Extreme cold helping

[glo]

Hello

It's been 2 years since we've been on this site (I write on behalf of my husband who has the CH's).  Cycle started in Dec 2020.  Emgality worked the first month but headaches came back and second dose did not work.  However, he is in the UP of Michigan and accidentally discovered that if he goes outside when the headache first starts and waits until he shivers, the headache goes away.   It has worked consistently for the past 3 days, though he has to go out every 2 hours or so.  My question is, is there something happening physiologically that can be mimicked by meds so he can get some sleep and also manage if the cycle continues into warm weather?  He's tried every med, including the vitamin regimen and the Gamma Core device.  His Vit D3 levels have been checked and are within recommended levels per CH guidelines.  Last cycle lasted 6 months.

Thank you

 

[drewbie]

I can speak from experience that I've aborted a headache before by jumping into a very cold sea. You know that shock to the body you get when you enter cold water, the feeling of your breath being taken away? It seems like that can be enough to knock out any headaches for me, CH, migraine or otherwise. Maybe there's a vasoconstrictor effect triggered by that, I'm not sure. I know I've read articles in the past about chronic migraine sufferers who've managed to significantly cut down their headache frequency by doing cold water swimming every morning. So, it doesn't necessarily surprise me that being in extreme cold might help to abort a CH attack. However, in terms of medications to simulate that effect, it would most likely be anything that causes vasconstriction. So, triptans, oxygen therapy etc.

Does your husband have access to oxygen? And, if so, does he definitely have access to the right oxygen equipment to get a satisfactory therapeutic effect? That means O2 tanks with a least 15 l/m flow rate, non-rebreather mask etc. There's also different techniques that can be used to improve efficacy of oxygen for those who may have found just standard breathing doesn't work well.

Energy drinks high in caffeine can also trigger vasoconstriction and do seem to help many abort attacks. They can also be taken at the same time as starting oxygen to enhance the oxygen effect in a lot of people, speeding up abort times. Some people say they work even better if they are really cold from the fridge (which might be relevant for your husband). Generally it means rapidly chugging down a can, or using one the concentrated energy shots. 

[glo]

Thank you, we have a standard O2 condenser but I don't think we get the flow rate he needs.  We do have the correct mask.  I'll research where to get the correct O2 tank.  

Thanks for tip about caffeine, I forgot about that, I do think they helped last time. 

 

Thank you!

[drewbie]

O2 condensors are essentially pointless for CH. You really do need to fast track getting the right O2 setup. Others on this forum are super helpful and knowledgeable about this.

[glo]

Thanks, it's coming back to me from dealing with this 2 years ago.  I sent the script request to his doc using the language from this site.  Thanks for the reminder!

[CHfather]

3 hours ago, glo said:

He's tried every med

Nah, he hasn't.  For example, if Imitrex (sumatriptan) injections don't work for him, then he doesn't have CH.  The thing is that many meds are prescribed wrong, so people try them and think they have tried everything, but it's quite likely that most of those trials have been meaningless because the dosage was wrong, the type of medicine was wrong, etc.  

The range of D levels associated with effectiveness against CH is very broad.  If he's in the range but D3 is not working, it might only mean that to work for him, he has to be at or near the top of the range.

Nice advice from drewbie.  Very glad that you'll be getting a proper O2 setup and using caffeine or energy shots.  That should keep him from having to run outside into the cold. I would consider adding Benadryl (one standard pill 4 times a day, or as tolerated) or Quercetin (not sure what dosage is recommended: you can put quercetin in the search bar at the top right of the page to read more).  I would try to get a prescription for some form of triptan.  The nasal spray might be worth trying first.  He could consider a course of prednisone, which is likely to stop the pain for at least a few days, maybe while he gets his D levels higher.  And there's busting, which is the reason this site exists -- click on the blue "New Users ..." banner near the top of each page.

It's possible that something in here might help: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

[glo]

They do work but he has 5-6 per day and we can't get enough shots.  

He did two courses of prednisone, has tried Depakote, Verapmil, nerve block, lidocaine, lithium, methergine, emgality plus more I can't remember.  He is preferring the cold to the shots, but it is not sustainable.    He's had these for 20+ years, we are working with a headache specialist but do truly appreciate advice from this forum.

 

thank you

[drewbie]

4 hours ago, CHfather said:

if Imitrex (sumatriptan) injections don't work for him, then he doesn't have CH.

This was actually a pretty interesting thing to read. Surely this isn't unconditionally true? 

[Pebblesthecorgi]

In principle I agree with @CHfather.  If one fails to respond to injectable imitrex then the diagnosis should be scrutinized.  I have a similar belief to properly administered oxygen.  If it doesn't work I would be skeptical of a CH diagnosis.

 

There is general agreement oral forms of triptans are useless for aborting CH.  Subcutaneous triptans should be highly effective in a person with classic cluster headaches.  Many find reduced doses of 2-3 mg highly effective in aborting an attack.  Using multi dose vials or splitting autoinjector doses helps reduce side effects and increases available doses.

 

As @glo points out when you are getting hammered several times a day its impractical and virtually impossible to keep up with the shots.  Between limitations on prescription amounts, side effects and rebound headaches very few could maintain control over 3 plus daily attacks.

 

I live just south of Michigan's Upper Peninsula in a similar climate and can't say cold exposure helps much.  Tried it naked in the snow and all.  I'm not sure most of us can get cold enough to trigger vasoconstriction in the brain without developing hypothermia.  Also when you warm up you are going to vasodilate like crazy which might be counterproductive.

