Scuba diving and cluster headaches

[Fcharp]

I suffer from cluster headache episodes. They happen every 10 years or so and last up to 9 months with frequent attacks. Home-based oxygen therapy works for me (fortunately) to abort attacks. But what worked for me even better is scuba diving at relatively deep depths. I discovered this by accident a few years ago as I was preparing for a 120 feet dive on regular air. I had geared up and was preparing to dive in when an acute attack started. I was in month 3 of the episode and my morale had been eroded by the frequency and violence of the attacks (at that time, my physician had refused to supply me with home-based oxygen treatment - she was afraid I would start a fire!). We had been planning the dive for days and I thought to myself: "Screw that... I'm going in.". While the first few minutes were made quite difficult by the pain, I started feeling better at 80 feet and the attack vanished when we reached 120 feet.

At first, I though this was a coincidence. But as we repeated the 120+ feet dives over the next 4 days, something unexpected happened: the episode was aborted and I was pain free for years afterwards. After talking to my neurologist about this event, he confirmed that there were more reports of busting an episode with diving at these depths. He also explained that he prescribed hyperbaric chamber treatment at simulated depths of 60 feet for cluster headache sufferers. He also explained that at the depths we went to, the oxygen concentration is almost 5 times higher than at surface level (approx. pO2 1.0 ATA at 125 feet vs 0.21 ATA at surface). This was the equivalent of a mammoth O2 treatment.

I don't suggest here that anybody go out there and try this. Diving at these depths require special training and certification. But if you are a diver who is qualified and who suffers from cluster headaches, consider it. But make sure that you are comfortable at those depths (i.e. not anxious) and that your buddies are aware of your condition and what you are attempting to do. 

Frederic

[Bejeeber]

WOW. The potential of hyperbaric treatment has been on my radar for a long time, but your report about the deep depths scuba therapy is the coolest - that has to be the about the best surprise you have ever had!

Will be interested to see if our long time CH'er (and also scuba diver I believe) @ThatHurtsMyHead has a take on this.

[ThatHurtsMyHead]

@Fcharp

When in cycle diving is a definite no for me.  I've tried it twice and never again.  The descent is fine on air or EAN36.  As soon as I break the surface I get hit with a k10 and scrambling to get back on the boat and the onboard 100% O2 ASAP.  

Do you do a deco stop with a high O2 for Nitrogen washout?  or 21% all the way down and back up?  

J

[Tony Only]

Recently I had a conversation with a fellow clusterhead who is not always considered a "pure" clusterhead by professionals since his CH began after whiplash neck injury. Oxygen works magnificiently well with him. He said he has used diving as a preventative (with gear not very deep I assume) and currently has a swimming pool at work and is using diving in that every morning. He's bit of an odd bird, also uses snuff (tobacco you put under your lip) to prevent his CH.

[Bejeeber]

Wow, so for someone like him, it's: "Got cluster's? Go lay down in the deep end of your pool!" Or maybe it isn't "lay down" at the bottom so much, since last I checked as a kid you have to empty your lungs to pull that off, and that wouldn't be so O2 enriching? Maybe he uses some weights in order to stay deep with full lungs?

[Tony Only]

I don't know the details. He said he is super sensitive to barometric pressure, I kind of thought it might be something like that in his case.

I think his own tricks are at least partially because he has not had any contact with other clusterheads up until just very recently. He has had no idea what should or should not be tried.

[Shaun brearley]

Wow this weird i managed to obtain my PADI certifcate in Mauritius in 2017 whilst on holiday can only dive up to 30 metres at the moment , but thought that id never be sble to really stretch it any further due to CH interesting 

[Randy the Heat Guy]

Interesting! Ironic that I was medically removed from the Navy's 2nd class(salvage) dive school due to cluster episodes. Might have been exactly what I needed the whole time! Been 15 years since my last episode but if they ever hit again I am headed to the local hyperbaric therapy center for a little experiment.

[Francesca]

