new here/pain help requested

[AchyBreakyHead]

Hi, I’m new to the group/website…Seeking any and all advice on pain relief, and hoping to connect with others who have both chronic CH and chronic migraine.

Recently diagnosed with chronic CH but, at age 62, I have 50 years of chronic migraine and occipital neuralgia experience following a TBI and fractured neck. CH, of course, is my worst head pain. I’m now on SSDI (permanently disabled) after “soldiering through” decades of trying to hide my pain from employers. Even without the extra stress of a career, the DAILY CH is still so debilitating and discouraging. I find strength and hope, though, in the hours in between my worst pain attacks. : )

Helps some: Triptans, Emgality, lidocaine nasal spray, Qulipta, Neuro Energy & Focus caffeine gum, neck pillow, Penetrex muscle rub, ice packs.

Doesn’t help: Oxygen therapy (bummer!), nerve blocks (have had for migraine, not specifically for CH yet), ketamine hospitalization (x2), many other RXs, PT, various neurostimulator devices, etc.

Any suggestions? Thank you, and hoping to meet some of you at the October conference.

[Bejeeber]

Hi @AchyBreakyHead - sorry you have the need to be here, but welcome.

You've tried a bunch of stuff I see. Good news is there is more to try, and it's better stuff.

One thing to get out of the way first, is whether your attempts with oxygen were optimized or not? High liter flow (like 15 lpm or higher) with a non-rebreather mask is widely considered a minimum requirement by those in the know, so if you were prescribed and tried lower flow (like 8 to 10 lpm) with a rebreather mask it's not surprising it was ineffective. You'll find more about this and plenty of other very pertinent info in the Basic non-busting information linked to below.

Meantime busting, which is a much more effective preventive than any prescription, is described at  the blue New Users Please Read Here First bar at top of the page here ^^.

My suggestion would be to check this info out, then post any further questions you might have!

https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/?do=findComment&comment=61401

 

[AchyBreakyHead]

@Bejeeber

Bejeeber, thank you very much for your quick and thorough response.

I’m rare (maybe not always a bad thing but, in this case, it may be!) - For what it’s worth, I have learned that I’m often an unusual patient. For a recent example, just a couple of months ago, I found out while hospitalized for ketamine treatment that I was setting off alarms because my heart rate was dropping into the low 30s during my morning CH attacks. Not even my neurologist had heard of it, but I found in my own online research that a drop in heart rate can be a rare side effect of CH. I’ve since had testing for my heart and it’s fine, which likely proves my suspicion of a rare CH side-effect as accurate. I should mention I’m also female, which is somewhat rare in itself, compared to the percentage of CH sufferers who are male.

Oxygen therapy - I’m thankful to have found this site and I did a lot of reading before I tried home oxygen…so I learned about the importance of a non-rebreather mask and other details. In fact, I found myself educating the oxygen distributor about oxygen for CH but, I’m sure that unfortunately may not come as a surprise to you. I also had tried oxygen when hospitalized for ketamine treatment..while it wasn’t a miracle, I thought it maybe helped a little then. Possibly just a placebo effect because I wanted it to work so badly. (It was during a hospital stay for ketamine that CH was finally diagnosed. I believe I’ve had it for years, and simply thought CL was my “worst migraines.” The diagnoses alone is worth so much. When I read online that CH is considered the worst human pain -- even worse than gunshot wounds, amputations and childbirth -- I felt sad, yet also validated.) When I tried oxygen at home, level 15 with the special mask, it sadly did not help. I breathed deeply, etc., trying to follow the tips found on this site.

Rare again? - I suspect I may be in the 15-20 percent of CH sufferers who do not benefit from oxygen therapy. That said, I’m certainly open to trying again. I hope to attend the upcoming conference. Maybe someone there could help me try again (my clusters are daily). The tanks, even smaller ones, are heavy and cumbersome to get to my second-story bedroom. Maybe not at all an issue for a lot of people but, as a 60+ female, it’s unfortunately an issue for me. I’m mentioning this in hopes that you/others may have suggestions.

