My short bio: Chronic Cluster Headaches - its like 4 or 5 migraines a day - Every Day: My Neurologist tells me it is the most pain that a person can go through. The NHS in the UK gets a lot of stick in the press across the world, BUT I've seen the good side of the NHS in action so ask me anything about my experiences with the NHS, or with this condition in general. Wiki link to the condition if you want to know more:

PS: I wish they were medically called anything other than headaches - painkillers of any strength just don’t touch it!

EDIT: There is no pain like it. A lady who attends the same clinic would rather go through childbirth again than a single cluster attack. Also, medication is free in the UK, so oxygen, Imigram injections and the nerve block are all free of charge. Anyone out there who pays for healthcare please let me know what you think this would cost as an comparison, as I really have no idea but would like to know.

EDIT TWO: I am overwhelmed by the support out there -and shocked at the cost of healthcare out-with the UK. Makes you glad for the NHS, despite its faults. THANK YOU everyone!

**TLDR: My wife, work mates and the NHS are all amazing at getting me though this. **

My Proof: Sent to Admins for verification (since it is medical info)

Comments: 264 • Responses: 85  • Date: 

brutarianart65 karma

I have broken down in tears twice while reading this AMA and I expect it to happen at least once more while writing my comment. I am 52 now. My first Cluster headache was in the late seventies while I was a teenager. I suffered through them with no idea what was happening until I was diagnosed at the Diamond Headache Clinic in Chicago. At that time, they could do nothing more than offer their sympathy for my pain and recommend some drugs that "probably wouldn't help much". Lucky for me, the headaches were seasonal at that time and I could go months without an on-set. As I got older, they became worse and stayed year round. I found a sympathetic Neurologist in my late twenties. She had never successfully treated Cluster headaches and would experiment on me with different drug combinations. I could write a couple of pages on those experiences, but I will spare you for now. One of those experiments was Imitrex. It was so new that it was not available in pill form and I had to inject myself. Combined with oxygen, the Imitrex seemed to work if it was taken before the pain was too severe. I had also developed my own heat therapy that seemed to help most of the time. When I was divorced with no insurance and a single father of a little girl, the heat was the only thing that helped me survive. Your description of the pain is what caused me the break down the most. I have never heard anyone describe it so well. In all these years I never thought anyone understood what it was like. There were times I was certain my only relief would be to open a vein to remove the blood that was torturing the blood vessels in my brain. My daughter became my nursemaid at age six. When I could afford the medicine, she would make sure I didn't hurt myself with the needle. When I couldn't afford it, she would heat wet towels in the microwave. She would sit by my side and put her little hand in mine and wait until the pain was gone. I decided to change my lifestyle in my mid thirties. Exercise and a vegetarian diet became my main focus. When I turned forty the headaches started to diminish and were at a very manageable level, and by forty-five they were gone. Maybe I grew out of them and maybe the lifestyle change helped, I'm not certain. Those headaches changed my life. Sitting through that pain gave me perspective. Small problems have no place in my life. I lived through unimaginable pain and now it's over. My daughter is grown/successful and we have an unbreakable bond. I run 5 half marathons each year, remain vegetarian and thrive in my career. I encourage all of you to keep fighting. This is the life your were given. Live and make yourself happy.

ManInBlack105387 karma

Thank you so much for posting. It takes a lot of courage to post, and i know how hard it is to admit to how painful and brutal a condition it is. Saltwater is melting in my eyes as I reply, I can only guess someone is chopping onions nearby or something. It helps (more than I can express) to hear someone else describe the same experiences - but I was in tears to read "when I could afford the medicine" - being a Brit, I guess that never really occurs to me.

So glad to learn your daughter and you have an unbreakable bond. I worry that my girls see their dad in this horrible vunerable state, and you worry about the damage that it causes them. To learn that it has only bonded you closer - well that gives me so much hope for the future.

Good luck my friend, and I agree - live, and make yourself happy. Best wishes.

rnyboe29 karma

Sorry to hear you have this condition. My dad suffered really bad cluster headaches, he was taking zolmitriptan (Zomig), which helped him a lot! Are you aware that there is currently research into performing a neurosurgical procedure to cure cluster headaches? Finally, I can say that for most people symptoms gradually become milder with age. My dad has been headache-free for 8 years..