I am a dive instructor who started getting chronic cluster headaches that only responded to very high doses of steroids and of course you can’t stay on them long-term but over a decade ago I concluded that if 100% oxygen at sea level was effective in aborting an attack certainly should be helpful under pressure And then there’s other physiological reasons that are likely and I’m just guessing at that I don’t even want to elaborate on at the moment but I will say that I had to sell my house and become a professional diver in order to prevent attacks however I have to dive every 72 hours. I am not going to get into the details of my dive profiles because they’re totally irresponsible and not some thing I would recommend to anyone especially as an instructor but I do a lot of deep solo dives which buys me more pain free time and I feel like I am able to sleep otherwise I can go up to five days without sleeping And I don’t think that there’s any reason to go to the depths I go to I mean they’re approaching oxygen toxicity and I’m diving on air and most people wouldn’t be able to go that deep on air because they would run out doing deco stops or get so narced they can’t function. I am a very small female with great lungs and my air lasts forever but still I do this solo obviously because I would never risk taking someone with me. I am lazy and dictating and hopefully anonymous but I will say that I have never never had an attack underwater or within 24 hrs of a deep dive. Other headaches yes including sinus barotrauma or reverse blocks above the eyes that feels strikingly similar at surface to a cluster but resolves within minutes. I have destroyed my back and all of my disks are permanently herniated so I have to gear up in the water and I am prone to tension headaches but I’ll take a tension headache every fucking day over a cluster not that a tension headache is pleasant but for me the most likely cause of a headache from diving would be Probably from CO2 when I’m fighting a current and I think a lot of people get those and they think  that’s bad I shouldn’t be diving but what you should be doing is diving without exertion to a depth that is at least 60 feet without stress and for a non diver I would not necessarily even suggest taking up diving unless you get one on one instruction I will occasionally take a max of two students if they beg to be taught together but training standards are just awful (says the lunatic solo diver who will certainly not return from a dive eventually but I am fine with that) I need to go deeper to get the longer-term affects and I hesitate to even say that and certainly am not recommending solo dives but in my case it’s a different situation.  I know a lot of people who can Completely rid themselves of an attack it as little as 60 feet I prefer to go well beyond recreational limits because I guess I’m partly suicidal at this point and I just love it I feel like a human being for days afterwards. I’m tired but I love being tired because otherwise I won’t sleep for days. For years I have been interested in writing a much more rational approach to treating cluster headache‘s for divers and trying to get into some of the physiological responses that most of us experience in ideal environments (talking temperatures current etc.) that I am certain are benefiting us but I believe it’s much more than just the increased metabolization of oxygen and think it’s the shunting of blood from the extremities to the core, vasoconstriction but also by lowering of the body temperature in general and I am truly believe there’s one other element but I’m trying to get a neurologist who is a scuba diver to go on the record and discuss this with me and they’re reluctant. I am as well because I don’t want a bunch of people going out and getting certified especially by these shops that take eight students per instructor and you’re not trained at all you are not a diver at the end of those you might get a certification but you shouldn’t because no one‘s been even watching you and you certainly don’t have time to master any skills and it’s really important to have good trim and neutral buoyancy and good control he a very confident diver before you can even start thinking about treating your cluster headache and you might end up causing all kinds of problems that will result in other types of headaches or sinus barotrauma‘s that mimic very bad pain that could be confused with a cluster headache as I said there’s been a few people who’ve spoken about experiencing one as soon as they surfaced and I am skeptical of that and I suspect there might be something else going on there’s a lot of reasons diving can give you a headache all of them should be avoidable but in my case I definitely get some tension headaches I should be diving with a much smaller cylinder because I weigh 90 pounds I almost feel like there should be a recipe for every individual cluster headaches suffer you can’t just say y’all go diving although I would like to I’m very tempted to I feel like it’s reckless if you’re already a diver and been diving for a long time And you are fearing getting a cluster headache at depth I can say on the lives of my dead family members this will not happen. It Is the only situation in my life in the last 20 years where I haven’t had an attack the only one and I am chronic didn’t start chronic I started as episodic and I did respond initially to some medications but I had a standing order at my local emergency room for IV steroids followed by 60 mg of prednisone for five days and then 50 mg for four days and basically a really long taper so I start and end in about a month and they would allow me to do that every other month which is rare most doctors won’t let you do that often at all and I’ve been doing it most of my life And it also makes me nervous to sound like I am suggesting to people that they exceed recreational limits. I am  straddling a threshold that will eventually lead to me not coming back from a dive but at this point in my life it is the only thing I live for it’s what makes me functional happy and most people have no idea. I don’t tell people I have no reason to tell people and I am not someone who wants sympathy definitely don’t want pity however I do want the ability to do whatever the hell I want and unfortunately at this stage of my life what I want to do is not some thing I would ever recommend anyone else does and there’s no reason to for probably 99.9% of cluster stuffers you just don’t need to do anything close to what I do you can dial it way back and, be safe, smart and conservative and have good success but if you’re just vacation diving this is not going to help you beyond the reassurance that diving is safe and you can enjoy it, unfortunately flying to your dive trip is not fun and I recommend a very short prednisone taper to get you there. As far as hyperbaric treatment I think it’s very promising (but prohibitively expensive and inconvenient) and it is lacking a few elements that you can’t get without being submerged in water and I think those also might have a role in why it’s so successful..

Edited November 22, 2022 by Francesca
Dictated message that was sloppy and long winded

[Bejeeber]

On 11/22/2022 at 10:05 AM, Francesca said:

I’ll take a tension headache every fucking day over a cluster

I say Amen to the above snappy quotable. 

This is a bit off topic, and potentially a thread jacking type of comment, so feel free to ignore, but folks such as yourself who can get a break from CH with high dose prednisone can typically also knock out their CH for very long periods of time via busting, as described at the blue "New Users - Please Read Here First" banner at the top of the page here, if you haven't considered such yet.