerting when a specialist eye doctor, reaches for a medical book?

Sleep Apnea Study At Papworth Clinic

The sleep apnea developed as Linda weight ballooned from the steroids How she tackled this side effect, is the subject of this story. With the help of the wonderful doctors, nurses and support staff of Papworth Sleep Clinic Linda began to get some much needed quality sleep. I wrote this and was unsure if it is something we wanted to share. I asked her if we should publish it, as I felt that it is quite a personal issue. Linda said, it should be published. The more people who know about this rare condition the better. So here it is.

Discovering There's A Problem

Linda had treatment for the condition back in 2005 and we thought that it was fixed. Her eyesight has been getting progressively worse in recent years. We put it down to the aging process, and so did the opticians we visited. I know it sounds silly, but we didn't make the connection with this earlier episode. It was by a pure fluke that it was discovered this time. A friend of our son Luke; Lisa worked at a lazer eye surgery. Optimax.co.uk

I mention their name here as without the Optimax examination , we would have never known there was a problem. There are of course many lazer eye companies out there. In our case we owe Optimax a debt of gratitude. Lisa said we should go along for a consultation. We may simply find that we no longer need to wear reading glasses. We put off going for weeks. as it didn't seem that important to us. Eventually after a few months we decided to check it out. Thinking it was just a routine thing.

The ophthalmic technician at Optimax on examining Linda's eyes, said.

'There is something really wrong here, you had better go to the hospital'

Linda was seen very quickly at the hospital. This is when we were told that her eyesight could have gone at any moment. Linda had been very lucky indeed!

So What Is The Problem Exactly

The doctors don't know what caused it or where it came from. Basically her own immune system is attacking the main arteries at back of her eyes. They cannot cure 'Bird-shot Chorioretinopathy ' but it can be checked and respond to treatment. Depending on when it is diagnosed. The treatment is a course of high dosage steroids Prednisolone and a drug called Methotrexate. These drugs are used in the treatment of rheumatoid arthritis, and some forms of cancer.

Linda had to undergo a battery of tests to make sure she was cancer free, As these drugs would accelerate any mutant or cancerous cells. These drugs it is hoped, will arrest the deterioration in her eyesight.

Not Breathing Is Not Normal

Linda became very ill from this course of chemo-therapy and her sleeping became very erratic and she would often stop breathing. I told her what was happening and like many people, she thought I was just moaning about her snoring; but I wasn't. This was different. We all snore from time to time and it can be annoying but this was way beyond snoring. She wasn't breathing.

I was really concerned about her stopping breathing and wanted to get her some help before something terrible happened. I kept nudging her in the night when she stopped breathing and thought, this is getting crazy. When she would stop breathing, after a while, a matter of seconds, her body would convulse and she would breath again. It was very scary to say the least. I knew I had to get it through to her how serious I thought this was.

Another Steroid Side Effect

The chemotherapy had scrambled her brains and she was almost completely non compos mentis (not of sound mind) and had been for months. She would often say 'but you have been stopping breathing and shaking for years' and I couldn't argue with that, as she had, been telling me the same things for years. I never thought it was a problem. I do now.

The chemotherapy was also affecting her ability to think and remember things. My wife is the kind of woman, who can tell what celeb is married to who, in the showbiz world. Linda knows everyone of 'my' families birthdays. Linda has an iQ of 140. She is no idiot. Her memory is what she is noted for in our family. To be losing this was like losing the 'core' of her being. She had some dreadful thoughts at this time. All I could do, was to reassure her, that it would all come right and she must just try to rest and relax. I can't really say I believed it myself. As the treatment wore on, she got weaker and weaker. Her mind was almost gone completely.

To see her struggling with this failing mental ability, made me determined to find out what I could about sleep disorders and pronto. I had quit working, as I couldn't leave her alone for safety reasons. Linda would leave things cooking until they burned, amongst other things. She simply forgot. Linda in fact started to set timers so that she would remember that something was happening and she used this method to remind her. It wasn't very effective as she would forget what the timer was reminding her of. We needed the time to find out how to deal with what was going on.