All the best..

ManInBlack1053825 karma

Thanks for the kind words - have an upvote. Zomig is amazing, but can only use two per 24 hour period :-( O2 is also fantastic. Sorry your dad also suffered, it is not fun. From a dad point of view, how did it affect you seeing your dad like that? - I always worry when my kids see their superman in vulnerable mode.

I am getting nerve injections that help, but I will need to look more into the surgery option - thanks for taking the time to let me know.

rnyboe11 karma

I guess mostly I felt deeply sorry for him. I have no doubt that this is unimageinably painful - he was banging his head into walls (literally) and walked restlessly around the house. From my point of view it was frustrating not being able to help him (I am a doctor myself, in a different field).

ManInBlack1053817 karma

Wow I always worry, dont want my girls seeing me like that, but sometimes it is unavoidable. I know what you mean about banging your head -there have been a few times where I have ran at the wall full speed with my head down hoping to knock myself out - just to get some relief from the pain.

Bottom line is without the support of my wife, and the UK Health Service, I couldnt get through this and led a normal life.

Saranodamnedh2 karma

Oh man, Zomig makes me feel like I have the flu the day after... have you tried Maxalt?

I get chronic migraines, but I can't imagine it being anything like your gig. I get scatterbrained and can't read easily, etc.

ManInBlack105382 karma

Hi, I started on Maximelt, but after a while my body adapted to them and went I went onto Imigram. Shame, as Maximely was more discrete to take. Yeah, the scatterbrained is part of the whole deal - I can literally take 10 minutes to make a cup of tea after an attack, as its a case of 1.) Boil kettle. 2.) nope, fill kettle first. 3.) Boil Kettle. 4.) Watch Kettle Boil. 5. Put teabag into cup . . . etc. No steps are automatic anymore, everything has to be thought out in a logical sequence. So sorry you get chronic migraines, they are a bummer, right. . . .

tehbored20 karma

Have you ever tried taking psilocybin mushrooms? They allegedly treat cluster headaches for as long as 6 months at a time. I've heard LSD can work too.

ManInBlack1053829 karma

Ive heard they work, but not tried them yet. I rule out nothing. I would inject heroin directly into my eyeball during an attack if you said that it would help!

I will look into this though - thank you for taking the time to let me know.

tehbored12 karma

Given that you live in the UK, they shouldn't be hard to get since you can just take a day trip to Amsterdam.

ManInBlack1053817 karma

It is not that far - to try for a quick overnight. Its totally worth a shot. Thanks for the tip.

roionsteroids2 karma

You previously said that Zomig helps you a lot, which is a tryptamine as well iirc. Give it a try!

Not sure about the legal status of substituted tryptamines in the UK (or if you care about that, hehe), but you might also want to check out the 4-HO and 4-AcO series. A nice report on Erowid can be found here.

ManInBlack105385 karma

Not that I care about the legality debate - I feel I need to be pain free, and that should be a right above any debate on the use of mushrooms for recreational use. Thanks for the link to the report - I'll add that to my ever growing pile of homework that I'll be researching. I do appreciate the fact that you took the time to come here, to post and to look out the report and link it. Thank you. Cheers

donsasan8 karma

LSD with sudden and strong pain attacks could lead to severe horror trips and/or suicide attempts.

tehbored5 karma

Yes, which is why OP should have a sitter present so that they can get medical attention if things go south. Thanks for pointing that out. I left OP another comment.

donsasan2 karma

Yeah, I didn't say that it couldn't work. I meant that OP should be extremely cautious and well prepared. LSD isn't a cure-all and can do just as bad things as it does good.

tehbored2 karma

I think mushrooms are probably an easier choice simply because OP lives in the UK and can get truffles legally in Amsterdam, but the same sentiment applies. Nevertheless, there is a lot of evidence that psilocybin is an effective treatment for cluster headaches/

ManInBlack105382 karma

On the LSD thread above, it is something that i will be looking into - the side effects cant be worse than being spaced out on the cluster! My wife is always with me on a bad attach anyway (for instance if you fall asleep on the oxygen - well, its a non-return breather mask so if the O2 ran out, you would suffocate) so good advice to have a sitter with you. Thank you to everyone above for helping out. As to the LSD leading to suicide attempts and horror trips, no worse than the clusters themselves I guess!

