CHer with back pain, starting new preventative plan

[Amy123]

Hi all, first post here but I’ve been a follower of the forum for a while, having been a fellow CHer for the last 19 years since I was diagnosed with them when I was 13. Forgive me as it’s a long post but it’s rather therapeutic to get it out! Mine are episodic, with my latest episode beginning about 3 weeks ago and the one before that was in January 2020. I’m at my wits end battling these for so long, although I find myself fortunate I do not have to deal with these chronically like some, they do affect my quality of life greatly in the 1-3 months the episodes last as I’m sure all of you can empathize with.

I unfortunately have a lot of trouble getting my GP on board with oxygen therapy, relevant lab work done or even just prescribing a correct dose of a medication I’ve finally been able to convince him to let me try. I believe he has good intentions behind this since he just doesn’t have a lot of experience with CH, however it’s definitely stale mating me in my fight against The Beast. I’ve mainly only been using triptans as my main source of abort, one time was prescribed propranolol - a beta blocker - however saw no results. This was so long ago I can’t remember the dose, but knowing my doctor it was likely the minimum recommended dose from manufacturer.

My episodes are classic cluster - come on within minutes, unilateral focused on my right side always, teeth/jaw pain, feels like someone’s tearing my eye out, eyelid swells, sometimes droops, usually last anywhere from 30-45 min although I’ve had a few only last 5-15 min on occasion, some that last up to 4 hours. I always seem to be able to count on a hit about 2 hours after bedtime and within 2 hours of waking, occasionally I may get one through the day as well.

One outlier symptom I seem to have is back pain. I always know a cluster is coming because I feel it in the right side of my back first then it crawls up into my shoulder/neck, does it’s ugly thing to the head and face all while my back is doing extremely painful spasms as well. If a cluster is shadowing me, I usually feel it in the back of my right ribs and up from there into my shoulder. Sometimes I take Flexeril, a muscle relaxant, to help the back spasms. If anyone also has experience with this, I’d love to get your insight.

This current cycle has been again about 3 weeks in, started with 1 hit a day, then 2-3 and the last week it’s been 4-5, with extreme pain episodes lasting a long time. I considered perhaps I was having rebound headaches from having to abort with Triptan so often.

Wednesday AM I woke up with a slight pain in the back of my right hip and knew a cluster was coming. Immediately took 50 mg sumatriptan tablet (was out of my Rizatriptan dissolvable) and half a flexeril tablet but the beast was on within 2 minutes. I had a very strange symptom I’ve never had before with the clusters, about 5 minutes into it all the sudden I just started sweating profusely but all the pain just suddenly ceased completely for a few minutes until finally the sweating stopped but the cluster came back at a 10. It’s been a long time since going to emergency room for a cluster as I live in a small town and in the past, I usually get the headache treatment where they put me in a dark room and wait it out. But with the strange new symptom, felt I had to go.

by the time I got in front of a doctor, I was about an hour in and down to about a 5-6 pain wise, mostly in my back with some waves still going up into my head. We initially tried oxygen, I think it helped some but this would be more helpful if I could get it right when the attack was starting. it helped for the first 10 minutes then I felt like maybe it was giving me a different kind of headache.

the doctor did a bit of researching and decided that we should try the steroid Prednisone to help prevent some of the attacks short term, reduce some of the inflammation that’s clearly going on in my back and hopefully get me to a new neurologist appointment (I haven’t seen one since I was diagnosed at 13.), follow up with my GP and go from there with treatment.

after being given oxygen for about 15 min, 60 mg prednisone and another 6 mg sumatriptan, i felt much better after about 45 minutes and was discharged with a script for 60 mg prednisone for 6 days then to taper off by 10 mg a day until im off of them. And so far, knock on wood, it has at least interrupted the cycle but I’m weary of it for sure since I know this stuff has pretty strong side effects and it’s likely the clusters will come back.

i was able to follow up with my GP on the phone today. Wasn’t able to convince him to get me oxygen at home to try, but was able to convince him to put me on Verapamil to hopefully help me continue to reduce the numbers of headaches long term after I’m done with the Prednisone. However dose of verapamil seems low (for what I’ve seen recommended for cluster), at 60 mg a day.

I’m really not sure if the verapamil will help or not but I’m desperate to try anything. If the clusters do come back after the Prednisone, I’m also considering asking if we can try Indomethacin, just to rule out the possibility that it is Paroxysmal Hemicrania I’m dealing with instead. 

I did try the Vitamin D3 regimen in the past but this was while I was a struggling college student and couldn’t necessarily afford so much extra, even for my own health. I’m definitely going to try this again, would anyone recommend I wait until presnidone treatment is done? It scares me to be on it but it’s also been something of a miracle worker stopping this cycle in its tracks as it has so far.

[ThatHurtsMyHead]

Amy123,

From my read of what you wrote, you are much more knowledgeable about CH than your doc.  Great news, yet not so great.  I'd throw it out there that you might want to find another doc that has experience with CH, but better would be to see a neurologist that's knowledgeable with CH.  O2 script should be the first line of attack on the beast.  

