New Clusterhead Seeking Advice on Oxygen and Rebound Headaches

[standardized17493]

Hi all, six weeks and counting into my first bout with cluster headaches, and I have been grateful beyond words for all of you sharing your experiences and recommendations; they have been extremely helpful while I try to figure out how to manage this nightmare.

I've been tackling it from multiple angles (including the D3 regimen; also going to try the anti-histamine supplements since Benadryl has proven oddly effective), but I wanted to ask for your advice on oxygen and rebound headaches.

I finally got some tanks a few days ago, and with the specialty cluster mask + a regulator that goes up to 25 L/min + deep in/exhalations, the relief has been significant while I'm on the oxygen. Unfortunately, the pain returns shortly after coming off the oxygen--possibly even worse than the pain was beforehand. I've tried remaining on the oxygen for longer, since I saw some posts suggesting that, but I wasn't sure how long is "too long" and whether to stay at a full 25 L/min for the entire time. (It also feels like the rebound headaches might be worse at 25 L/min than at 15 L/min, but I don't have enough sessions to be sure.)

Does anybody have any advice on how to prevent rebound headaches? Enough of a pattern is forming that I'm starting to lose hope in oxygen as a viable source of relief, which is quite dispiriting after the frustration it took to obtain and the general struggles I've had enduring these past weeks.

Thank you!

[Dallas Denny]

1 hour ago, standardized17493 said:

Hi all, six weeks and counting into my first bout with cluster headaches, and I have been grateful beyond words for all of you sharing your experiences and recommendations; they have been extremely helpful while I try to figure out how to manage this nightmare.

I've been tackling it from multiple angles (including the D3 regimen; also going to try the anti-histamine supplements since Benadryl has proven oddly effective), but I wanted to ask for your advice on oxygen and rebound headaches.

I finally got some tanks a few days ago, and with the specialty cluster mask + a regulator that goes up to 25 L/min + deep in/exhalations, the relief has been significant while I'm on the oxygen. Unfortunately, the pain returns shortly after coming off the oxygen--possibly even worse than the pain was beforehand. I've tried remaining on the oxygen for longer, since I saw some posts suggesting that, but I wasn't sure how long is "too long" and whether to stay at a full 25 L/min for the entire time. (It also feels like the rebound headaches might be worse at 25 L/min than at 15 L/min, but I don't have enough sessions to be sure.)

Does anybody have any advice on how to prevent rebound headaches? Enough of a pattern is forming that I'm starting to lose hope in oxygen as a viable source of relief, which is quite dispiriting after the frustration it took to obtain and the general struggles I've had enduring these past weeks.

Thank you!

Welcome to the community @standardized17493 but sorry you had the need to join us!

My oh my, you are indeed a newbie clusterhead!!  Do you have a doctor's diagnosis of cluster headache?  If so, congrats for getting the dx so early in your journey with clusters.....the Beast has been my episodic companion for goin on 43 years and it took 7 years for me to get the diagnosis!!!

I'm going to assume that you do have a docs dx since you've obviously managed to get an O2 script and have sourced the clusterO2mask and a 25 psi reg!!

So, sounds like you've got all the right equipment and it's evident that you've researched the correct breathing technique with your "deep in/exhalations" comment.

In the past 16 years I've only run in to 2 clusterheads for whom O2 didn't work or made the attack worse so what you are describing is rare in my experience!!

The first thought that comes to mind is the possibility that you've been misdiagnosed!!

Clusters are just 1 of 5 types of headaches under the TAC (trigeminal autonomic cefalalgia) umbrella.

Please relate the specifics of your attacks, timing, duration, ect, and if your doc prescribed a trial of gabapenten to rule out hemicrania continua or paroxysymal hemicrania.

Dallas Denny 

[standardized17493]

25 minutes ago, Dallas Denny said:

Welcome to the community @standardized17493 but sorry you had the need to join us!

My oh my, you are indeed a newbie clusterhead!!  Do you have a doctor's diagnosis of cluster headache?  If so, congrats for getting the dx so early in your journey with clusters.....the Beast has been my episodic companion for goin on 43 years and it took 7 years for me to get the diagnosis!!!

I'm going to assume that you do have a docs dx since you've obviously managed to get an O2 script and have sourced the clusterO2mask and a 25 psi reg!!