WaterMe1on11 karma

Do you ever contemplate suicide?

ManInBlack1053833 karma

To be brutally honest - yes, at the worst moments, it is an option. Anything to kill the pain. Now that I am on O2 therapy and we are stabilizing the daily attacks, that has helped. Sometimes, when you are in a three day attack with no relief, it does seem like the only route, but most of the time it actually makes you appreciate the good moments more.

WaterMe1on8 karma

That's understandable man. What does your family think about that? Also, when did the headaches start? Do you know what causes them?

ManInBlack1053828 karma

I have some basic triggers (dehydration, tiredness etc) but not the usual migraine triggers like food, coffee, paint, perfume etc. My family are ace - my wife is a white witch in that she can see it in me before I can, so if I listen to her, and hit the O2 quickly, then I can get on with my life. The kids are 11 and just accept it as part of like. Kids are so resilient. They started about 15 years ago (see post below)

TL DR: Wife is amazing!

2SP00KY4ME10 karma

Sorry, did you say 3 day attacks? Like non-stop? How do you eat / sleep / work?

ManInBlack105385 karma

Yeah, you do get through it. The main attacks come at night. Times like clockwork. Sleep just works around the two main ones. You have a set bedtime routine (yeah, I have a bedtime again!) as your body loves routine and punishes you if you dont obey, but sleep is the easy part as the attach takes all of your energy. Work is more difficult at times, but because of what i do (AV installs, with a big degree of programming) I can be flexible if not on a clients site and program to hours that suit my body, and just adapt. You do get there, just a question of adapting to a new situation. Having a family and workmates that are understanding is the best thing in the world though. They know that when the beast kicks in, it takes priority over everything - Everything - I mean Christmas, New Years, Birthday, misses then all because of this damn thing, it just takes over when it wants to. But hey, its not terminal, I'm alive, and people have it worse. Take care. Cheers

potttaaattoooo9 karma

How do you manage in everyday life?

ManInBlack1053814 karma

You learn to adapt - and so do your family. The main clusters are timed: 01:15 and 05:00 are my worst ones - using oxygen and at least one dose of Imigran Injection. The challenge is that you can only use two Imigram per day - so whilst it does abort the attack, it has limited use in any 24 hour period. The pure O2 therapy works very well, and my wife and kids notice the warning signs now before me, so I can now bang on the O2 for half an hour as it come on. Its not the most fun I can imagine, but you learn to cope. I work my own business, so I can program from home when my body allows me to work, and they guys at work are amazing as well. Thanks for the question.

clipmann2 karma

By lugging around a big oxygen tank!!.

ManInBlack105382 karma

Yeah! The canisters hold 2400 litres each and weigh about 17kg. Its worth it though, because they work! Also, bonus, as nothing stops a traffic warden putting a ticket on your car faster than the vision of you sitting with an oxygen mask on. it scares the living ---- out of them!

TheDutchDevil8 karma

When did you first start getting the attacks?

ManInBlack1053817 karma

About 15 years ago - started off as migraines then (one every three months), but changed forms about 6 years ago and became increasingly regular. The Dr admitted that this was not migraine behaviour, did the usual CAT scans etc, and eventually sent to a Neurologist. Good boy NHS, the Neurologist instantly know what was. The O2 therapy and Imigran cant be cheap, but welcome to the UK -the NHS do not let that cross their mind - once they have you diagnosed, they do everything they can to help.

TheDutchDevil6 karma

Thanks for the response! What's the most unconventional or weirdest thing you tried to stop the pain / the attacks? And did you immediately get the O2 therapy and Imigran or did you and the neurologist try something else first?

ManInBlack1053813 karma

Weirdest thing was trying to knock myself out - ran head first at walls, blood let, hit my kneecap with a brick to distract the pain - none of it worked!

Used the Imigram for migraines for a while and it also aborts the clusters as they are medically related - but can only use two qty in any 24 hour period. The O2 can only be prescribed after the Neurologist visit - my headache nurse sorted that out straight away and what a difference it has made. Ive only been on it under a year, and I wish I had it sooner. I can not praise my headache nurse enough. Because of what she does, I have been honest about the pain levels (you don't tend to be because people assume you are exaggerating) and she is a shining example of the NHS at its best.

