Any ideas or thoughts on resilient cluster cycle

[Tony Only]

We have been trying to help an older fellow clusterhead who is not on the internet with a little team of buddies. The challenge is a presumed cluster cycle that does not seem to respond to treatments that would work for most. I guess I am asking if someone sees some other condition or cause between the lines or has some ideas what should be checked to outrule any other causes for such a tenacious situation.

Here goes ...

Case is with male patient, I just call him X here, close to his seventies. Cluster headaches started in 2018 when diagnosis was set right away and incredibly lucky X also received oxygen as an attack treatment right away. Head MRI also taken in 2018 and it was ok. He has only one minor neck injury in his past, very large operations with his teeth (several teeth removed) when cause for his headaches was not known. 2019 headaches came back and it was a horrible year, CH being even more severe than now. 5-6 steroid courses did not terminate the cycle and this cycle may have been terminated with RC seeds but not sure. Here and there X has been taking Vitamin D. Headaches were gone for almost two years and now have returned in change of 2020/2021. So X has experienced only around 3 cycles in his lifetime.

Current cycle is pretty bad, attacks coming around every 2 hours, for maximum of 15-16 attacks per day (attacks may blend in into one another). I have his attack diary if it helps. Current medication is only oxygen and Diclomex rapid 50mg (diclofenac). No other medications in use. X has been trying to terminate this cycle with psilocybin (mushrooms) and especially before using mushrooms attacks were happening like clockwork. Headaches seem to react to busting, but not by calming down, by increasing frequency and severity. This was expected at the beginning but IMO should not be happening anymore and it is. 4 doses have been 

1st dose: approx 1-1.25 grams
2nd dose: approx 1.5-1.75 grams
3rd dose: approx 1.5-1.75 grams
4th dose: approx 2.5-3 grams

I asked him could the cycle be happening like it is now if he had not been taking mushrooms and he said probably yes. This is a man who has never used psychedelics but he felt the 1.5 (-1.75) gram dose being more or less the same than the 2.5 (-3) gram dose.

X will probably keep on busting and his daughter is delivering him vitamins this weekend for Batch regimen (anti-inflammatory regimen). Some vitamins are hard to find in Finland but especially so in the countryside where X and his wife are living in.

I'm personally wondering

- Since there are no blockers present, is there such a thing as very personal reaction to psilocybin that even 3 grams would not be felt
- Is there some another condition that could be mimicking CH symptoms almost exactly but would not show up on head MRI (something spine related perhaps like cervicogenic headache)

Any ideas or thought would be very much appreciated 

[jon019]

....wow....that's a tough one. Any thoughts or consideration to allergy mediated (molds,chemical) in his home environment? Has Benadryl or similar been tried? A food log with selective deletions in diet?

Edited July 14, 2021 by jon019

[Tony Only]

44 minutes ago, jon019 said:

....wow....that's a tough one. Any thoughts or consideration to allergy mediated (molds,chemical) in his home environment? Has Benadryl or similar been tried? A food log with selective deletions in diet?

Thanks @jon019 !

He was actually away from home in motorsports event and was unexpectedly pain-free which might suggest towards some environmental factor.

I don't know about his diet other than that there are no clear triggers he would be aware of. Good thing to consider !

I will pass along your suggestions, thank you again 

Edit: I think our european Benadryl is somehow different from yours (and thus useless). Benadryl 8mg sold in here is acrivastine.

Edited July 14, 2021 by Tony Only

[jon019]

....ooops....sorry. Benadryl just a brand name...is totally different compound outside US/Can....

.....what i refer to is diphenhydramine.....which in Britain (EU?)is available OTC (i think)as a "sleeping aid".....perhaps Nytol or Unisom...or something called Dimedrol (help! UK folks). Old time med that i have found personal success with..... and many others report same. batch describes partly as a blood brain barrier transit issue. could always deal with the drowsiness for the definitively beneficial effect....

....away from home PF surely indicative....but involves too much to be specifically helpful (diet, setting, lodgings, activities, etc all different). gonna have to drill down further...

....been chasing diet alterations my entire CH "career".....never amounted to much but i was able to narrow down to several triggers: aspartame (one of the artificial sweeteners), msg (ubiquitous under various names in most prepared foods), allergens specific to me (tomato), and, of course, alcohol. drastic changes do not narrow it down, would suggest taking out specific groups at a time. read your labels..tis unfortunately shocking how many psychoactive ingredients are in the prepared foods we eat...and some of the supposedly "natural"...

Edited July 15, 2021 by jon019

[CHfather]

I guess this NHS page might be a guide to brand names for diphenhydramine.  https://www.nhs.uk/medicines/diphenhydramine/   Note, however, that it lists brand names in Part 1, but only says in Part 2 that some of those brands have diphenhydramine mixed with other medicines.  

Benadryl is time-tested. I will mention, though, that Batch has suggested Quercetin instead of Benadryl.  More can be read about that at the thread titled "Ditch the Benadryl."

[Luis]

Hi, 

 

has he tried to change his diet at all? Like not eating histamine heavy foods? See if that makes a difference? 

[Tony Only]

Thank you @jon019, @CHfather, @Luis

Interviewing X's daughter further there's a special place (garage) where X spends lot of his time smoking and doing crossword puzzles so there might be some of those environmental / allergy issues right there.

I did my searching and looks like we don't have diphenhydramine available in Finland anymore. I'm not sure could you get that imported if your doctor writes a special license for that.

X has started Batch regimen (anti-inflammatory regimen) today on a 2 week loading schedule. 