So, sounds like you've got all the right equipment and it's evident that you've researched the correct breathing technique with your "deep in/exhalations" comment.

In the past 16 years I've only run in to 2 clusterheads for whom O2 didn't work or made the attack worse so what you are describing is rare in my experience!!

The first thought that comes to mind is the possibility that you've been misdiagnosed!!

Clusters are just 1 of 5 types of headaches under the TAC (trigeminal autonomic cefalalgia) umbrella.

Please relate the specifics of your attacks, timing, duration, ect, and if your doc prescribed a trial of gabapenten to rule out hemicrania continua or paroxysymal hemicrania.

Dallas Denny 

Thank you for your response! I have indeed seen a neurologist, who wrote the prescription for oxygen, diagnosed me with cluster headaches, and ordered blood work (result: vitamin D deficiency plus a couple other abnormal readings around inflammation) and an MRI (result: totally fine). I have to admit, though, there have been a few times where I've wondered if I'm facing something other than a cluster headache.

Other than knowing that the pain definitely gets worse in the later parts of the day, I can't actually identify starts or ends to discrete, separate headaches. It's much more of a constant pain that just varies in intensity, which seems different from how most people discuss cluster headaches (in terms of regularity and having periods in-between where they feel okay).

Admittedly I also sometimes wonder if my neurologist doesn't have a ton of experience with these types of headaches that are more rare. He didn't have any recommendations for filling the oxygen prescription, I actually had to ask him about trying oxygen a few days after our appointment, and the front office person said that he'd never had a cluster patient there before. Unfortunately every other neurologist in my city was booked until August, so I didn't have many other options. I'm a couple hours from DC, so I sometimes still wonder about getting a second opinion from someone up there, especially if this might actually be something different from cluster headaches. (He never mentioned anything about other trigeminal headaches or gabapentin.)

I'm also happy to lay everything out, since the symptoms have kinda shifted over time (and apologies if this winds up being overkill)!

 

Week 1

Not a cluster headache at all, actually, but a vestibular migraine (we think). Came on out of nowhere as intense vertigo, motion sensitivity, and some ringing in the ears, but no actual headache. 99% sure that the cause was months of stretching myself too thin with work and international travel; I just reached a point of getting so overwhelmed and not being able to mentally rest, and it felt like I just hit my breaking point.

Week 2

Dizziness and other migraine issues started to subside, and in its place came the constant pain at the back of my neck and a weird numbness/pressure in the left side of my face, especially the jaw and cheekbone (and less behind the eye). PCP had me go to the ER because I reported that my mouth would sometimes hang open from the pain. CT scan was fine, and the steroid they gave me relieved some of the pressure behind my eye.

Oral triptans also made things significantly worse. I can't remember if it was sumatriptan or taratriptan (I tried both), but one of the two made the pain so brutal that I almost couldn't stand (and I have a pretty high tolerance for physical pain). Nurtec provides some relief, but it's fairly short-lived.

Week 3(?)

Short-term prednisone course provided some relief, though I of course had to taper off. Symptoms also started to gradually move down my face (while staying present in the back of my neck), residing a lot more in the left jaw than further up the face. Sometimes would be a particularly painful sort of throbbing.

Week 5(?) to Present

Facial pain continued to shift downwards into my neck. Weird knot in the left side of my neck for a few days, though it never got particularly painful; just odd, especially since the pain would sometimes extend down into my upper collarbone area on the left side.

Evenings are still quite tough, but even though the symptoms have moved multiple times, it does at least feel like I'm very very slowly improving? The vitamin D regimen feels like it's helping, cardio helps if I can push past the pain and go to the gym.

I'm in a pretty good amount of pain right now, but it's odd to note that it doesn't feel quite as unilateral as it used to. Back of the neck is still the epicenter, but the frontal pain now feels like it's more both jaws and both shoulders--again, the weird "working its way down and out" metaphor comes to mind.

[Dallas Denny]

So, it's great news that you've seen and been diagnosed by a neurologist and good that you've had an MRI to rule out other nastiness!!  But to be honest, this does not sound anything like clusters!!!

However, it does sound more like one of the hemicranias.....the good news is that gabapenten is an effective pharma solution in most cases!!

It also sounds somewhat indicative of Trigeminal Neuralgia but I'm unsure about treatment options for that disorder.