Apex-Nebula5 karma

Just wanna say it's kinda inspirational to know that it's possible to get through the worst pain on earth. I'll think of responses like that when I get hurt in future.

ManInBlack105387 karma

The only pain worse is standing on Lego bricks in bare feet!!

TheDutchDevil1 karma

Again, thanks for the response! :D So just pinching in your leg while you have a cluster, or any other method of inflicting pain to distract from the pain don't work at all?

Are there any support groups you frequent or do you know more people with cluster headaches? Do you have more members in your family that suffer cluster headaches?

How long do the attacks usually last for you?

Unbelievable that you live through this on a daily basis and as Apex said it's inspirational to know that you manage it.

ManInBlack105383 karma

Hi. no, nothing else worked. Hitting my kneecap with a brick didnt register. Even hitting my head off the wall at full speed - didnt feel the pain of the impact!

I dont really frequent any support groups, but I do chat in the waiting room to others who are getting the nerve injection ever three months or so.

I have a history of migraine on my mothers side, but no history of clusters.

Attacks: It can be as short as 1.5 hours if it wants to responds to the oxygen and Zomig - AND if I spot it in time, rising to three hours if it feels like being stubborn or if I didn't treat it in-time (with headaches for the rest of the day but at least the major attack is over)

Worst case, this can be up to three days if untreated or just because its my turn to get a long one and my body decides f**k you, thats why.

reel_big_work2 karma

Imigran costs £7.99 for a 2-tablet pack.. not so bad, but if you're using a pack a day, that's more expensive than smoking! (~£3k per year!)

ManInBlack105385 karma

Damn, I should just take up smoking then - cheaper than this cluster nonsense!! :-)

Gravy-Leg__7 karma

Can you describe what the pain feels like?

ManInBlack1053818 karma

Firstly, it is one-sided. > 95% of the time for me it is left hand side. Imagine a clamp around your head tightening, but at the same time there is a sharp hot object behind your left eye trying to drill an exit hole through your eye. The clamp continues to tighten - and everytime that you bargain with the universe that "OK, thats my limit, stop now pleas" it tightens a little more. You vomit, loss of balance, and sometimes get quite scared for no real reason. You know what is going on (most of the time) but you have a deep feeling of fear. I also taste stone at the top of my head (how weird).

I've been run over at an estimated 40 MPH, I've broken legs, arms, dislocated knees and nothing comes close to this. It does take you to a new level of pain - and the human body can take more than you can imagine.

Hope that helps describe it

bk98966 karma

I always thought of my pains as an insect with a rotating jaw trying to burrow its way out through my eye. I appreciate you doing this AMA because it seems like I'm the only one suffering with clusters. I think one of the hardest parts is that no one else really understands the pain and so just writes us (me?) off as exaggerating or as having a low pain tolerance. "Everyone gets headaches, right?"

I have also had the Bilateral Occipital Nerve Block a few times as well as steroid shots. Maxalt worked for me for a while, but the side effects of some of the more intense meds made the pain worse, not better. Have you ever tried Depo-Con? I have no idea what's in it, but the neurologist did IV injections when I had the ones that lasted multiple days.

Good luck, and I will be looking into oxygen therapy ASAP. Again, thank you for doing the AMA :)

SaintOmerville3 karma

I have been headache free for about 7 years; hang in there guys. You are spot on about other people not being able to understand the level and type of pain.

bk98961 karma

Thanks for that. It's always good to know there is hope.

ManInBlack105383 karma

Looking over the hope that all of the people are talking about receiving on this thread, we should rename this "A New Hope" I feel I've hear that somewhere before, but it does have a ring to it . . . .

ManInBlack105384 karma

Come on, A New Hope, not one taker? Thats comedy gold people . . .

Konfektyr2 karma

I'm scared..

ManInBlack105381 karma

Dont be - you will get through. Tell me what you are going through. Seek medical help. Arm yourself with the information you need, as this is one of the most under-diagnosed conditions out there. Reply and I will give you whatever info i can. Dont be scared, we all get through it, we really do

Mundus_Vult_Decipi1 karma

Excellent description! Same with me, only I've never vomited (that I can remember) because of it, and I've never tasted stone at the top of my head, but sometimes my skin/hair hurts.

