Suggestions? Can't stop the pain the week pre surgery

[gegibsonjr]

First a little background, hopefully it's not too convoluted. I am a chronic cluster survivor since 2003 that was formally diagnosed in 2009 with CCH and paroxysmal hemicrania/ hemicrania continua (depending on the neuro). Indomethacin has done wonders for the hemicrania but like most, no meds have worked reliably for the CCH. O2 has been the most consistent but only about half the time. 

I have also been on both the vitamin D3 and the antihistamine regimen.

This past Wednesday I was informed that I will need back surgery next Thursday so I have to stop taking the Indomethacin along with the majority on the vitamin  D3/ antihistamine regimen component. I also did my second dose for busting Thursday evening. Friday (yesterday) came with a vengeance.  A combination of coming off of the Indomethacin and the typical slapback headache, I've been in constant pain for the last 24 hours. 

My current abortives are O2, heat on the head, and red bull.

Does anyone have other suggestions for other methods to abort... this is going to be a very long 5 days with no relief until after surgery.  Thank you in advance!

[Shaun brearley]

37 minutes ago, gegibsonjr said:

 

Does anyone have other suggestions for other methods to abort... this is going to be a very long 5 days with no relief until after surgery.  Thank you in advance!

Hi @gegibsonjrsorry to hear about your impending back surgery,  I hope all goes well . My only suggestion would be triptan injection if you have them . It's not going to block your busting as I'm guessing your not going to bust whilst in hospital  and I'd start using Ginger capsules everyday.  They work so well for the shadows 

[Bejeeber]

Hi @gegibsonjr, what @Shaun brearley said, and this is not exactly an additional suggestion, more just a mention in case you haven't seen this discussed before - vaped DMT is proving to be an especially effective CH abortive.

I'm pinging @spiny here because she knows all too well the ins and outs of back surgery for a CH'er and may have some pointed advice on what to demand in the anesthesia dept.

Heck for that matter, the legendary and god-like  @Dallas Denny just had major neck surgery, and could conceivably have a pointer. Gee, everyone is doing it - even our own bum also god-like @jon019 may know a thing or 3 about CH/back surgery. 

(FYI, @jon019 was referred to as a bum for a sec there in a term of endearment American sense, not the UK meaning)

[CHfather]

In this document, under the heading Treatments without O2 or other meds, some possible abortive strategies are listed: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/    I'd say that brain freeze and some variation of standing/sitting in very hot water seem to be the most recommended.

Be absolutely sure that there's O2 for you when you come out of the surgery.  I see Jeebs has just mentioned the surgery experts.  Some anesthetics will fire up CH in a big way.  I think these are mostly local ones, particularly epinephrine.  The experts will know about that, too.

17 minutes ago, Bejeeber said:

@jon019 was referred to as a bum for a sec there in a term of endearment American sense, not the UK meaning)

I am old enough that the term "Beloved Bums" has a very evocative significance for me. For Shaun brearly, it probably has a very different meaning.

 

Edited August 19, 2023 by CHfather

[gegibsonjr]

Thank you all for the input. @Shaun brearleyI stopped taking triptans several years ago as they became very ineffective, i would definitely try them again if i had them now.  @Bejeeber I have heard of using DMT, although I need to look into this further.  Thank you for the references to those that have been in similar situations.  @CHfather thank you for the link to your site up, excellent information! The hot shower is definitely a go to, unfortunately no help this time (cold is a trigger for me).

On the O2 coming off anesthesia, I agree 100% as I've been full blown 3x after procedures. Unfortunately, even instructions from my neuro didn't help facilitate the high flow usage  The last time, i was given a rebreather mask at 4 lpm.  Fortunately my wife was there and turned up the regulator. I'll be attempting again next Wednesday with the instructions from my neuro and how did the best. 

As always, all input is greatly appreciated.

[Rod H]

Prednisone taper?

[Shaun brearley]

3 hours ago, CHfather said:

 

I am old enough that the term "Beloved Bums" has a very evocative significance for me. For Shaun brearly, it probably has a very different meaning.

 

Wow @Bejeeberthought you was being nasty to are beloved @jon019 lol , but @CHfatherhas clarified Bum in the US means something totally different than it means in UK 

[gegibsonjr]

@Rod H I've been prescribed prednisone for other issues and unfortunately it hasn't had any affect on the attacks.

[CHfather]

1 hour ago, gegibsonjr said:

stopped taking triptans several years ago as they became very ineffective, i would definitely try them again if i had them now.

If you can't just call your doctor's office and ask for a quick Imitrex prescription . . . my daughter (the person with CH in my family) has had success going to a walk-in clinic and getting an Imitrex prescription. She is fortunate in that she has a letter from her doctor saying she has CH, so she didn't have to worry about the diagnosis being accepted.

If you do get Imitrex, remember this: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

[jon019]

[CHfather]

6 hours ago, gegibsonjr said:

I've been prescribed prednisone for other issues and unfortunately it hasn't had any affect on the attacks.

I would only mention that misprescribing related to CH is very common -- verapamil usually too low to be very helpful; Imitrex much more than people need while triptan pills are almost always too little . . . .   Your prednisone prescription (which I understand wasn't actually for CH) might not have been enough for CH.  Some people do get relief from a standard pred "dosepak," but the recommendation from CH experts is more like 21 days with four days at the highest level (typically 60 mg).  

[gegibsonjr]

@CHfather I haven't had dosage of 60 mg, so that very well could be right.  I was on Prednisone for my back issue for 4 months at 40 mg per day though.  I agree with the dosage issue as I ran into that with Verapamil as you reference.

I definitely appreciate all of your input and your information on this site. 

[Bejeeber]

Just piping in to back @CHfather up on the typical effectiveness of that 60 mg pred level in a burst/taper (then of course watch out for a return of attacks when the dose gets down to around the 40 mark or so).

[CHfather]

Sometimes prednisone dosage is related to weight.  The actual CH recommendation is 1 mg per 1 kg of body weight, to a maximum of 60mg.  60 kg = about 135 pounds, so you'd be fairly light not to get the full 60mg. 

One more quick "dosage" thing. If the Red Bull works, that's good.  I note that many small energy shots, such as 5-Hour Energy, have a lot more caffeine in them than an 8-ounce Red Bull (roughly twice as much), and can be drunk down more quickly.  On the other side of this "dosage" issue, some people get good results from a strong cup of cold coffee along with a taurine pill, and some people prefer energy drinks that are probably healthier than Red Bull or 5-Hour, such as V-8 energy drinks.

Wishing you the best that this surgery turns out well!!!  

[gegibsonjr]

@CHfather Great suggestion on the coffee and taurine pills, is definitely more healthy. 

I appreciate the good words, will be going into surgery in about an hour. 

[Bejeeber]

Best of results to you @gegibsonjr!

Other CH'ers here have had successful back surgery - ready for you to join that club!

[gegibsonjr]

Been offline for a little bit, but again, I appreciate everything before the surgery.  Recovery is going better than expected.  Getting the staples out on Wednesday and leaving Thursday for the conference.  Looking forward to hopefully meeting some of the online people here.