I had three head injuries the first in 1972, when I was in an accident whilst driving a truck; the second was a violent assault in 1985 when I had a basal skull fracture. Finally in 2003 I was involved in a fight in Puerto Banus Spain, when I was held for some time in what I now know was a “Choke Hold” http://en.wikipedia.org/wiki/Chokehold. This is a devastating manoeuvre and I
passed out for 10 to 20 minutes, I spent two days in bed and then made my way back to the UK feeling very poorly.
After this I began to suffer from right neck pain from spondylosis, dizziness when I turned my head, attacks of acute vertigo with vomiting (though these subsided), general aches and pains, particularly in my face, and tingling and numbness in both hands. To these symptoms were added tinnitus and deafness in my right ear, and headaches. I did not sleep for more than three hours a
night, awaking unrefreshed and suffering fatigue during the day. My GP just told me to go on holiday.
Things could have been different if details of my head injuries had been recorded on my medical records adequately. Many consultants from the various medical disciplines that have treated me since 2003, have also ignored the serious impact of a “choke hold” and the impact on my brain and
the effect of head injuries on a person’s health. Testing methods used throughout have been suspect and there has been much mismanagement of my care, a terrible waste of resources for the NHS and when you think about it taxpayers money. Not to mention the devastation to my life that has caused such pain and heart ache for me and my family for the last 11 years.
This was the start of a long journey that led me down some very dark roads. I went on to spend a large amount of money chasing for a solution to an answer to my many medical issues knowing that I was a fit and healthy person until that incident in Spain. Along the way I obtained diagnoses of Menieres symptoms, hypothyroidism, CFS/ME, cervical spondylitis hypopituitarism and severe sleep apnea with central involvement and all the issues that accompany these complaints. For many years now, I have seen countless people regarding these problems. However, I will try to concentrate on the sleep apnea aspects of ‘My Story’.
After several visits to my GP with no improvement I asked for a referral to see a consultant in Acute Medicine & Rheumatology with a special interest in ME/CFS and paid for my first consultation in October 2003.
If only more had been done when in 2007 I paid to see a cardiologist who also had a special interest in ME/CFS whose “Clinical Impression” was chronic fatigue syndrome probably associated with sleep deprivation. I feel my health would not have deteriorated so badly, I may not have suffered atrial fibrillation when taking different medications or when my body was put under stress.
As much as I tried no one in the medical world would take notice of the sleep issue or my endocrine problems. In March 2008, desperate for help I went to another private hospital and it was suggested that a Sleep Apnea Study would be useful, unfortunately by then I could not afford to pay for this. Since receiving treatment for hypothyroidism in 2004, I had on and off suffered atrial fibrillation when my dosage of thyroxine was increased to more than 100mcg. In 2008, I read an article by Dr C Shepherd who also has a special interest in ME/CFS about CFS & Thyroid Function. It explained the problems for patients with secondary hypothyroidism (caused by problems with the pituitary or hypothalamus glands in the brain). It explained the necessity to test for cortisol deficiency before thyroxine replacement was started, because people could develop potentially serious (even fatal) heart rhythm disturbances such as atrial fibrillation.
I queried this with the cardiologist and endocrinologist who were treating me, they considered there was no problem. Unfortunately, I ended up in A & E with atrial fibrillation and had an AV node ablation and a pacemaker fitted.
By July 2009, I was even more desperate and turned again to the first cardiologist and asked him if he could help me in my pursuit to get a polysomnography test and hence a CPAP machine. He suggested an overnight oximetry test.
In 2009, an endocrinologist discovered the seriousness of my endocrine issues, I had hypopituitarism, which confirmed Dr Shepherd’s findings about thyroxine/cortisol and atrial fibrillation. However, by then doctors had prescribed mind bending drugs, which were having a due to the sleep apnea and I was referred to a psychologist.
January 2010, I was referred to a Consultant Chest Physician. After seven long years I thought I was getting somewhere, but both oximetry tests that I had were hampered by palpitations and the only help I was given was a snoring leaflet! In April, so desperate I paid to see the cardiologist again.