I would most definitely try to get a 2nd opinion, preferably from a certified Headache Specialist Neurologist!!

Another long time member here, @CHfather, is a supporter of his clusterhead daughter who lives near DC so he might be able to chime in when he sees this thread and give you some direction on finding another neuro in your area.

DD

[standardized17493]

21 minutes ago, Dallas Denny said:

So, it's great news that you've seen and been diagnosed by a neurologist and good that you've had an MRI to rule out other nastiness!!  But to be honest, this does not sound anything like clusters!!!

However, it does sound more like one of the hemicranias.....the good news is that gabapenten is an effective pharma solution in most cases!!

It also sounds somewhat indicative of Trigeminal Neuralgia but I'm unsure about treatment options for that disorder.

I would most definitely try to get a 2nd opinion, preferably from a certified Headache Specialist Neurologist!!

Another long time member here, @CHfather, is a supporter of his clusterhead daughter who lives near DC so he might be able to chime in when he sees this thread and give you some direction on finding another neuro in your area.

DD

This is helpful to keep in mind! After some internet digging, I wonder about hemicrania continua as a possibility, though I haven't had any of the sinus or tear stuff that seems core to the diagnosis. 

But still, I'm gonna check with my neurologist tomorrow! Especially if he's able to prescribe indomethacin, since that seems to be a key differentiator.

And either way, I'll probably start calling around DC for a second opinion, on the off chance I can find anybody accepting new patients who isn't booked for months. Especially if CHfather has any good tips (thank you for tagging him!).

[Dallas Denny]

Oh shit @standardized17493, my bad bud!!  I definitely meant indomethacin and not gabapenten!!

[Dallas Denny]

@standardized17493 I'm not positive about the hemicranias but with clusters the autonomic symptoms can vary from patient to patient....some folks get a stuffy nose while others have a runny nose....some experience a weepy eye while others don't!!

FWIW, I do personally know a young lady with hemicrania continua who has had great success utilizing the "clusterbusters protocol" with Vitamin M as her busting substance!

[CHfather]

The two neurologists we saw in DC both misdiagnosed my daughter's CH, and when it was diagnosed (by us), the second one mistreated it.  So no advice, really.  People generally recommend that a headache center is going to be your best bet, and I'm sure Georgetown and Johns Hopkins (and maybe GW) have them.

There are some things that sound like you might have a hemicrania.  Oxygen and triptans not working, for example (though I can't say about actually making things worse), and the constant pain. So it's worth checking out, but typically hemicrania is a CH lookalike, and you don't have typical CH symptoms.  Indomethacin is the only diagnostic for hemicrania.  If it works, you have it; if it doesn't you don't.  BUT be sure you get a proper course of indo -- you seem good at googling (or AI-ing), so look up something like "What is the correct initial dosage of Indomethacin for hemicrania?"  ChatGPT gives the answer below, which I think is correct, but I would look around to make sure -- and not trust a neurologist to get it right (even though s/he has a book or an online resource that will tell him/her what's right).

"25 mg by mouth three times daily, taken with food. That gives a starting total of 75 mg/day. If symptoms do not improve clearly within a few days (sometimes even within 24–48 hours), the prescribing clinician often increases the dose—commonly to 50 mg three times daily, and sometimes higher (75 mg x 3) for a short diagnostic trial."

Busting and hemicrania. From what I have seen here, it typically helps for a day or two or maybe a iittle longer, but then wears off, so people with hemicranias have to do a lot of busting to keep it at bay. But maybe I'm just not remembering other situations in which the results from a more standard protocol were good, as Denny described.

That doggone D3 regimen sure seems to help a lot of "headache" conditions.  I'd definitely keep doing that.

 

[standardized17493]

No worries, @Dallas Denny! And I'm definitely gonna keep that in mind as another option to explore; I'd previously chatted about it with a trusted friend who has access, so I might still look into it for an upcoming weekend. (I'm generally quite skittish about those types of substances, but a lot of that has gone out the window with my desperation.)

And many thanks for the advice, @CHfather; hopefully I won't need to find a second opinion in another city, but if it comes to that, those are some helpful names to start with.

I've got an appointment with my neurologist tomorrow morning, so fingers crossed he's up for at least a short trial of indomethacin!