ManInBlack105381 karma

Yeah, it sucks, but what can you do? The tasting the stone thing is weird -totally illogical I know - but a sure warning sign of a biggie on its way.

Zarqu0n6 karma

I'm really sorry to hear this. Do you even manage to do everyday stuff, like cooking for example, when you have a headache?

ManInBlack1053819 karma

No, fraid not. Its complete zombie state. Lying in bed, crying, waiting for the pain to pass, cant cook, hard time walking, dont really feel like eating or drinking. This can lead to problems in the longer ones because you have to keep hydrated, but IF you just dont drink any fluids when you are in one - then this just extends your cluster period! (EDITED for clarity, my typo, sorry!)

thanks for the kind words - its just one of these things. Its not terminal, and I need to keep in mind that there are people out there who receive worse news than this on a daily basis.

Zarqu0n2 karma

Thanks for your answer!

ManInBlack105386 karma

Anytime - I figure its a rare condition - so people may have questions. Ask away Reddit....

khrjsb5 karma

No question really but maybe I can help clear up a few of your concerns with the familys side. My wife has a cavernous angioma in her brainstem and it leaks blood into her brain shocking it so that it swells up. She then gets a migraine until the swelling goes down. Her migraines can last anywhere from 5-6 hours to a couple days. On average she spends 2 days a week with a migraine all day long and 3-4 days a week with a 3-6 hour migraine.

I can tell you that I see her as the most heroic woman I've ever known. I have no clue how she manages to put up with them and still be the mother that she is. Know that your wife feels the same way about you, you're both amazing. She feels like she makes me do way more than I than should be doing to support the family but the truth is I generally don't mind. I actually feel like I could be doing more to help lighten the load. I know it helps her to (try to)relax and shes that much happier and sweeter on her good days. I want her to be able to focus on having fun with the kids and making the most of it.

The boys(10 and 7) know when she has her bad days as well, she's always in the bedroom with the lights off all covered up, and she turns the AC way up so its colder in the house. They like to help her take care of mom in the ways they can. The older one understands she can't get up and help out because she has a medical problem, but I don't think either of them quite 'get it' yet. Neither holds any resentment towards her whatsoever, nor feels sorry, or anything that she confides worrying about to me. She still won't believe it but its true. They love their momma no matter what because she's there for them so much on her good days. As long as you love them and make your memories they'll never stop seeing you as invincible. As far as I can tell its actually just another feather in your holy crap my mom/dad is awesome cap as far as they're concerned.

In the end I'd just say I hope you understand we never see you as a drain, or nuisance, or anything you may wonder about. We love you and can't wait for the good days to see your smile and hearing you laugh again.

ManInBlack105382 karma

The second post that has water coming out of my eyes. it must be faulty contact lenses or something.

Thank you. Honesty, so much. you can't help but worry what it is doing to the kids when they see you like that - no kid should ever see Dad or Mum in pain. I'm meant to be fun-Dad, but at times, it's just not possible. They are amazing though, and adapt better than I ever imagined. We need our spouses support, and we dont take for granted how amazing you all are.

TL DR: Kids are great and adaptable, spouses are amazing

Lotsofshi5 karma

When you are experiencing a cluster headache, do you exhibit signs/symptoms of synesthesia? I used to suffer debilitating migraines in my teens and recall times when my senses were jumbled.

ManInBlack1053810 karma

Hi, I dont get Synesthesia - I get more confused. Words get stuck or lost, and I cant explain basic concepts. On a bad (but not extreme) one, I lose cognitive functions to a level of - well, I design and program AV touchscreen systems, but if you were to hand me a system schematic, I would have no idea what on earth it meant. I dont seem to get the cool side effects though!! Do you still get the migraines or did they fade away over time?

Lotsofshi3 karma

Diminished cognitive function? That's nasty, and certainly not a "cool" side-effect! My migraines faded away after several years, fortunately. Meditation and biofeedback helped. Have you ever undergone biofeedback therapy?

ManInBlack105384 karma

I've not heard of biofeedback, but you can guess what I am looking into next . . . . if you found it worked, then it is worth a shot

EDIT: Yeah, I could cope better if I got cool side effects, like seeing sounds and the like. That stuff would almost make up for it!!

