CaptChaos

Hi all, I've been on oxygen treatment for my episodic CH since 2020 and it's been a lifesaver. My Rx is for "Oxygen with a non rebreather mask. Use at 10-15L/minute at onset of cluster headache for 5-10 minutes as needed throughout the day". It's been over a year since my last episode and when I went to reorder my two M tanks my supply company told me that they no longer do tanks and regulators for CH diagnosis. Rather, they have a new high-flow concentrator that will fill tanks for you at the house. After a lot of back and forth (no resolution) I decided to try a new oxygen supply company as I do not believe there is an effective concentrator for CH, but please correct me if I am wrong. Now, my new O2 company is giving me tanks but they are only allowing 4-6 E tanks at a time. I go through an entire E tank in a day. When I called to refill today they told me I am using way to much oxygen for CH and that I need to try the concentrator. I am only using 10/L minute flow at this time. My CH will go away after 4-6 minutes of O2 and I will breathe for an additional 10-20 minutes depending on oxygen supply. Am I missing something? I'm thinking of having my neurologist rewrite my Rx to specifically state I need pure (100%) oxygen and that concentrators are not an option. Would this be beneficial in your opinion? Lastly, bonus if anyone in here has a great O2 supplier in Minnesota or Wisconsin. I've tried Adapt Health and Liberty Oxygen and I'm curious if there are others before I go the welding route. Thanks!

Thanks for all of the replies. It's certainly been a different beast this time around. I don't usually get day time hits (thankfully) but I will deal with occasional shadows that I'd classify as a 1-2 on a pain scale. Ginger tea helps with those and Tylenol will block it if all else fails. I've stayed on O2 anywhere from 5 - 25 minutes after the pain subsides. Last year I would only get one, maybe two wakeups a night but this year is closer to 5-7 each night. My dentist has suspicions I have sleep apnea, I will look into this. Thanks! I've noticed this as well, my bag doesn't fill as fast even when set at highest flow. It still works for me but tends to take closer to 7-8 minutes to work. This seems right. This time around I'm using 15LPM until the pain subsides then I go down to 10LPM and breathe a little slower for 8-10 minutes. If anything it helps me fall back to sleep quicker.

I have noticed the same thing, lower tanks are less effective.

I can still successfully abort a headache in 4-7 minutes at 15ml flow. It's just that the headaches rebound after 60-120 minutes throughout the night until I get up for the day.

Just out of curiosity, how much oxygen are you all using during a cycle? I'm not finding it as effective now and I'm going through 2 M tanks a week. Is that a lot/normal/low in your experience?

Thank you everyone for the advice, I appreciate it. I was able to find some non-caffeinated ginger tea and I also have a jar of powdered ginger I can tinker with. Hopefully I get lucky with a night of remission.

I actually went to school with someone in the family that owns Ginger People. I'll have to give him a shout.

I had coffee after my second shot this AM and that helped curb the shadows for a few hours. I've been avoiding caffeine since assuming I'll probably need it later.

Hi Busters, I had the unfortunate event of running out of O2 last night during an attack. I had to use Imitrex as an abortive measure around 2am my time with success. When I got up this morning all was good until another bad CH hit me and I had to take another Imitrex shot around 7am. My new O2 tank won't be here until tomorrow, I'm not able to use Imitrex anymore and I have terrible shadows going on. What are your emergency go-tos in this situation? I have Monster energy drinks. Anything else? Thanks! CC

My neurologist prescribed Verapamil (120mg 2x/day) at the onset of a cluster period when I first saw him five or six years ago. Now that we know my body handles it well I still take the same dosage but I start it in the spring before any sings of a cluster since my CH usually stats in April. This seems to help a lot since it takes a while for verapamil to start working effectively. I saw a new headache specialist this year and she prescribed a tapered prednisone treatment on top of verapamil at the first sign of oncoming CH. I have had pretty good success with limiting the frequency, severity and duration of my headaches when using one or both. I seem to get much less of the teary eye, runny nose symptoms during attacks when I am on these drugs. Hopefully you found success with your treatment.

UPDATE: My PCP was not able to prescribe me oxygen and went as far as saying that no PCP at the clinic had heard of prescribing O2 for this. He said that O2 therapy is a specialty treatment for CH and needs to come from the Neuro. I asked for referal to a headache specialist since my Neuro specializes in Epilepsy and seizures. In all fairness, I have not seen my PCP for this condition in the past so I'm not surprised. He did give me a script for Prednisone to help break what he's calling medication overuse headaches from taking too many OTC drugs to relieve minor pain. I'm also on day 9 of Verap so hopefully that kicks in soon. I am now at the maximum amount of triptans allowed in a 30-day period so I'll be dealing with these on my own. I have found some minor relief with 5 hour energy shots and heavy breathing but that seems to only delay the full attack.

Thank you everyone for the advice and suggestions. I am calling around this morning looking for medical supply companies that deliver to my residence. I have a good relationship with my PC doc and I'm hoping that I can use the resources here to help him understand what I need him to do so I can get tanks. I'm lucky enough I work from a home office so having the large tanks will not be that much of a hassle. I have insurance through the state but I don't have any problem paying out of pocket to try something different to bring relief. My doctor did prescribe me vials of Imitrex but I had a hard time injecting myself with needles. I see there are a couple of companies that now offer 4mg and 3mg triptan auto-injectors but my neuro said they aren't available in my area or through my insurance. I will look into splitting the shots. The main concern my neuro had with O2 seemed to be storage and safety hazards. I asked about O2 therapy at the end of my last CH episode and he suggested waiting until the next so I wouldn't have full tanks lying around the house unsecured.

Hello, I'm Chris and this is my first post on CB... I've been following the forum for a while in search of other's stories with CH and wanted to share mine. I've been dealing with CH for nearly 17 years and I am going through the most complex cluster of my life. Nearly all of my CH episodes last 3-5 weeks and affect the left side of my head. I typically treat them with Verapamil and Imitrex shots or pills for mild ones. I mentioned this episode was the worst and most complex. I started getting my "normal" CH around Easter this year but didn't start the Verapamil. I didn't have any of the SR pills on hand and couldn't be seen to renew with C19 shutting down most clinics. Sometime around the second week of May I stopped getting my headaches but was dealing with shadows. After two weeks of no CH I assumed I was in remission. However, starting about 10 days ago I seem to have retriggered a CH episode but this time it's 100% affecting the right side of my head. I know CH can switch sides but this is the first time it's happened since 2006 and I find it odd that it happened so closely to my last episode. My neurologist suggested starting my typical treatment but also introduce 250mg/day magnesium and 50mg/day B-2. Anyway, I've been reading a lot about high-flow oxygen therapy and requested it. My neurologist said his clinic doesn't work with home medical suppliers and that I need to get this initiated from my primary care physician. Has anyone else had to do this to get on O2? My neurologist initially suggested that I was a low-risk patient if I were to use more than the 5 shots/week but has now rescinded that statement and told me to stop Imitrex. I've reached out to my primary care doc but curious what else can I do? Thanks.