You might get lucky, but most people on pred, our CH beast comes back toward the end of the pred taper.

A few things of note:  Check your diet.  Remove anything that is high in Tyramine (aged meats, any natural cheeses, any fruits or vegetables not immediately fresh.  Have you tried energy drinks for the attacks?  Slam an energy drink at the first twinge of an attack (then get on the high flow O2).  That should significantly help with the pain level and duration of attacks.  Make sure when you get your O2 that you stay on it for approx 10 minutes after the attack stops.  That'll usually help delay your next attack.  My attacks restart very quickly if I don't stay on the O2 longer than just the attack.

I'm sure some others will chime in here shortly with more and better info.  

J

[Ganuchi]

Hi Amy123,

Just want to say that while I do not experience back pain, I often get a weird tingling pain of sorts in my left foot (opposite side of CH) when an attack is imminent.  I was told before it wasn’t related but I know it is because it’s the only time I get the feeling and it usually hangs on for a bit once the episode is over………CH is just a little different in every one of us I guess 

[Bejeeber]

Other than the back thing @Amy123, your symptoms sure do sound classic, and very much like my experience, at least when I was "starting out". 

Yep, not just a neurologist, but a headache specialist neurologist is your ticket in the doctors dept.  So many Ch'ers have been disappointed that a garden variety neurologist can be about as informed about CH as your GP is! You could consider seeking out a telemedicine appointment with an expert.

You've probably seen that lot of CH'ers just scoot right around the roadblock of no access to medical O2 and get welding O2 (which is the same stuff) with no need for prescription. Maybe not as easy in a small town.

That 6mg triptan you got (injection I presume) was actually 4mg too much. I've been shocked that I, like countless others, can routinely abort attacks (if caught at onset), with 2mg injections. Injections are the fastest, most effective way to abort with a triptan, and splitting doses into 2mg allotments sure helps con$erve supply and lessen side effect risk.

I wouldn't recommend waiting until off of pred to start the D3 regimen, I think you should hop on it yesterday.

If the D3 doesn't completely prevent your next cycle, busting very often can , and the combo of the two can pack a powerful anti-beast punch, but for best results you do wanna initiate the busting prior to when you expect the will beast pop back for a return visit.

[Amy123]

Thank you all for the replies! It's honestly helped so much, even just to give me the confidence and arm myself with all this info to go back to my doctor and get the right treatment plan going finally.

I'll definitely check through my diet and eliminate some of those factors you mentioned, @ThatHurtsMyHead and be sure to pick up some of the 5 hr energy shots to try help abort the attacks. I'm going to have to just keep drilling my doctor about the O2 and how vital it will be to battling the beast.

You're definitely right about the pred - I'm on the full dose day 4, some shadowing but no headaches until today. I have had two break through clusters so far. Defeating! I follow up with my GP closer to the end of the month. I start a new job on Monday, can't imagine how I'll do that with these going on as they are without the O2. Next cluster to come on later this evening or tomorrow, I might just go into emerge to try to convince that doctor for the O2 script sooner rather than later!

And thanks @Ganuchi for the insight there, I'm gathering more and more that the trigeminal nerve affects so much more. I just read somewhere in my research, probably on this site   it can swell 7 times the size during a cluster so its no kidding that it's so unbearably painful for us if that is truly the case.

@Bejeeber and yes you're right about a specialist that i need! The emerge doc was shocked my GP hadn't sent me to another neurologist in 19 years. I've managed to find a couple headache clinics in Toronto that I am hoping I will be able to get a referral for. Notoriously long wait for specialists though so by the time I see them, it's likely I wont be in the episode but hopefully I am in the next cluster so they can help me! In the meantime, the wealth of information here will be so helpful! And that's great to know about the injection dose, I was able to get it in emergency room but I'm going to try to see if my doctor will switch the tablets I have for the vials of sumatriptan. The tablets, even the ones that go under the tongue, I think are pretty much useless for me. And I'll definitely start on the D3 regimen, got my vitamin grocery list ready here! and look more into busting. Funny - a couple weeks ago my friends were doing some recreationally but I felt so awful I didn't participate. Dang it, if I knew it could have helped!! I'll have to see if they still have some!

[Maryo52]

Not sure if I've weighed in but I also get pain in occiput, neck, shoulder and to the middle of my back. Oddly, my clusters first presented as "back attacks" which I noticed occurred at the same time every night. One day I had a massage, and that night they reverted to the familiar eye/head/shoulder/middle back attacks that I've come to know and not love!

[snafu]

about a week or two before my cycle starts, my neck and my trap on the side my cluster hits start to ache. then i slowly start to get discomfort in the occipital region in the back of my head. once i'm at that stage i know the cluster is going to hit in a couple of days. my shoulderblade also gets knots in the muscles, mainly the subscapularis.

greets