13. My suggested way forward.

From my research on Post Herpetic Neuralgia I found a very useful medical journal article about its possible treatments. One of the main points the article made was that it was rare for patients to respond to a single therapy and that a simultaneous multi drug approach would be more successful.

I therefore went to my doctor with my hypothesis and the article information and discussed my findings and asked that I be prescribed the medication to try the multi drug approach described in the article.

My doctor certainly appeared to consider that my explanation as to why I was suffering from CFS was a reasonable theory. However my doctor was initially reluctant to prescribe all three drugs at once, indicating that we would not know which were helping and also there was the problem that the strong pain killer Tramadol mentioned in the article is an Opioid based drug and so has the potential to become addictive. I persisted pointing out that by that time I had already not worked for four years, so perhaps a more radical action was required and by now my doctor should know that I am logical and sensible about taking medication.

He agreed and prescribed the following three drugs:-

Gabapentin which I was already taking and appeared to be improving things for me slightly.

Tramadol is a strong (Opioid based) painkiller.

Amitriptyline is an antidepressant which I had already tried on its own without much improvement.

My doctor indicated that I should start taking just the Tramadol with the Gabapentin tablets I was already taking and see how I got on with these tablets for a week or so and then also start taking Amitriptyline. In this way I would at least know which drug may have caused any side effects.

We also agreed how many of each type of tablets I could take and how I could try varying the dose of each tablet one at a time in an attempt to find the best combination for me.

When I started taking the Amitriptyline tablet, which was just one very low dose at night, I noticed that I felt tired the next day. So my doctor prescribed Nortriptyline another antidepressant which had been shown to help relieve PHN.

Go to Part14. More progress, I did some work!

12. My own hypothesis.

My research of Post Hepatic Neuralgia indicated that in my case the Shingles outbreak would have travelled along the Trigeminal nerve on the upper right side of my head. It is the disruption of the Trigeminal nerve due to the progress of the Shingles virus, which can give long term severe pain from the nerve damage that is caused.

On what might be an unrelated track of my research I found out that people with Cluster Headaches, which I believe also involves the Trigeminal nerve and a part of the brain called the Hypothalamus, experienced nasal discharge on the side of their head where their headaches occur. So my reasoning went that perhaps the disruption to my Trigeminal nerve is causing the sinus stuffiness and headaches I have on the right side of my head.

I also read that the Modafinil drug I had tried without success, which had made my headaches and tinnitus worse, is thought to act upon the Hypothalamus.

My understanding is that the Hypothalamus is a small area at the base of the brain. It links the nervous system to the endocrine system via the pituitary gland, which basically means it is the area that allows the nervous system to send out signals via hormones (i.e. the endocrine) system. It is the Hypothalamus that controls body temperature, hunger, thirst and circadian cycles i.e. the sleeping and waking cycle.

So the following is my suggested hypothesis for my condition:-

1. I had Shingles on the right side of my head.
2. The Shingles virus has probably upset or damaged my Trigeminal nerve on the right side of my head. I still have some odd sensations on the scalp and forehead on the right side which I believe are from the Shingles outbreak.
3. A consultant neurologist has diagnosed mild Post Herpetic Neuralgia as a result of my Shingles.
4. The upset/damaged Trigeminal nerve is possibly causing/triggering the discharge in my right sinuses causing the stuffiness in my sinuses on that side.
5. The upset/damaged Trigeminal nerve is possibly causing/triggering the headaches I am having on the right side of my head.
6. The upset/damaged Trigeminal nerve is possibly causing/triggering some reaction in my Hypothalamus and/or the surrounding area of the brain. I have symptoms of fatigue/tiredness and sweating that are things the Hypothalamus has control over.
7. Taking Modafinil, which is thought to work on the Hypothalamus made my headaches worst.
8. My testosterone levels might be lower than they used to be and the Hypothalamus via the Pituitary glad controls hormone levels. Perhaps a lowering of my testosterone level could be the reason why I feel more emotional at times.
9. My Tinnitus is on the right side of my head so perhaps somehow this might be related to my other symptoms, certainly when my headache gets worse my Tinnitus can get worse.

Go to Part13. My suggested way forward.

11. A possible turning point?

So there I was at the middle of 2006 with a diagnosis of CFS, four years of not working due to ill health and nothing other than relaxation instructions and advice, which was basically learn to live with it and it might improve over time.

I have this horrible feeling that at this point there might be many people with CFS that would just get forgotten about and left to try and cope as well as they can with their symptoms.

There were no suggestions from my doctor for anything else to try.

For me however, I was and am determined to find the cause of my CFS. My thinking is simple, if I have a problem then something must be causing it, don’t just live with it, find and fix the cause if it is possible.

