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Possible CCH remission with KETO/KETOGENIC/LCHF diet!

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#1 Wed, 10/10/2018 - 18:06
rightsider
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Joined: 04/11/2015 - 10:39

Possible CCH remission with KETO/KETOGENIC/LCHF diet!

Hi everyone!

I’ll try to keep this as brief as possible. To cut a long story short, after 24+ years of chronic clusters I appear to have put them into some sort of remission. I STRONGLY SUSPECT, though of course I could be wrong, that the reason for this is my switch to the ketogenic/keto/LCHF diet. It’s a bit of a complicated story, because since starting the diet many months ago (well it’s a lifestyle not a diet) I have spent a lot of the time experimenting with intermittent fasting (skipping breakfast). With the benefit of hindsight, it became apparent to me that this was causing major problems, which is annoying because fasting is a very healthy thing to do! Anyhow, I have posted the details of my story/reasoning on a thread about the keto diet on clusterheadaches.com, on the ‘Medications, Treatments, Therapies’ message board. I’m on there as ‘Rightsider’ too, so you can see which posts are from me.

http://www.clusterheadaches.com/wwwboard2/index.html

So, if anyone is interested in the details then feel free to pop over for a read. I’m happy to answer any questions either over there, or here. The impact that the ‘lifestyle’ (not diet) has made on my health in general, but especially on my headaches has been beyond any expectations, so I’ve now decided to speak up. I’m not alone by the way. There has been a number of clinical studies that have shown the diet to be massively beneficial to migraine and cluster headache patients, and there is a large clinical trial underway at the moment for migraines (there may be others!). The results of two studies done on people with clusters showed amazing results. Links to these studies are given on the thread where I have posted.

Apologies for being a bit vague with this post. But, as I’ve documented everything over there I though a simple ‘heads up’ may suffice.

Take care all!

Fri, 02/11/2018 - 11:51
rightsider
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Hi everyone!

In case anyone is interested, I've put some updates on the message thread mentioned above. Basically, I've now been headache (and shadow) free for about eight weeks now, and this last week my verapamil has been at 60mg a day. I know this amount is probably pointless, but the last time I came off it I ended up in a terrible state (long story!). So, I've been uber cautious and dropped it slowly. I've been able to consume alcohol without any problems and I've never felt in better health. On Monday I intend to come off the verapamil altogether. This is quite a moment for me because being chronic, I've basically been on medication for 23+ years. I was going to stop it this week, but I've got a long trip to the OUCH conference in Plymouth and an overnight stay. So, I thought it would be best not to push my luck and wait until I'm back home.

Decades of medical drugs (you name it, I've been on it), countless different supplements (you name it, I've tried it), crazy (legal) alternative treatments (including chiropractors, homeopathy, acupuncture, etc . . . etc, oh and the old chilli/capsicum cream up the nose routine), illegal treatments (which do help to be fair), SAD lamps, dental investigations, many different doctors, three neurologists, hundreds and hundreds of hours spent huffing oxygen, bucket loads of Imigran injections and many many other things I won't bore you with.  Change my diet and voila, remission!

Anyone who says that diet does not influence cluster headaches is talking absolute nonsense and I would argue that was any doctor/neurologist in the world. That belief is not just based on my experience, but also lots of research. Diet is not the cause of cluster headaches. But like alcohol, disturbed sleep, light levels, stress, lack of stress, the smell of paint, altitude, nitrates to name a few, it can be a MASSIVE underlying trigger. In fact, in my opinion it's the biggest underlying trigger of all. Like all cluster headache sufferers, I was 'probably' born with some dodgy DNA that makes me susceptible to a chain of events that leads to a cluster attack. Being chronic means I'm super sensitive to this chain of events all the time. By switching to a ketogenic diet and altering my metabolism to run primarily on ketones (fat), my susceptibility to triggering an attack has massively decreased. I could waffle on and give what I believe to be the reason for this. But I won't as I'm not sure that anyone is that interested. Not surprising really as 99% percent of people (like me six months ago), think that drugs are the only answer to serious medical conditions. However, what I will say is this . . . . .