I recommended melatonin since nights are worst but not having hopes up for that one. One thing that might help is finnish Acetium (L-cysteine) that some heavy smokers have found beneficial. Sometimes there's even more acetaldehyde in their diet so it could cover few issues at the same time.

Keeping my thumbs up

[Tony Only]

Things are looking pretty bad. X is now almost three weeks in doing Batch regimen (anti-inflammatory regimen) on 2 week loading schedule. Since things were not improved after 2 weeks, I adviced him to continue third week on 20,000IU/day dose. Still no progress. I messaged X's daughter to try and get 25(OH)D measured again. Before starting Batch regimen it was 85 nmol/l.

I am starting to wonder is this "natural" cluster headache at all since it is not responding to MM or Batch regimen. His head MRI is clear but could it be some spinal issues? Previous relief might have come from steroids or LSA. His symptoms are textbook cluster and now averaging on 10 severe attacks per day (there are probably same attacks reactivating short time after using oxygen). Does anyone have any questions that I could ask him to try and figure out what this is?

[BostonHeadacheDoc]

Hi Tony, sorry to hear of this. To clarify- he is getting a good (but sometimes temp) response to O2? The attacks come on quickly to severe like CH? Night attacks mostly? Does alcohol trigger an attack? He has had verapamil? Tried high dose melatonin?  Does he have sleep apnea? 

One could review the imaging as newer onset side locked headache in an older person should always mean reviewing imaging in detail- for instance masses outside the brain may compress the trigeminal nerve.

[spiny]

Tony, please be sure that he is doing his 'post' breathing for five minutes after the pain has stopped! If not, it comes right back for most and we all want to abandon ship when the pain is gone. DON'T!!! It will return with a vengeance! And that ups the number of hits per day!

His D levels are quite low! 85nmol/L is about 34 ng/ml. We want it to be above 80ng/ml or 85ng/ml. So, more loading is needed to get there. Yes, I agree that he needs a new D3 test! He also likely needs more D3.

On the Melatonin, he can go up to 25mg. I used to go up to 30mg personally.  I did not take it all at once, but in two or three doses as I was up with a hit at night. For me, Benadryl is more effective, but I used the heck out of Melatonin for years too.

Is he eating 'clean' as they say? No MSG, booze, other stuff that kicks off the CH, right? Some give up chocolate and a lot of foods with a cycle and benefit from it according to them. I can't do booze or MSG. Bacon is still on the menu here. But others delete it during a cycle. 

Doc has a point too. Hopefully you can check into that bit as well. 

ATB and thank you for your tireless work for CHers over there! 

 

[ThatHurtsMyHead]

Boston Doc Rocks!   

Tony,  Gonna pepper you with a few questions: 

Can he do a prednisone taper?  It won't fix him, but might get him some temporary relief till you guys find something that works for him.

Was he sticking strictly to the 5 day dose schedule when using mm?

Did he trip?  Or was the experience muted?

What does he eat?  Anything with Tyramine can and will cause his attacks to be more frequent and more intense. 

     Eliminate anything that's high calorie (no cake, pie etc)

     Eliminate anything that's fermented (no real cheese (the cheese whiz stuff in the can isn't really cheese at all, and is ok).  Tons of stuff we eat on a daily basis are fermented or aged and are high in Tyramine.  (soy sauce, any meat that isn't SUPER fresh, vegetables more than a few days old (high in tyramine).  Anything preserved, also high in Tyramine.

J

[Tony Only]

Thank you all so very much for your input !  

@BostonHeadacheDoc Yes, O2 aborts efficiently and he is doing the extra inhaling after pain is gone so attacks coming back so fast is puzzling. Yesterday I sent his daughter some videos showing hyperventilation and breathing techniques. Attacks are very classic CH going fast to severe, but untreated duration is unknown since X does not want to know how long they would last without O2. I can relate to that. He has had mostly night attacks previously but in this cycle hits are coming regularly, day or night. I had not asked about alcohol, I sent a question. He has had verapamil but probably not melatonin - thanks for reminding of that ! Will ask about sleep apnea.

I hope they can find someone to take a closer look at the imaging. The age where onset happened is rather peculiar. 

Thank you so much ! 

@spiny Yes, there is sufficient post breathing, that's why it's so odd that frequency is this high. I think he will be able to get a new D3 test soon, with loading doses used he should now be way up higher. I think the Vitamin D3 products used are quite reliable although they are locally purchased. We had headlines around a decade ago about vitamin products sold and tested here containing zero amount of vitamins promised ... so you never know. I guess I have kind of forgot about melatonin, it's dismissed over here quite a lot often with a comment it's lacking scientific proof.

I don't know much about his diet, other that he eats very basic food and has not altered anything between pain free and now. But very cool input from you guys, I forwarded your information to X's daughter. Thanks spiny !

@ThatHurtsMyHead On his previous cycle he had to use many steroid courses with increasing doses and he felt they contributed to CH going more severe and cycle kind of neverending. I have understood they do not consider them again. I have personally had them delivered IV in larger amounts but really hesitate to recommend that (to anyone). I think actually 5 day dosing schedule was not carried out carefully. No tripping, even 3+ gram doses do not seem to do their thing in that sense. There are no blockers present. Busting material should be potent, others have used the same material. 

Very beneficial information about diet and completely new things to me ! (Tyramine) I forwarded your messages too to X's daughter, thanks very much THMH !

 Keeping my thumbs up and will keep you guys and gals posted