I looked back over all the letters from the consultants and the research I had done to see what I could find. In the letter from the first Neurologist I had seen at the start of 2006 it had mentioned that I might be suffering from a mild form of Post Hepatic Neuralgia (PHN), as a result of my Shingles outbreak. In the letter the consultant suggested trying Amitriptyline or Gabapentin. I went back again to my doctor and discussed the comments made by the consultant and as I had already tried Amitriptyline we decided that I should try Gabapentin.

Gabapentin is an anticonvulsant which has been shown to relieve the pain of PHN.

I started taking Gabapentin and it took a while but I started to think I was seeing some improvement. My headache had not stopped but I thought my general mood had improved. I was also taking other normal headache tablets to try and totally eliminate my headaches without success. I continued taking Gabapentin for about two months, slightly varying the dose within the limits set by my doctor to try and find the level giving the most benefit. I used the daily charts I described earlier to try and help me gauge if changes in medication had improved things or not.

As I felt I was starting to see some improvement in my CFS condition due to my new medication, I decided to research Post Hepatic Neuralgia further.

Go to Part12. My own Hypothesis.

10. See how time just slips by!

So again a month or so later I went to see the Psychiatrist. After an hour’s consultation his conclusion was that I was not nuts (my words) and that he agreed I was suffering with CFS. Regarding the Modafinil drug, it turned out that he had not used it but would read up on it and write to my doctor about his findings and his recommendation for this drug.

Whenever I have seen any of these consultants, I have asked that they also send me a copy of the letter that they send to my doctor after each consultation. They seem happy to do this and it has helped me to feel in the loop, and if I had not done so I believe they would simply have just sent the letter to my doctor.

The letter came and confirmed what I had learnt from the consultation and also indicated that a trial of Modafinil would be a worthwhile experiment. Initially my doctor was reluctant to prescribe Modafinil due to its cost but we agreed a very small quantity might be worth a try. So I was given enough for two weeks. After one week on Modafinil I had to stop taking it as I was getting no benefit from it and it was making my headaches and tinnitus a lot worse.

Perhaps by now you can see how the weeks slip into months and the months slip into years, during all this process. Meanwhile there is no permanent improvement in my condition just periods when I might feel a bit better and then other times when I might feel a bit worse.

Go to Part11. A possible turning point?

9. Yet more research suggests something from my past.

Again I decided that I needed to do more to try and help myself to solve this fatigue problem, so I did further research. As a result of this research I arranged via my doctor to go and see a Neurologist Consultant to see if they had any views on whether my CFS could have been caused by my earlier episode of Shingles as I had read that CFS is thought to be brought on by some viruses. In fact CFS can also be referred to as Post Viral Fatigue Syndrome (PVFS).

There was also another surprising thing I discovered that I felt needed investigation, which was something called Post Polio Syndrome, which can give fatigue symptoms. This was interesting and news to me (and to my doctor who had never heard of Post Polio Syndrome) as I had contracted Polio when I was a child at age seven. Fortunately, if you can say it like that, my Polio was restricted to one leg. At no time in the past had anyone said to me that in later life this weakening of my leg or some other effect of having had Polio might give me other problems.

So it was surprising to read that it was also possible that the Polio virus could have travelled up the spinal core and damaged the brain, which in a young person would not show itself, but in later life might start to become apparent.

This is one of the problems of doing your own research; you have to be careful not to think you have everything wrong with you. That is why I only go to my doctor when I think I need some advice and why my doctor then referred me to the Neurologist Consultant to explore this possibility.

Polio is a very uncommon thing these days and many doctors have no direct experience of it or its long term effects. The Neurologist gave me a thorough examination and made the comment that I might be suffering from a mild form of Post Hepatic Neuralgia as a result of my Shingles outbreak due to the ongoing problems I was having on the right side of my head, which included ongoing headaches on that side of my head.

Regarding the Post Polio Syndrome question the Neurologist thought it was unlikely as there was no sign of any neurological problem, but the Neurologist referred me to another Neurologist who might have more experience of Post Polio Syndrome.

A month or so later I saw the second Neurologist who also gave me a thorough examination and also concluded that there was nothing to suggest that I was suffering from Post Polio Syndrome. The Neurologist decided that some other tests would be useful so another month or two went by and I then had a Lumber puncher, which is where they take some fluid from your spine, and an EEG, which is when they put all those electrodes on you head and analyse your brain waves. The actual procedures were not a problem, the only thing you should expect after a Lumber puncher is very bad headaches for a few days until your body has replaced the small amount of fluid that they removed.

At the end of these tests the good news was they could find nothing wrong; all the tests had been okay.

The only thing suggested by the Neurologist, and this might have been also as a result of one of my questions, was the possibility of trying a drug called Modafinil which enhances wakefulness, but the Neurologist felt that I should see a Psychiatrist consultant that he thought would know more about this drug.

