Another Diagnosis - Chronic Migraine!

It has been a very long while since my last post, and until recently nothing much had changed.

I had stopped taking Tramadol (a strong Opioid based painkiller) as I didn't think it was a good idea taking it long term. I then discovered that my symptoms did not worsen when I stopped taking the Tramadol, so perhaps it was not helping much anyway!

I was still finding that Gabapentin appeared to be improving things for me slightly.

As I was not only feeling tired each day, but I also had a headache every day all day, I asked my doctor if I could see a headache specialist.

I have now seen the headache specialist and he diagnosed me with Chronic Migraine! He also did not appear to think that I had Post Herpetic Neuralgia or Chronic Fatigue Syndrome, which were diagnoses I had received in the past.

You can imagine my confusion at yet another different diagnosis!

The interesting thing from the headache specialist was that he indicated that Gabapentin was the treatment he wanted me to follow. I apparently was not taking enough to get the full benefit from this drug and even at a higher dosage it would take weeks before hopefully I would see some improvements.

I had been taking 900mg of Gabapentin a day, but I was now to take 1800mg or 2400mg a day and wait for around 8 weeks to see any improvement.

I am currently taking 2400mg of Gabapentin a day, can't see much improvement in my headaches, I am not so tired (get up earlier, don't sleep very often during the day), but my Tinnitus seems worse! So some improvement but not in the expected headache area!

The headache consultant has told me to continue with the Gabapentin and if need be in a few more weeks time I could increase it to 3000mg a day!

It's all very confusing and frustrating; I just keep trying all these different things hoping that eventually I will feel better.

I will try and remember to update this blog in the near future to let you know how things are going with the new diagnosis and treatment.

Dark Chocolate helps CFS!

It has been a while since my last post as I have been spending most of my time working on my website business idea that I briefly mentioned in my “15. Not a cure but things are getting better.” post.

I also had a cold and my sinuses stuffiness problem returned after my cold had gone, so I started taking the very low dose of Nortriptyline again for a while and this appeared to help dry out the sinuses again.

So basically not much has change on my CFS health front.

I have tried to do some more research on CFS and my theory that Shingles is the cause for my CFS, but I still need to do more research on this topic. One thing I came across that I think I will be trying is a report titled “Chronic Fatigue Syndrome Symptoms Reduced By Dark Chocolate Consumption” ! The report suggest that dark chocolate which means chocolate with a high cocoa content and without any milk in it, may have an impact on levels of serotonin in the brain.

I will let you know how this test goes, but whatever the outcome it sounds like a good excuse to have some chocolate all be it dark chocolate.

16. What next?

I will continue with the current treatment I mentioned earlier, but I will also continue to research other ways in which I might reduce my Post Herpetic Neuralgia symptoms or somehow repair or sooth my upset or damaged Trigeminal nerve. I will also keep on researching Chronic Fatigue Syndrome (CFS) so that I can try and keep up to date with any new discoveries etc on this topic.

I am also interested in finding out more about the Hypothalamus and the surrounding area of the brain. I believe it may well become apparent that it is some impact or change on the Hypothalamus area of the brain that causes changes in the equilibrium of our systems and hence CFS. As I indicated earlier it is the Hypothalamus that controls body temperature, hunger, thirst and circadian cycles i.e. the sleeping and waking cycle. As these are things that change when you have CFS (i.e. I slept and sweated a lot etc) it seems reasonable that this could be a potential area for the problem.

I have read of a treatment, which appears to suggest that via just counselling it is possible to retrain or reset the Hypothalamus to its correct settings. But as there have been no clinical double blind trials of such a treatment I am reluctant to part with money to give it a try. There are many ads out there stating that they have the treatment or drug for the CFS condition, that it would be easy to waste a lot of money for no benefit.

So I would be interested to hear from anyone who has gone through or thinks they are going through the same story as mine i.e. CFS from Shingles. I would be particularly interested in hearing about any treatments that have been successful.

I will try and add more posts to this blog over time to keep you updated on progress, but there may well be long periods between posts as this could still be a long slow journey.

Hope you found/find this blog interesting and useful and if you are a CFS sufferer don’t give up keep believing things are going to get better.

15. Not a cure but things are getting better.

It is now late summer 2007. I am continuing with my medication for PHN and in turn I see an improvement in my CFS symptoms.

I now only take Gabapentin and Tramadol three times a day and have stopped the Nortriptyline as I could not detect any benefit on my symptoms.

I rarely sleep in the day and can work for reasonable periods on my computer at home.

I am trying out some ideas for making some money via the internet. I read a book called “The Super Affiliate Handbook: How I Made $436,797 in One Year Selling Other People's Stuff Online.”. This book gave me some ideas as to how I might make money on the internet, so eventually I bought some web hosting (if you are interested click the following to take a look at Lunarpages basic web hosting plan) so I could try out some ideas and learn more.

Also as it is just me trying out these internet business ideas I can go at my own pace and keep the effort and stress low.

I already have a website setup and have been learning a lot, which is one of the things I enjoy.

This is not meant to be a quick get rich activity. My initial goal is to cover any costs involved with hopefully a little extra cash coming in, but time will tell.

So as I indicated at the start of my blog I wanted to explain what happened to me, how it took a long time to get a diagnosis of Chronic Fatigue Syndrome (CFS) and how it would have been easy just to accept that nothing could be done and possibly just get forgotten about by my doctor.

It has been my own determination not to accept that nothing can be done for my Chronic Fatigue Syndrome other than learning to just live within my CFS limits, that has resulted in me finding what looks like the most likely cause of my CFS i.e. Post Herpetic Neuralgia (PHN) from Shingles. Having found this likely cause I then researched and pursued the treatment for Post Herpetic Neuralgia as a potential treatment for my CFS.

It is true this has not resulted in an overnight cure but I believe I have made more progress in this last year because of the treatment I am following. I believe the reason it is not an overnight cure is because I still have the ongoing problem that my Trigeminal nerve is still upset or damaged from the outbreak of Shingles.

Go to Part16 What next?

14. More progress, I did some work!

In November 2006 I started taking the three drugs Gabapentin, Tramadol and Nortriptyline for Post Herpetic Neuralgia. Over the following weeks I modified the dosage of each drug I was taking to find the minimum amount I could take for the maximum benefit. This was not an easy process as things changed slowly (no overnight cure) but I believed I was making progress. I used my charts that I mentioned before to help me decide if the changes in the drug dosages were helping or not.

As you may recall I mentioned that due to my ill health I had been unable to work, so I decided to do some research to see if I could earn some money via the internet. As a result of this research in mid December 2006 I started to do some part-time work, helping someone I had been introduced to who was trying to develop a website for one of their clients. This was ideal for me as it was to be part-time work I could do mostly from home using the internet.

In the end the project became more complex and had a number of technical problems which meant I worked on it more and for longer than I had anticipated, but I did it!

This piece of work proved very useful as it showed me that I could do some useful work, but it also showed me that I was still not well enough to consider going back to fulltime work. I also noticed that any stress also made my symptoms worsen slightly.

So although I knew I could do some useful work, I also knew it was going to be difficult to find suitable part-time stress free work.

This is why I returned to my idea of trying to see if I could make money from the internet.

Go to Part15. Not a cure but things are getting better.

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.