Hello,

I've written a a few posts over the last couple of years just to let everyone know what I'm up to.

In short I had terrible MCS for about seven years. I started taking an antipsychotic called amisulpride, and it made me practically 100% better. I'm not sure to explain how it works. Something to do with the Limbic system and hormones. The time I have been well has been fantastic. I've had two years of normal life and have managed to acheive so much. But I still have to take the medication in order to stay well, and was wondering if there was anyway to acheive this wellness without the need for drugs.

The tablets give me three undesirable side effects: Weight gain, reduced sex drive and loss of creativity. So obviously if there was anyway to be well without the medication that would be great.

I realise I'm probably one of the only people to take this route so I doubt that anyone can give me a concrete answer but any speculation would be appreciated. Is it possible that overtime my MCS could reduce or go away if I continue taking the medication? Or could the opposite happen? Could it be worse if I ever came off them.

I took amisulpride for about a year a few years ago, and although I was very well when I was taking it, when I came off it I seemed even more reactive.

Has anbody had any experience with this DNR treatment? www.dnrsystem.com/
I know everyones MCS is different but I feel my MCS was very much tied up with anxiety and depression and could possibly benefit for this kind of treatment. I guess I have the luxury of being able to travel and attend these seminars while being well but would rather avoid it if anyone has found them to be unhelpful.

So all in all I'm fairly happy where I am. I am practically 100% well. (I've had a small reaction about every six months or so, and always for a good reason.) The dose I take is very small. (I take 100mg, the average dose is 800 - 1600mg. But I strongly suspect that an even lower dose may be effective and may try it soon). But Ideally I dont want to be on this forever. If anyone can offer any advice or speculation I'd be very appreciative.

Ben

Hi Ben,

Good to see you on the site again and great to hear you are still doing well on amisulpride. It is an amazing feeling being able to breathe freely again without wearing a mask isn't it!

I think you are spot on with your assumption of how an antipsychotic drug is helping you. MCS was many years ago linked to a phenomena known as 'kindling' in the limbic system. In basic terms, kindling is a process involving excessive firing of neurons which can spread rapidly through regions of the brain. It is seen in conditions such as epilepsy and seizures. In MCS it appears this excessive activity in the limbic system is stimulated by minute amounts of volatile organic compounds (VOCs) such as synthetic fragrances. In animals both a large acute toxic insult and more moderate chronic exposure have been seen to sensitise the brain to future small exposures, resulting in kindling and the symptoms of MCS.

Anxiety, depression and other mood disturbances have also been a huge part of my illness, along with MCS. I see both MCS and mood disturbances as symptoms of an underlying disease process caused by toxic injury to the brain and triggered by subsequent exposures. It is no surprise that many suffering by MCS are also experience depression and anxiety since the limbic system is the centre of emotion....

As I have mentioned to you before, I experienced symptom relief when I had MCS taking diazepam...which reduces the excessive brain activity. In the end I recovered by addressing hormonal and neurotransmitter imbalances, particularly adrenal hormones and the neurotransmitter serotonin. I took supplements of the adrenal hormone DHEA - which interestingly calms brain activity via a similar mechanism to diazepam and also influences the production and function of neurotransmitters such as serotonin.

I know you don't want to have to take pills forever. It's my feeling that anything that can reduce stress, improve adrenal function and support healthy neurotransmitter balance would be helpful. Techniques like DNR and Gupta Amygdala Retraining would certainly fit the mould, as would meditation, yoga etc. Quite a few MCS sufferers have reported improvement and even cure using the brain retraining programs (check out this forum thread - www.ei-resource.org/forum/multiple-chemi...-no-longer-have-mcs/). I personally have benefited greatly from mantra meditation, both in terms of my health and also my life in general!

If it's only medications you want to ween yourself off then I'd suggest diet and supplements aimed at supporting adrenal function and positive, stable mood might be helpful. You will no doubt have come across Prof. Martin Pall's supplement program? I believe this should help in many ways...if you can afford all the supplements and don't mind taking them. The supplements in theory should reduce oxidative and nitrosative stress, thus protecting brain cells, and ultimately restoring the body's ability to efficiently produce the hormones, neurotransmitters and other biochemicals required to maintain good health. Something to look at if you haven't considered it.

All the best and keep us informed of your progress