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Opting for the med-free route


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I have decided that my non-visual symptoms have now quietened down enough that I am going to opt for no medications. I am tapering off the small dose of Keppra I was on (500mg); I didn't see a value in increasing the dose of something that works so globally, in my case where things are not so aggressive anymore. Other than my visual symptoms, I really don't feel that bad, at least compared to how I did, when it was painful to be awake. I realised I am probably no more than a bit clinically depressed, minus my visuals, and that I have been 'waiting' for something: to 'get better'. As long as I was waking up to the visuals, I still had this sense of waiting for something. The result of this thought process is a lack of progressive behaviour. But cognitively, I am so much better. The only thing that has been holding me back, motivationally and else, is my thought processes; this feeling that 'I am not well'. I figured, I can resolve the rest psychologically. My psych has fully supported me to opt for a psychological approach. I plan to start CBT, assuming I don't relapse after withdrawing from Keppra. My aim is to learn not to let the visuals affect me and my sense of well being, perhaps using methods of CBT for pain relief. The holistic therapy i.e guided meditations I have been provided as an adjunct to my psychiatric consultations have already helped me learn to 'witness' the visuals.  Just realising this even before commencing with cognitive psychotherapy, a change of thoughts itself, has already changed my behaviour greatly. The visuals may or may not go. The quickest option to recover fully, is probably to let the brain get on with it and resolve itself, and learn how to deal with things otherwise, so as not to put any more stress on the brain. All I will be putting into my body is supplementary (as per my HPPD stack thread)Strengthening the body's processes, but not manipulating them so aggressively. I have faith that the body is more likely to recover without being impaired by too much chemically. As my psych put it, 'we want to put less chemicals in you'. It is important to remember that there is a degree of psychological recovery that needs to take place; a rehabilitation in itself.

Edit: I suppose, fundamentally, the issue as I now see it with the med route, personally, is.. as long as you continually measure your symptoms, how can you expect to recover? At what point do you consider yourself 'recovered', and what if this 'recovery' never comes? If you don't set yourself a goal, you can't fail an expectation. What you can do, is change your thinking, and not let the visuals, for example, be a problem. 'Problems exist in the mind'. There have been many success stories on this forum using this thinking.

Due to the length of time trying meds and recovering, it is difficult to decide where a good point to stop is, what the baseline is, what normal is. Before you know it you are trying to supersede normality and place all your feelings in chemicals. What happens if you do make a full recovery, after years of thought processes measured solely by medication? How do you then proceed? When you feel a very normal but negative feeling, like a bad day, will you then measure it in terms of HPPD, will you think you require something to put in the body? What if the way you perceive your symptoms makes your recovery seem less noticeable?


Of course, the visual symptoms always imply that there is still recovery to be made. But I suggest that the other symptoms can be far less exaggerated if one separates them from the visuals, and makes a psychological attempt to resolve more internally, looking less to an external source.

There is of course, a reasonable amount of recovery required before going fully down a route like this i.e I definitely could not have handled my symptoms entirely psychologically months ago. The only thing I truly believe has really been responsible for my recovery thus far, is time. One thing I worry about is how much long term medical treatment interferes with your body's own ability to heal itself.

Will keep you posted.

- s

ps: I will still guinea pig novel approaches, as and when they become available !

Edited by syntheso
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Sounds like a sound approach! I look forward to hearing more about your experiences with CBT.

Are your experiences with guided meditation documented anywhere on the board?

Cheers. I haven't documented anything yet, as I need to do more sessions to speak effectively about guided meditation. But thus far, I have simply noticed:

- I used to believe that meditation wouldn't work because of CEV's. They used to distract me, and make me feel worse.

- In my first session this was the case. 

- In the second session, when I really tuned into what my careworker was saying, my consciousness became very heightened. I obtained a remarkable degree of clarity and ability; external sounds in the room just drifted by and did not distract me. The more and more this 'superconsciousness' expanded, my visuals got even more and more intense.. wildly so. But, did not bother me, quite remarkably. This was a big practical realisation for me.

- As the visuals became more pronounced, whilst they didn't bother me, I did start 'spacing out' (what I believe to be absence seizures, which I have experienced throughout my time with HPPD). But I was able to bring it back. I am confident that with more practice I can avoid this spacing out.


Great attitude man, I admire your approach to recovery. All the best with the anti med route. Please keep us posted.

Thanks Jimmy, all the best to you too.

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