I Don't Know These People But Thankfully They Were There.

Not really knowing what to do, I did some fast research and I wrote a hub on snoring and showed it to her. As a teacher I know the written word sometimes has more power. A glimmer of understanding, eventually seemed to trickle through the fog, to her failing consciousness. My internet research also showed me how little was known about this disease. We were at this time just dealing with the sleep issue. I thought I could find out more about the underlying disease when Linda was more stable. I have since searched and found very little information. What I did find is linked at the bottom of this article.

I kept showing her the hub on snoring, as the comments started streaming in from hubbers. I was shocked at how widespread this snoring problem is and how potentially dangerous. Linda was still traumatized and coming to terms with the fact that, the Bird-shot problem may make her blind. Fortunately Linda couldn't make the connection that the treatment she was on, had the potential to kill her too. This is the proverbial rock and a hard place and her decision making was virtually non functioning.

Papworth Sleep Clinic

I got her to the doctors and on my insistence he sent her to the sleep clinic at Papworth. We visited Papworth and the staff were friendly, welcoming and top notch. They knew exactly what Linda needed to do. We went home with a sleep monitor and the next day returned to papworth sleep clinic to see what the device had recorded. Sure enough it recorded that she had stop breathing 19 times in one hour, and this pattern had repeated all night.

Overnight Sleep Trail Begins

Linda was booked into the clinic overnight and hooked up to all sorts of machines and highly monitored all through the night by the dedicated staff and recording machines. She awoke a few times and found nurses adjusting the devices and machines and they just smiled, as Linda had a mask on and couldn't talk. All night she drifted in and out of sleep. What the nurses had been doing on their visits were taking readings and adjusting the air flows on the machines to suit Linda's needs.

Data Collected And Assessed.

The next day the Doctor told her in a very calm and caring way that she did indeed have sleep apnea and that it was a potentially dangerous condition, that must be treated right away. His calm professional approach reassured her that it would be good for her to try a breathing device at home.Linda was a little horrified by the prospect of having to be hooked up all night to a breathing apparatus but conceded that she would try it. Psychologically it is very hard to accept that you need this kind of thing, when you have always thought of these devices are for people with serious diseases.

Summed up. This is what Linda is dealing with.

She may lose her sight. The drugs can be lethal. The side effects cause other life threatening conditions. i.e. Sleep apnea, Liver failure, Kidney failure amongst many other side effects. Trying to explain this to people has been difficult to say the least. The only outwards sign that something is wrong in Linda's weight gain and that she has no energy. Some well meaning people have suggested all kinds of weird remedies but they just cannot grasp what is happening. The realization took time to penetrate her foggy thinking processes, that she was indeed one of those people.

They issued her with a C-pap machine and from the first nights use, she has slept soundly with no problems. The C-pap machine forces air under pressure into her nose and so she sleeps soundly. It works by creating a continuous positive airway pressure delivered via a mask.

The Results Were Incredible And Immediate

The immediate effect was startling. She awoke the next morning and was up and alert, she had been sleeping until midday and later prior to using the C-pap. Within a week she was cooking and tidying around the house and just generally alive and almost fully functioning again. Her memory was improving too. As she is now getting a good nights undisturbed sleep the effects of the Chemo while still draining her energy at least she has some energy now to drain. Linda can go out and about again and she has more energy. She still cannot do too much but it is amazing to watch her coming back from the brink. She is one tough cookie.

Linda was fading fast. I thought I was going to lose her. Now she is up with the larks and getting stronger every day. She will be on the methotrexate and the C-Pap machine probably for the rest of her life. I am just thankful we may just have caught it in time.