 

Its good you are seeing a headache specialist.  They are a peculiar group.  It must be exhausting to deal with headache people all day especially if you deal with non responders.  With a few exceptions I suspicion many get jaded and burnt out pretty fast which is why you have to be your own resource and advocate. The very most important thing is to have a proper accurate diagnosis because that allows you to guide your own therapy.

 

Personally I believe besides the classic criteria for CH you should also respond to sq triptan and\or oxygen to support the diagnosis.  All the rest of the treatments are hit or miss and vary widely between and within individuals.  @glo mentioned many.  There's an endless list of things to try, scattered case reports about IV therapies, hormone intervention, surgery and stimulators but in truth none are consistently reliable.  Things like steroids (used properly), verapamil and other pharma have significant down sides which makes prolonged use impractical.  Also it seems the beast is a moving target and what may have worked for a cycle is a fail during the next emergence.

 

If you are confident in the diagnosis and maxed out conventional therapy, have followed the latest iteration of D3 and still struggling then it might be time to consider busting.   This is a very individual decision and choice which each person must be individually responsible.

[glo]

Thank you, busting is the plan.  Luckily it is "decriminalized" here (DC) though only avail in edible chocolate.  I don't see any dosing advice for that method...any ideas?  Otherwise we'll wing it.  

[CHfather]

4 hours ago, glo said:

They do work but he has 5-6 per day and we can't get enough shots.

Is he breaking open the injectors to get multiple shots from each?  That still won't cover 5-6 attacks per day, but properly set up oxygen will deal with many/most/all of those, so the Trex is just needed for breakthrough attacks.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/   Or vials and syringes, as Pebbles' mentioned.

 

4 hours ago, glo said:

He did two courses of prednisone, has tried Depakote, Verapmil

Verapamil is a good example of what I was saying . . . One form (immediate release) works better than another (extended release), but most doctors don't know that.  And the typical dosage required to prevent attacks is often far higher than most doctors prescribe. So it is concluded in many cases, "Verapamil doesn't work for me," when in fact it never got a test with a real possibility of working.  Same for prednisone. We see person after person here who gets doses too low (such as the standard "dose pack"), and/or time periods too short, in contrast to what is known to be needed for prednisone to work for CH.

I'm with Pebbles' and your husband that these aren't great options in any event; I was just saying that many, or even most, people with CH haver not had proper prescribing, so they don't know whether they work for them or not.  Properly prescribed, they usually do.  

 

[Pebblesthecorgi]

Much is written  no need to rediscover the wheel.  In the end it is a personal choice that only he should make.  

[CHfather]

27 minutes ago, glo said:

Thank you, busting is the plan.  Luckily it is "decriminalized" here (DC) though only avail in edible chocolate.  I don't see any dosing advice for that method...any ideas?  Otherwise we'll wing it.  

So DC's "decriminalization" (which you correctly put in quotes because it is actually a decision to make the arrest of users of entheogens a very low priority) has actually made it through Congress? As I recall, Congress blocked even the decriminalization of marijuana in the District.  Others will have to comment on the feasibility of busting with chocolate-based psilocybin.  I suspect that you can't get enough psilo in that form . . . but I don't know.  I do know that you can legally buy RC seeds and have them shipped to DC.

[jon019]

2 hours ago, CHfather said:

I was just saying that many, or even most, people with CH haver not had proper prescribing, so they don't know whether they work for them or not.  Properly prescribed, they usually do.  

......been doing some form of this dance for near 40 yrs now, and it continues to break my fricken heart that the absolutely true above has changed so little....especially so for O2 ...the best, highest success rate, safest, cheapest abortive....

...it is to sigh.... and one of the many reasons for ch.com, cb.org, et al. i am forever grateful for the clusterheads and their supporters who DO understand.... and reach out to others in the "family".....if we aren't our own best advocates sometimes it seems we got nothing.....

Edited January 21, 2021 by jon019

[devonrex]

To be blunt, the couple of 'absolutes' I have seen in this thread are a bit disheartening. With just a quick search 02 is effective at total or partial aborts for 70-80% of patients, there are still patients, such as me, who get little to no relief from any flow rate of 100% o2. As for imitrex, it was 100% effective for me, for about 6 months, then I began getting 1 in 4 times that it failed to do anything, up to a point when it was about 2-3 in 4 that failed to work, so with the associated cost, other considerations I stopped using them.

I am a refractory chronic ch sufferer with 5+ attacks daily, from all the other reading here I have seen many many variation in efficacy to treatments, to suggest if one thing does not work then you do not have this hellish thing,  is a bit of a slap to those who do have this and are getting fucked because shit is never 100% with ch. Other than it 100% sucks.

[CHfather]

Thank you, devonrex.  I appreciate your caution about this, and will be more careful.  I could quibble with some of your points, but what you say is wise and appreciated, and I will remember it.

[jon019]

...point taken devonrex..... your situation breaks my heart and i mean no disrespect.....there are no absolutes for clusterheads....

....sometimes the decades of frustration with the medical community and insurance companies that have failed us through indifference and ignorance gets to me.... i find it especially hurtful when some of the tools that help so many are unknown, misused.... or thrown at us in a useless manner.....and an opportunity to save so much anguish is lost...

[mit12]

I am one that imitrex not only does not work but it makes the CH worse. The weird thing is Zomig especially the nasal spray works great. My Doc does not understand why.