Busting - I admit I didn’t realize what “busting” was until reading more on the site yesterday. As much as I’ll try nearly anything, I’m a bit apprehensive to try it. The reasons are (1) because I don’t know how to get what’s needed and safely and legally try it (maybe you or someone else could educate me on that?), (2) I have drug allergies, which understandably causes me to be reluctant to try anything new. That said, I need relief/improvement and am certainly open to at least learning more about this potential option.

Travel/Driving - On a slightly different topic, are there strategies for traveling with chronic CH? Seems most of what I’ve found so far is more for episodic CH. I’m especially interested in learning of anything to help in the case of driving. I have read that a lot of people keep oxygen in their car but, if oxygen doesn’t help me, is there anything else I may try (that I’m not already doing) to quickly minimize the pain/effects? I see no option other than nearly immediately pulling off the road (at a safe and ideally populated public location...that I can quickly find) because I reach maximum pain level within about 5 minutes. Any suggestions to speed recovery time?

Thank you so much for your time, concern, and valuable input!  : )

[Dallas Denny]

@AchyBreakyHead Bejeeber asked the question I would have and provided some reading material for ya so I'll just say welcome to the community and sorry ya had the need to join us!

Love your choice of screen names!! I spent a bit of time doing line dances to achy breaky heart...lol

[Dallas Denny]

@AchyBreakyHead Guess we were typing at the same time young lady....old fart of 79 here!

I would urge you to follow thru and attend our patient conference in Chi Town....you'll leave with a whole bunch of new friends that totally understand your pain!!  Our oxygen guru @Racer1_NC will be doing O2 demos, if he can't figure out a way to make it work for you then I'm afraid you are one of the rare folks that it doesn't work for!!

DD

 

[AchyBreakyHead]

Thank you for the kind words and welcome, Dallas Denny. I may have found my tribe...my close friends and family try to sympathize but they simply can't emphathize like fellow sufferers. Btw, do we call ourselves sufferers here, or survivors, etc.? 

I'm not sure I've danced to the song but, when trying to think of an appropriate and cute screenname, the song title just came to me. : )

[Dallas Denny]

@AchyBreakyHead ironic that you would say "tribe" because that term is often uttered at our conferences!!

There's a piece on our sister site ch dot com called "pain vs suffering" that covers your question.....we are survivors!!!

It's really funny that achy breaky heart would come up today......as I said, Im 79 and that song came on a YouTube video my Bride was watching and I got up from my ez chair and started doing the "freeze" line dance!!  Lol!  First time I've done that dance in MANY years but I was nailing it!!!

DD

[AchyBreakyHead]

@Dallas Denny @Racer1_NC  @Bejeeber

I would be so estatic and eternally grateful if oxygen worked for me! Maybe I just need a little help. Fingers crossed I can make it to the conference.

Thank you for your time and efforts on this site (including patience with the newbies) and the conferences. Hope each one of you has a great day. 

 

[AchyBreakyHead]

@Dallas Denny

LOL, I'm old enough to relate to you with the Freeze dance! Glad to hear you were sharing your slick moves with your bride. I'm sure she loved it.

What is the sister site you referenced? I am reading all I can about CH ...there's a lot of crossover with my chornic migraine and occipital neuralgia (and just yesterday my neuro scheduled additional testing for my C4-C5... as a neck problem found on MRI may also be giving me cervicogenic headaches.) I'm truly a "head case" (LOL), but still try to find humor in it all.  I've been to Johns Hopkins and three other major university hospitals...but only recently diagnosed with CH...so I'm adding CH knowledge to what I've learned in the past about other severe headaches. 

 

[Dallas Denny]

@AchyBreakyHead The site is clusterheadaches.com but I have to admit that I haven't logged in there in several years....there's a wealth of info there but I'm sure the activity there has suffered as we have since Zuck created "the Book"! Most of us that have been here since we went live in 2009 came from there!

[AchyBreakyHead]

@Dallas Denny

thank you.