It’s been a long while since I have blogged. But a few situations kind of give you a kick up the ass to get you blogging again. Unfortunately, I’ve had a few nonsense quarrels with some doctors and neurologists which have provided me with the drive to get typing again.
In January I went to see my local doctor and ask them for some very specific help. I broke my conversation with my doctor into precise parts so I was able to come out with some precise answers.
- I eat very well, my gluten-free diet helps my epilepsy.
- I have some new morning seizures, my face drops it’s muscle tone and I feel like it’s a stroke.
- I would like to see a new neurologist, I’m not responding to any prescribed medications and their side-effects do have a terrible consequence should I change them or increase the dose.
In my view this was a fairly decent enough reason to arrange a quick appointment with a neurologist. I was surprised to see that my doctor hadn’t been able to arrange an appointment until May. So, in the meantime I arranged a private consultation with a neurologist to help with my continuing situation, again expressing my interest in more ‘holistic approaches’ and not another trip down the pharmaceutical route as medications do not work for me.
Following the private consultation I have received another letter in the post suggesting that perhaps I should try two other medications! I do kind of remember telling this consultant that I had no interest in other medications, yet these were the two he’d suggested:
It does strike me a very disturbing, also incredibly patronising, that some doctors or neurologists simply refuse to listen to our individual requests. It seems that being a neurologist and advising individuals with epilepsy is a fairly simple process. It follows a very simple route of 1. See patient and work out their type of epilepsy 2. Give some medication and hope that’ll work 3. If it doesn’t work come back and try this type of medication 4. If that doesn’t work try this type of medication etc. etc.
So, back to Fycompa and Zebinix. The side effects of both of these suggested medications are incredibly worrying. I’ll leave the research to the reader should you wish to learn more about these two forms of AED, however it won’t take you long to find the words ‘SERIOUS PSYCHIATRIC AND BEHAVIORAL REACTIONS’ relating to one of them. I’m just so grateful I have a girlfriend who’s able to sit by my side and consider what side effects these medications may have before I try these pills.
Why can’t some professionals take more time to consider a patient’s lifestyle? I even heard from a recent doctor these exact words “Diet has nothing to do with epilepsy, changing it won’t help”….Come again!!? So following this sound advice I could go out into the world drink aspartame or sugar loaded drinks and eat burgers chips and avoid all vegetables for the rest of my life and hope for the best?! It doesn’t take a neurologist or doctor to work out that this may cause some negative consequences to the average epileptic. Worrying to think that this individual has no idea what an impact her words could have.
What I’d like to see again is the old fashioned doctor, the one’s that my mother and father talk of all the time. They provide more time to listen and consider your actual lifestyle, time to consider why you don’t want to take medications, time to consider why you wish to follow the holistic route before anything else, time to talk and speak through your actual situation, not just sit opposite you and make judgements and throw a needle into the haystack when fixing a very delicate situation.
They do exist, by this I mean the ‘old fashioned doctors’ are out there. I spoke with a few recently. During an unfortunate virus I’d contracted in March I spoke with a lovely German doctor who provided me with 30 minutes of her time. I’ve also been visiting a Chinese herbalist, who has a very caring nature and great ear too. This only suggests to me that the English doctors are under so much time pressure that they’re not able to provide honest requests. The western approach to dealing with patients is very focused on individual body parts and ‘pill for a symptom’, if we were allowed more time with our doctors perhaps some discussions would also be allowed for life styles and how we could avoid getting ill in the first place.
Perhaps it would great to see a neurologist to act in this fashion too. Then they would be able to have time to focus on my lifestyle and health in entirety. Should this actually happen they may notice that a focus on stopping seizures isn’t the only consideration. For a while now I have found it preferable to have epileptic seizures and function as normally as possible for the remainder of the day instead of having less seizures alongside incredibly negative zombie like side effects.
As epileptic patients we wish to be heard as people, being another statistic to support a pharmaceutical company’s progress isn’t in our best interest.