As I mentioned at the beginning on this story. Linda has an rare eye condition Bird-shot Chronoretinopathy. A condition where she may lose her eyesight unless she takes some very strong drugs. The steroid is Prednisolone. The Methotrexate is a powerful anti inflammable. The problem with this kind of rare condition, is that virtually nothing is known about it and treatments seem to be experimental at best. Again the cause of Bird-shot Chronoretinopathy is unknown.. The effects are seen where the bodies own immune system starts attacking the body.

In Linda's case it attacked her eyes.

The root cause of why this has happened is also unknown, whether it is from some kind of virus or a bacteria is unknown. The only known treatment that we have been able to find is the treatment Linda is on. To suppress the immune system with the steroid and bring down the inflammation in the eyes with the methotrexate. Methotrexate is often used for the relief of rheumatoid arthritis.Linda began the drug treatment in early March 2011 on a dosage of 40mg of the steroid Prednisolone. Followed by the introduction of Methotrexate in June combined with Folic Acid and at the same time as the reduction of the steroids.

There is a fine balancing act between these two drugs. Linda has to have blood tests every month to check several indicators. Liver function, bone marrow and white blood cells. Going back to the end of the first month on the drugs, They started to kick with a vengeance. The effect was that Linda was immediately bedridden. It just got worse from then onwards. We really didn't understand what was going on and had the good sense to re-read the instructions that came with the medicines.The list of side effects, told us that there may indeed be a loss of energy, memory loss and depression.

Among many other side effects. Linda seemed to be having all of them. It gave us little reassurance, that it was the drugs causing these side effects. The effects began gradually to worsen over the next few months.Trying to explain to people was fruitless, as we really wasn't sure what was going on either. We were fire fighting and losing.

This is when the sleep issue first became apparent.

By the time we got to Papworth, Linda was literally on her last legs. She slept many hours per day and would only get up for short periods. On top of this horrendous drug treatment for the disease. The effect on Linda's mind was to cause her to be become depressed. To be told that you are going to lose your sight is bad enough. And the only treatment available will make you very ill.

She was entitled to be depressed.

Linda has always been an upbeat positive person. To see this downturn was very disturbing. Ironically I have lived with depression my whole life! For once it was helpful. At least here was something I did know about. I supported Linda as best I could, through some very dark moments. She is working through it, without having to take anti depressant drugs. Recently we returned to the doctor for the results of the treatment. Unfortunately it has not been completely successful.

Both eyes are still affected.

Linda's right eye has responded better than the left eye, which is still leaking (known as logging). The doctor has now injected the steroid into the eye socket itself. If this doesn't work, then the next option, is a an injection of steroid, directly into the eye itself. This particular doctor has not got the best bedside manner. She just blurts things out, without much thought for the patient. Linda began to cry waiting for the injection in the eye socket. The nurse comforted her, while the doctor prepared the injection. I said to Linda 'it will be okay, don't worry' at which point the doctor asked why Linda was crying? I was incensed and said calmly. 'it's not everyday, that you are told, you are going blind, and that the hellish treatment she has been on, has counted for nothing'

It seemed to dawn slowly on the doctor, that Linda was a human being. Not just a bunch of symptoms. She reassured Linda, that they were going to make sure, she didn't lose her sigh. In all fairness to this doctor. The treatments are limited. Doctors want to be able to 'fix' problems. When they cannot it must challenge them too. Linda sank into another short depression after hearing this news. We are adjusting to these new circumstances. We are dealing with it. Linda knows she is depressed, and is positive about coming out of it. We have started our fight back, by going for short walks in the surrounding countryside. Linda is tough and she is a fighter.

Thank you for reading. I know it was long and I appreciate your determination.

Update 19th April 2012.

Finally some very good news. The arterial holes in Linda's eyes are finally responding to treatment and appear to be healing up. See picture above. The artery looked like a fishing net before full of holes. They are healing. A huge thank you to everyone who has helped over these very difficult months. A very special heartfelt thank you to Lisa and Optimax without whom, we may never have caught this in time.