Over the last couple of weeks I have joined various online epilepsy groups to learn about people’s experiences as well as discovering lines of experimentation which could be beneficial. It’s fascinating to uncover the varying reactions to meds, triggers, seizure types, regularity and so on and so forth. It really is such an individual response.
For many there comes a point where desperation sets in. I too can relate to this. As soon as I hit puberty and the hormones started to party the seizures that had been controlled by nutrition, massage, acupuncture and homeopathy began coming fast and furious. Tonic clonic’s (grand mals) happened most nights or rather mornings between 4 and 7am. My fear of sleeping was so great I dreaded night time from mid-afternoon onwards. As it got closer, I would psyche myself up to accept it was bedtime and with every minute that went by I would be a moment closer to the inevitable.
Bedtime became quite the focus of my day. The lights on the landing would remain on till I fell asleep, my door was open and I liked to hear my mum and dad bustling about downstairs as it made me feel that I wasn’t alone. I listened to music to occupy my mind and had my beloved globe which lit up (best Christmas present ever!). I would spend plenty of time looking at it trying to remember where all the countries were located. For what it’s worth all of that observation didn’t do me any favors as my geography isn’t great and my sense of direction is shocking! However, that being said, I can always tell you where Chad is as it was the country I always looked for.
With the morning intrusion I would always be too frightened to sleep on my own, so I ended up sleeping in my parent’s bed. Not something that I would normally admit to but as my blogees (if I may use that term!) are a broad bunch some could potentially find comfort in this. My honesty knows no boundaries. It reached the point where I ended up abandoning my own bed completely due to their frequency. With the impending transition to high school I was physically exhausted and I couldn’t continue functioning in that manner and something had to change.
Since then, I have continued using various complementary therapies alongside the medication to relieve other ill health plus the stresses of everyday life which have been very successful. I was therefore both saddened and angered when I read this article below:
I, like many, do rely on the orthodox methods at this stage in life to control my epilepsy and will readily admit that my quality of life would be different without them. Sadly, I am not confident enough to come off them to a) see if I the seizures remain and b) if so to try different therapies whilst having to deal with them. However, a great number of people find victory with the alternative and a beautiful example of this is below:
What this said to me was how Pharma companies have very little care for the health of the people, it’s simply about how much money can be generated. It also appears that with the use of alternative therapies on the increase, many companies are entering into a state of panic realizing that they will be out of pocket because of this. For those that benefit from these therapies, they will find deprivation of health and pain relief which, quite frankly I find unacceptable.
As I researched article after article the vast majority erred on the side of negative influence by the industry towards doctors, omitting to maintain the patient’s health as a priority. Both quotes below are from research undertaken by the National Centre for Biotechnology Information:
‘The consequences of lax oversight is that the industry’s influence has expanded and a number of practices have developed which act against the public interest. The industry affects every level of healthcare provision’
‘ Most doctors distributed free drug samples, and are more likely to do so based on a patient’s financial need or sample availability than on knowledge of the effectiveness of the sample product.’
One particular article which showed both sides of the coin was interesting to read as the majority of comments from the public felt the companies didn’t have their best interests at heart.
In January 2009, the concerns over these influences brought about a positive change in tightening the guidelines. However, when I read the intentions of the pharma companies now, it is alarming to realize that they will quite clearly stop at nothing for their financial gain.