If cluster headaches and/or medications are significantly impacting your quality of life, then perhaps a switch to a well-researched ketogenic diet may be the answer. Thorough research is important because many folks who think they've gone 'keto' haven’t, because of the hidden sugar and (more complex) carbs in everyday foods. The diet been shown to be massively beneficial in two clinical trials for cluster headaches, a number of trials for migraine and I have read many personal accounts from people who have put clusters, neuralgia and migraines into remission on the diet.

Finally, if you’re thinking 'why haven't I heard about this more?'. Well there's one simple reason. Diets don't make money for drug companies or health providers for that matter! wink

Take care everyone!
 

Thu, 08/11/2018 - 19:48
rightsider
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Came off verapamil on the Sunday, last tablet on Saturday before I left for the OUCH conference on Sunday (long drive, but worth it!). First time unmedicated for 23+ years.  Still no headaches or shadows whatsoever. Enjoying a glass of dry white wine as I type this with no fear of an attack. Just exercised and the difference without the verapamil is crazy. 

 

Diet is more powerful than any drug. Just sayin. laugh

Sat, 22/12/2018 - 19:58
rightsider
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Joined: 04/11/2015 - 10:39

Quick update if anyone is interested.

 

I've been medication free now for 7 weeks and still completely attack free. So, thats 15 around weeks without any shadows or attacks. I cant even triggar a headache and in the interests of research I've tried! Stopped all prescriptions with my GP (verapamil & sumatriptan) and three oxygen tanks and an on demand mask gathering dust. It's like twenty odd years of headaches never happened.

 

Anyhow, if anything changes I'll update the thread, so no more updates can be taken as 'still in remission'!

 

Have a great Christmas everyone!

 

 

Wed, 26/12/2018 - 09:30
John S
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Thank you for posting your experience with the Keto diet, I am really pleased to hear that it has worked so well for you. I have had a good read through the link you have provided. 

I have not tried it myself but I am beginning to believe that diet can have an impact on Cluster Headaches although bearing in mind we are all different and our condition varies for each of us as does our reaction to treatments.

On the diet and fat related issue, I had a NHS health check in May this year which showed a slightly higher chlorestoral level than I would want. I was not surprised since not being a meat eater I consume cheese quite often. I decided to take decisive action and cut out just about all saturated fat from my diet, difficult at first without my much loved cheese which has very high saturated fat content however I soon got used to it. I did also increase my exercise level although I have always been a regular runner. Effectively I have conditioned myself to the body continually burning any excess fat and any that I consume.

My chlorestoral is dropping and continuing to do so. Although not originally high my BP has also dropped to around 105/61. My resting heart rate has always been low due to the running and is 46 at age 65. My BMI is 22.9.

I am an episodic CH sufferer and would normally have expected my last bout in October/November this year, that has not yet happened. I am not saying it will not occur only time will tell. It may be the age effect starting to impact although I have had no previous indications of this. The other impact of cutting out saturated fat is that I no longer need to take Lanzaparole for a reflux condition I have had for many years. My last tablet was taken in June. 

It is probably too early to say for certain that diet has had a positive impact on my CH but I am forever hopeful, any thing is better than this terrible condition. I can be sure however that diet has had a positive effect on my general well-being. 

Good luck rightsider with your continued remission and thanks again for posting.

John

 

Mon, 01/07/2019 - 10:13
rightsider
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Joined: 04/11/2015 - 10:39

Massive thanks to the OUCH team for allowing me to spread the word about using a ketogenic diet as a treatment at the summer conference. As usual a great conference, run fantastic people and super supportive experts giving hope to sufferers. To be fair, I tried to cover too many things in my slot and perhaps some of my experiences were not explained very well. So, if anyone has any questions, then feel free to ask on this thread. 

Tue, 02/07/2019 - 12:52 (Reply to #6)
Dorothy
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Joined: 19/02/2014 - 10:16

Thanks, Rightsider! 

Anything that might help is worth hearing about and I'm so pleased you're still headache free! We had a great mix of people at the conference, I really enjoyed meeting up with old cluster buddies again and finally meeting the ones I'd only spoken to online or by email and there were several of 'my' fundraisers in the audience! Great to see them all. Can't wait for the next time.

Dorothy

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