February 2011, I had an EEG, which showed intermittent slow wave activity localised to the temporal regions.
Mid July 2011, I was even more desperate; I had researched traumatic brain injuries and decided I needed to see a neurologist. I paid to see him as other consultants at the NHS Hospital where he was employed knew the fight that I had with sleep deprivation and thought a neurological opinion would be very useful and were interested to see the out come. However, the most important thing for me was I had discovered he did more extensive sleep studies including overnight polysomnography tests.
At my first consultation the neurologist detailed my problems: Spinal tremulousness, Low mood/ depression,Chronic fatigue syndrome, Previous skull fracture, Partial anterior hypopituitarism, Ménière’s disease, Renal cysts, Previous testicular operation – parasite infestation ? Atrial
fibrillation – oblation with permanent pacemaker insertion , Neck pain with paraesthesia’s in right hand. He offered to see me in future as an NHS patient, I thought to have a polysomnography test.
When I first saw the neurologist my pace maker was not in use, my heart had returned to sinus rhythm and it was not needed, but by September I was admitted to A & E in fast atrial fibrillation,
thought secondary to T3 treatment which was subsequently stopped.
October 2011, I saw the neurologist again, he was keen to arrange MR scanning of the brain and neck, and the cardiologist who had been treating me had offered to replace my pacemaker with a MR compatible model. I asked him if he would consider a CT scan instead; his reply was he did not want to expose me to radiation.
March 2012, I was still waiting and the neurologist wrote, he and the cardiologist had come up with a plan to try and withdraw the pacemaker such that he could arrange for the MR scan.
April 2012, the pacemaker was replaced by a suitable MR compatible pacemaker.
September 2012, I at last saw the neurologist, unfortunately the MR scan result had not been reported for several months, it had been filed on an alternative computer system. The result was normal. He was pleased to reassure me I did not have multiple sclerosis!
He noted I still had sleep problems, and suspected there had been disruption to my sleep pathways with the injury. He also commented that since the change in the pacemaker I was experiencing palpitations, but still did not arrange a polysomnography test instead hormonal therapy and the purchase of a light box was suggested. I was severely stressed because the test which could confirm his findings was still being denied me, instead he had decided to retrain my brain.
A few days later the problem with my heart beating so fast (atrial fibrillation) was now so bad that it was arranged for me to again have another AV Node procedure in October. The cardiologist noted that I was now pacemaker dependent.
October 2012, the neurologist saw me again and noted a few days previously I had had tunnel vision with a headache, it was migrainous sounding and he reassured me that I had not had a stroke. Finally, after yet another year of unnecessary suffering he decided to request a polysomnography.
January 2013, the Sleep Clinic advised the polysomnography showed severe obstructive sleep apnea, although some of the apnoeic episodes appeared to be central. The number of apneas on the study would be sufficient to attribute to my fatigue. The Sleep Clinic provided me with a CPAP
March 2013, the CPAP machine was not working, I did not know what else I could do and returned it and the neurologist planned to discharge me. I had asked to be transferred to another hospital previous to this to try and have all my treatment under one hospital.
There were problems with the transfer and by July 2013, I was again under the care of the Sleep Clinic and started another trial to auto-titrate the CPAP machine. Fortunately, now an interested and caring doctor was overseeing my treatment at the Sleep Clinic.
In October 2013, I was still waking with severe pains in my head and abdomen, my ears screaming with tremors throughout my body; it felt like torture. I asked for a second neurological opinion and started to follow the NHS complaints procedure about the treatment I had received for my sleep apnea.
December 2013, I was provided with a more sophisticated CPAP machine (ResMed S9 AutoSet & S9 Elite), but it is early days and my problems have not resolved my desire for sleep continues. However, now arrangements are being made for another polysomnography test, this time whilst I am using the CPAP machine to try and establish what is going on.
My complex health problems are still ongoing and ME/CFS according to the World Health International Classification of Diseases is a neurological condition. I am desperate for a second neurological opinion, because I do not feel my body can struggle a lot longer and have now made arrangements to see a neurologist privately, who will hopefully then see me as an NHS patient.
19 January 2014