Go to Part10. See how time just slips by!

8. The CFS clinic.

The Endocrinologist consultant who diagnosed my CFS referred me to a new CFS clinic that had just opened at my local hospital. I had to wait several months for an appointment and finally saw a Physiotherapist and a Psychologist who then decided that they could not provide any specific help; they simply referred me to their Occupational Therapist colleague.

Again I was going to have to wait several months before seeing the Occupational Therapist. So I decided to also do further research while waiting.

In consultation with my doctor I decided to stop taking the Amitriptyline as it had not solved my sinus congestion problem.

I am somewhat skeptical about natural medicine remedies etc, probably because of my analytical background I like to know there is a scientific proven benefit to things I take or try. However, I was becoming more willing to try anything that might help, so when my research suggested acupuncture might help I discussed this with my doctor. His reaction was like mine that it would do no harm to give it a try and initially he referred me to a physiotherapist at a local hospital who did acupuncture. The physiotherapist contacted me and indicated that she only used acupuncture to help some of her patients’ pain problems and had never used it to help with CFS so she felt I should find a more suitable acupuncturist. Fortunately I managed to get a list of local acupuncturists and on the list was a local GP (general practitioner) doctor who also provided an acupuncture clinic.

I saw this doctor and after an initial consultation he gave me four acupuncture treatments which meant I had needles placed in my feet, hands and head. During this period I felt no benefit and may have felt a bit worse, so it was decided that I was obviously not getting any help from this treatment. Another blind alley, but I was still determined to keep on looking for a solution.

Finally in January of 2006 I saw the Occupational Therapist who after discussing things with me, suggested that I kept a log of my activities and noted when I became fatigued. The aim was to determine what I could do and then try and only ever go to 75% of these activities i.e. never to get to the point of being fatigued. I tried to do this but found it difficult to determine levels as things seemed so variable. I was also given a relaxation/meditation CD, which I should use daily to help me relax.

I continued with the logging idea mentioned above but changed what and how I did the actual logging. Rather than writing down what I did at different times of the day, which to me just seemed to end up with pages of words from which it was difficult to see any trends or patterns, I initially simply produced a chart where there was a column for each day and the column was divided into hours. I then used colours to just show my activities, so:

• Red - indicated physical activity such as doing a job around the house or walking etc, i.e. not sitting around.
• Green – indicated mental activity like watching TV, reading, working on PC i.e. sitting around.
• Yellow – indicated resting such as just laying down, perhaps listening to my relaxation CD etc.
• Blue – indicated actual periods of sleep.

This was initially useful in showing me that my worst times were the mornings and that I might go through phases when I might sleep more in the mornings one week compared to the next.

I then felt I needed more data from these charts so I changed it so that not only was there a column for the day as described above, but there were also columns for my main symptoms of Headache, Tinnitus and Tiredness with a final column used to record if and what medication I took. In the symptom columns I simply recorded a value in the range 0 to 10 (where 0 meant no symptom and 10 meant the symptom were very bad). One of the things I gained from this initially was the fact that I could never score 0 for headaches and I had never fully realised that I always had some level of headache albeit very mild sometimes. This chart proved to be useful later as I tried other medication in helping to determine if they had helped improve things.

Go to Part9. Yet more research suggests something from my past.

7. Finally a diagnosis of CFS.

I started to do more research of my own on the internet and in mid 2005 I went to my doctor asking if my condition could be Chronic Fatigue Syndrome or Adrenal Fatigue. I was referred back to the Endocrinologist consultant I had seen earlier and at the same time was put on a low dose of Amitriptyline another antidepressant. The dose of Amitriptyline was well below the minimum prescribed if you were taking it for depression and the reason I was taking it was for one of its side effects, which was to dry out my sinuses.

After another test of my testosterone levels and for Adrenal fatigue the Endocrinologist consultant finally gave a diagnosis of Chronic Fatigue Syndrome. As I am sure others would testify, finally having a diagnosis is good in that at last others agree there is something wrong with you.

However, if you are familiar with Chronic Fatigue Syndrome you will know there is no specific test for the condition; it is basically a diagnosis arrived at by excluding other possibilities. You may also know that having been given the diagnosis of CFS that does not mean that now there is a course of treatment to be followed to cure you, as currently there is no specific cure for CFS.

One thing I feel sure about is had I not done my own research and done nothing, I would still either be undiagnosed or a diagnosis would have been a lot longer in coming. So if you are in a similar situation I would strongly suggests that you or someone close to you does further research to keep offering suggestions or questions to your own doctor. It also helps as in my case that your doctor should be open to such suggestions or questions.

Go to Part8. The CFS clinic.