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. 

[dhuddly]

@AchyBreakyHead Sorry you're here friend. I too have a past TBI and am curious how long ago yours was and if ch started after or before the TBI? 

[AchyBreakyHead]

@dhuddly

My TBI was decades ago…I nearly died in a motorcycle accident going 50 mph on a concrete road, w/o a helmet, at age 12. It’s a miracle I survived and don’t have a disfigured face (I do have some second-degree burn scars on my body but fortunately almost nothing on my face…but only b/c they scraped my face twice a day, in very painful procedures.) Although I had a TBI, I fortunately didn’t lose speech or have to relearn to walk, etc. The severe headaches started soon after my hospital stay …or I also had them in the hospital, but being unconscious or semi-conscious —combined with pain meds— possibly kept me from feeling the severe headaches. I lived in a very small town then (small hospital), and honestly didn’t know enough to advocate for myself until my college years. Since my mom had what she called “sinus headaches,” we thought mine were the same. Wrong! I was finally diagnosed with chronic migraine at age 20, but I suspect I also may have had CH all along. I know there are far worse TBI stories than mine…maybe yours? Please share your experience, if comfortable doing so. I know not everyone with severe headaches including CH has had a TBI, but it certainly makes our cases complicated and intriguing, doesn’t it? 

[CHfather]

When oxygen doesn't work and triptans only "help some," it raises my curiosity. Have you used an injected triptan (Imitrex)? Did it not stop the pain pretty quickly?  (It sounds to me like you are using O2 correctly enough that it ought to be providing some benefit, and I don't believe that it's ineffective for 15-20% of people in that circumstance.)  You mention periods between your "worst pain attacks." Is there always or nearly always some level of pain that sometimes breaks out into much worse pain?

Regarding busting, seeds (rivea corymbosa seeds, most often) are very effective and there is typically no "trip" from them.  They are legal to purchase and possess in most US states, and preparation is simple: crush, soak in water, drink.  People have found Schmerbal's Herbals to be a good place to get them (half an ounce would be more than plenty):  Rivea corymbosa, Untreated Ololiuqui Seeds ~ Schmerbals Herbals®

[AchyBreakyHead]

@CHfather

CHFather, thanks for the info.  You guys on this site have been so great to take an interest in my case. 
 

I apologize for the length of this reply, but if you can help me— or if we can help someone else reading this — it will be more than worth it!  

I have taken Imitex injections in the past, but long before this recent CH diagnoses. I currently take triptan pills and use the 100 mg caffeine gum for some faster help before the triptan pill can kick in. Don’t know why my headache specialist didn’t suggest an injectable triptan, but she may have her reasons. I will ask  

Yes, my situation is complicated by the various types of headaches. I believe I do indeed have CH (obviously so do my doctors) but I’m rather upset it took so many years to properly diagnose. I think there’s a slight chance I could have something else other than CH (and I have a feeling you’re possibly thinking this). Whatever it is, it’s the worst pain imaginable.
 

 I have told doctors for decades that I have at least two —  if not three —types of severe headaches. I don’t even know what to accurately call them anymore, so for now I’ll try to call them all “headaches.”

I have a continuous headache  that honestly never goes away. It’s pain level 5/6 (I previously called this migraine). Not overly pleasant, yet nothing compared to the 8-10s. I formerly called the 8-10s my “worst migraines,” but now I think they’re CH.

The one and only time I didn’t have the continuous 5/6 pain — in 50 years!— was for a few hours during hospitalization for ketamine a couple months ago. I was thrilled and truly didn’t know what my head should feel like…as I’d had a permanent headache since age 12, following a TBI. Sadly, the relief only lasted a few hours.  It’s interesting I found relief, even if for only a few hours, but it’s perplexing that it couldn’t be duplicated the second time I was hospitalized for ketamine (the two hospital stays were a month apart.). 

My BP can rise to near and above 200, and heart rate can reduce to low 30s, as exhibited during the recent hospital stays. These are the only times I’ve ever been hospitalized for headaches.
 

With the 8-10 headaches, especially 9/10, I sometimes rock back and forth (mildly) in pain and tears come to my eyes from the pain (along with runny nose, slightly swollen eye, etc)…sometimes I slightly moan..,and I’m normally a quiet person in pain…even after an unrelated, very serious 16-hr Johns Hopkins surgery, I was quiet,)

 

I have been borderline suicidal during the worst headaches —not that I planned to hurt myself, but I was in so much pain that I thought if I fell asleep and didn’t wake up, it might not be a bad thing because there would be no more pain. That’s not like me at all to think this way! As terrible as the pain is, I want to live! 
 

I had a recent MRI just a few weeks ago. It was mostly normal except many t-2 flairs which worsen with each MRI…the specialists say my headaches are so severe that oxygen isn’t getting to my brain. I SO believed oxygen therapy would help, so I do wonder if I didn’t do something correctly?  Or I have yet an additional diagnosis to come? 
 

Sleep- I know for sure that sleep (both a lack of, and even too many hours) impacts my headaches. I’ve had two sleep studies, and now use a CPAP nightly. When my headaches went to an entirely horrible level about 8 years ago, it’s also when my sleep became terrible. That can’t be a coincidence. My sleep doc didn’t believe how bad it was (can fall asleep but wake SO many times) until both of the in-lab sleep studies proved that I never reach deep sleep. I’m convinced my sleep problems correlate with my headaches. Which is the chicken or egg, I do not know. 
 

What can you tell me about a sleep-CH connection? Oh, I failed to mention that the best sleep in decades was one night recently in the hospital! I forgot one little piece of my personal CPAP, so it wouldn’t work…so I had to use the hospital’s huge and loud CPAP/ventilator monstrosity. I had the best sleep in decades, and my theory is this: it helped because it included oxygen! Yes, I slept through the night without waking once. Yes, I was on some major drugs, too, but when I went back to my own CPAP (w/o oxygen), the sleep issues returned the next night (and remained). Sleep and oxygen are key…at least in my specific case. I am scheduled to see the sleep specialist in the next month. My neurologist/headache specialist thinks they’ll likely want to do a new sleep study soon. It’s my understanding that oxygen can be added to CPAP…and I’m thinking maybe this might be more effective: possibly prevent the headaches, rather than try to treat them with oxygen after they occur. Interesting, right? Thoughts?   

[AchyBreakyHead]

@CHfather

 

CHFather, in that giant previous response to you, I didn’t mention that my CH (8-10 pain) arrives almost exactly at 5 am daily, and I sometimes get a second afternoon attack (usually 2-3 pm, but definitely not as on-the-dot, or as consistent, as the 5 am attacks.) 

[Dallas Denny]

@AchyBreakyHead I'm gonna jump in and ask @CHfathers next question for him based on your response to his comments...lol....has any of your docs ever prescribed a trial of Indomethacine?

It definitely sounds like you have multiple headache disorders and some of what you're describing sounds like Hemicrania Continua could possibly be one type (and it's also under the TAC umbrella with clusters), and folks with HC respond well to that pharma med!

DD