Hello,
His first time was 2011 at the age of 62. Had episodes for 3 years then 2 years off. The beast returned briefly in Jan. 2017.
Now we are into week 5 of an episode.

His attacks are triggered by eating so he eats very little if at all and continues to lose weight. Does anyone have any ideas what I can do for him to help him gain back some strength before he ends up hospitalized. He has never been in a hospital for anything and hasn't been to a Dr. in 4 years. He does drink boost but even that sets off a 30 minute round of 10+.

My heart goes out to all of you who suffer these terrible headaches. Also to those of you who are the support system for someone who suffers.

Julie B

Welcome aboard Julie...glad you found us...……sorry you had to.....

….at one time excessive "chewing" was a trigger for me...gum was IMPOSSIBLE. Not so much from regular eating except for really tough stuff...you might want to consider a dental visit to check for TMJ and /or tooth jaw alignment...just DON'T let them pull any teeth to "cure" ch.…

...have you tried smoothies besides the boost...which could be anything through a blender...then through a straw? Try really COLD...that was effective for me (a really cold energy drink at first sign of hit)….

…..any history of allergies...specifically food allergies?

….WHAT is he eating....many foods contain MSG under different names....which can be a trigger for some (same for aspartame in diet drinks)…...cured meats are a problem for some. Diet is reported as less of an issue for CH than for migraine........but it CAN make a difference

….you have GOT to find a headache specialist neuro.....the hospital may just drug him...many Docs (INCLUDING "regular" neurologists) have no clue...……...

Mike is right...this sounds very unusual...have any Docs any clues?

Best

Jon

Thank you for your responses. I am so glad to have found this site and to be quite honest I found this site a couple years ago but was hoping to never have to come aboard. Happy that I have.

In my research I was sure I read that people over the age of 70 do not suffer from CH. He turns 69 next week so we are hoping that statement is true.

He has never been diagnosed with CH but I have kept journals rating each attack and researching online for 8 years. Witnessing his attacks I know they are cluster headaches.

He also suffers 24/7 from PN (peripheral nephropathy) so has a high tolerance for pain and has always just gotten through his CH episodes by just enduring the pain,pacing, moaning, and sometimes crying.. He takes no medication except an occasional gabapentin for the PN and lots of Advil. He has tried hot and cold wash rags during an attack but mostly he just needs to be left alone to work through them.

He is a recovered alcoholic and hasn't had a drink in 21 years. The alcohol caused the PN.  Getting him to go to a Dr. is difficult as he has never had good luck with Drs. over our 35 years together.

He does have some teeth that need extracted per a trip to the dentist prior to this recent CH episode.

I have tried to find a headache specialist in our area but googling has gotten me no where. We live in Washington state just a few miles from Olympia. If anyone knows of a specialist in our area please share.

Will try the rice idea. We eat a lot of Jasmine and CA brown rice. He was a cook and does all our cooking so we eat pretty healthy food and avoid MSG.

Sorry I didn't mean for this post to get so lengthy. Just so nice to have someone to talk with. We have no support group it is just us.

I think we will start with getting those teeth pulled and I will make him a rice porridge and add some local fresh berries.

Thanks for your suggestions and for just being there.

Julie B

Forgot to mention that my husband thanks me daily for being there for him when he is going through an episode so I am doing OK. This time is harder because he has lost so much weight and is so weak.

I also have a good friend that is willing to listen and to take me out to lunch or on a garden tour.

Julie B

Some great responses here showing the depth of knowledge that we have here across CH and more.

Really impressed with the suggestions around it possibly being just the timing of when he has meals as CHs are also known as alarm clock headaches and can happen at the same time each day to within a minute or two. Simply trying eating a bit earlier / later may help.

It is great that you have your own support plus you're now part of the worldwide CH family, so you have people who know what CH is like from personal experience. Plus we've gone through the full process of working with doctors to work out what the problem is and how to address it, with a multitude of experiences.

Since he has never been confirmed with CH, it is imperative that he gets a formal diagnosis to work out exactly what the problem(s) are as there may be more than one at play and there are multiple other issues which can give the same symptoms as CH. This is essential as it will drive what the appropriate treatments will be.

Neuropathic pain if never fun, but whilst he may have a high tolerance for pain, there is no need for him to suffer any more pain than he needs to. If it is CH then oxygen and imitrex are very effective abortives. They can work in a few minutes which is a whole lot easier than just toughing it out.

Chronic pain is pretty tough and that is before you throw in CH. So he may well benefit from your local pain clinic as they will have experience in supporting people in his situation. BUT be very careful that they work with his headache specialist as simply applying pain killers to CH is not effective and there is the potential for the treatment for one to impact the other.

Gabapentin can be very effective with neuropathic pain, but he needs to be on the most effective dose. So there may be opportunity to move to a more effective dose (working with his doctor for this of course). There are also additional drugs which can help with neuropathic pain, like amitriptyline. So there may be opportunity to improve his treatment for PN.

Send a PM to Las Vegas as he has the details of headache specialists that people have recommended as being knowledgeable around CH diagnosis and treatment.

Getting teeth that need treating is a good idea but as others have said, be careful about which ones get pulled as lots of people with CH have had good teeth pulled and it didn't impact their CH.

Hats off to those with cooking skills that far exceed mine, hopefully some suggestions might work. Another option might be for him to try eating something just after a CH. It may be that he has a small window when he can eat then without it triggering a CH.

Given the limited amount of food he is getting, it is probably worth including him using a multivitamin.