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Keto diet and cluster headaches (Read 8161 times)
Mike NZ
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Oxygen rocks! D3 too!

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Auckland, New Zealand
Gender: male
Re: Keto diet and cluster headaches
Reply #50 - Aug 26th, 2019 at 2:34am
Wonderful news, although you might need to change your username from CHDAN to just DAN, which is a distinct step forward - long may it continue!
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Re: Keto diet and cluster headaches
Reply #51 - Sep 6th, 2019 at 2:35pm
Hey everyone!

It’s been great to catch up on the positive updates in this message thread. So, just to add to the positive vibes I thought I’d give an update on my situation.

Well, I’ve now gone a full year without a single attack (give or take a few days, or possibly week). Nothing more than a VERY OCCASIONAL mild sensation, or as like I to call it, a shadow of a shadow! I went medication free on the 5th November 2018. Therefore, still a couple of months to a medication free year without attacks. So, I’ve basically gone from 24 years of chronic clusters (around 1000 attacks per year) to a completely normal life.  No more meds, oxygen, Imigran, energy drinks, ice packs, supplements, SAD lamps and sleep restrictions for me! I can drink a beer with no problems, though to be fair I don’t as being keto, it’s dry white wine or spirits with diet mixers when I indulge. Never felt healthier or fitter in my entire life. My latest blood test results put me at a uber low risk of CVD and all other previous minor health issues I had before going ketogenic have continued to be absent. It’s also been nice to fit into the same size jeans that I used to buy when I was 16. Never thought that would happen at 46!  Cheesy I still find it hard to believe how everything has changed. It’s like 24 years of headaches never happened!

I had the privilege of being a speaker at the OUCH-UK summer conference a few months ago. There was quite a lot of interest in what I had to say, and I did meet a few people who also have had great success by going ketogenic. One of the neuro’s who spoke at the conference also highlighted the success of the ketogenic diet in clinical trials. It’s just a shame that official ‘nutritional guidelines’ prevent many neuro’s from recommending the diet as a treatment. One headache specialist did say to me that they sometimes ‘mention’ it to sufferers, but often found a lack of belief, willingness to change diet, or fear of fat ( Roll Eyes) as barriers to patients trying it. Plus, the fact is that some suffers just want a pill. Personally, I would have tried anything in the past to rid me of the beast. Actually, apart from wearing magnets, I probably did! Oh, how I loved pouring capsaicin cream down my right nostril for weeks on end, to name one of many examples!

On a related matter, even though I’ve been keto for well over a year I have never monitored ketone levels in my blood. When I first started the diet, I did use the urine strips to check that I was in ketosis. However, after a few weeks they stop working as your body becomes more efficient at using ketones. Given that the weight was falling off me, and the fact that I was able to cycle for hours and hours on water, I knew I was ketogenic (or ‘fat adapted’ in exercise terms). However, I have just purchased a blood ketone monitor for investigative purposes. I will be checking my levels over the next few months to see if the ‘shadow of a shadow’ sensation I get (every 3-4 weeks) coincides with a drop in my ketone levels. I’m not sure it will to be fair. I have had the odd day in the past twelve months when I have consumed enough carbs to drop out of ketosis and had no sensations (e.g. a mountain of cheesecake after my Christmas dinner!). This is something that many people with epilepsy have noticed, in that a period prolonged period of ketosis provides benefits beyond the resumption of a more standard diet. Anyhow, for anyone interested, I’ve done a couple of tests so far and got ketone blood levels of 1.4 and 1.5 mmol/l. Both those days were exercise free. So, it will be interesting to see what I get after a decent ride on my bike.

Take care all.


P.S. If anyone tell me that magnets have helped, I will be seriously annoyed!  Grin
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