KustyTheKlown2 karma

i get the same "confusion" for about an huor at the outset of my headaches

not being able to turn thoughts into words is terrifying, and scared the shit out of my parents the first time it happened

ManInBlack105381 karma

Yeah, it's proper scary. I imagine it's worse for someone watching you lose it.

rushboyoz1 karma

As a 42yo long time migraine suffererer, I've only just this year started getting the confusion states occuring about 30 minutes before a migraine attack. I get one migraine a week, but only the confusion a couple of times. Freaked the hell out of me. Glad to see that it happens to others too. I'm not quite the isolated case!

ManInBlack105381 karma

Yeah, once you know that it is part of the whole spectrum, and that it all comes back after the attack, it is less scary - but the first time it happens, well thats some scary stuff right there.

Mundus_Vult_Decipi1 karma

Yep, my wife looked up the symptoms (when it happened to me the first time) and figured I was having a mild seizure. Nope, just a big ass "headache".

ManInBlack105381 karma

Totally - feels like a seizure - so worrying. Glad to hear it wasn't, just sorry that you are going through it. We do get through it though, good luck

twostepsonthewater4 karma

good for you. I get imigran on the NHS for chronic migraines too, as nothing else works. They're debilitating, but not as serious as yours. I was in A&E with one a few weeks ago, but mostly they're manageable. Don't know what I'd do without the NHS

don't have a question really. just wanted to say all the best to you

ManInBlack105383 karma

Wow Thank you. Ask your GP for oxygen. It works so well for clusters. I don't know how well it works for migraines, but its 100% natural, so worth a shot. Sorry you are going through that pain, but isnt Imigram amazing!

Reddit outside the UK: Any idea how much Imigram costs?

ClusterHead19802 karma

I'm a female, 33 years old, and I've been diagnosed with cluster headaches that are timed to my menstrual cycle. They started about two years ago and occur 6 days out of every month between 8pm-10pm for anywhere between 20mins-2 hours. I have migraines as well, but they are very well controlled and no longer bother me or effect my quality of life like they did when they first started. Untreated I have 2-4 migraines per week, but I am currently on a medication called Propanolol, which is a blood pressure medication, on this treatment I only have a migraine once every two weeks or so, and I can abort those almost completely with Imitrex tablets.

I have had 2 children and it is true, I would much rather go through childbirth again than have to deal with clusters. Mine are right sided and centered right behind my eyeball, and it is the most intense, sharp, focused pain I have ever felt - it literally induces me into a state of panic, even though I know what is happening. My eyelid on that side droops down and my eye and nose water horribly. I've dealt with them for two years and it still terrifies me EVERY single time it happens. My spouse is extremely supportive as well, which makes a world of difference. I thought I was going to die the first time I experienced a cluster and was in the hospital every night for a week thinking I was never going to make it out of there alive, he is the only thing that kept me calm and grounded.

At first my GP did not know what the headaches were, so I went to a neurologist that specialized in headaches and he knew exactly what it was right away. He prescribed Imitrex injections and oxygen to treat the clusters and that combination seems to work the best as an abortive. I pay around $120USD/month for the injections and I refill my oxygen tank every month for about $45. That is all after my insurance pays its portion.

For preventatives I have tried Verapamil and Prednisone, but stopped those due to some nasty side effects.

The best treatment I have found is Vitamin D and Melatonin. I take 5,000iu Vitamin D3/day (10,000iu/day the week before my cycle) with 500mg of Calcium, and then 9mg (three 3mg sublingual tablets) Melatonin before bed every night. I was deficient in Vitamin D and have regular bloodwork done to check my serum levels, but this seems to work the best out of everything I have tried in terms of lowering the intensity of the cycle.

Best of luck to you in dealing with these monsters!

ClusterHead19804 karma

My husband drew a picture of cluster pain a while back...I think it's kind of cool! Pain

ManInBlack105381 karma

THIS is why a picture paints 1000 words! That is perfect. Can i get your husbands permission to save this?

ClusterHead19801 karma

Of course you can save it :)

ManInBlack105381 karma

Thank you, and thank your husband. It describes things in a way I never could.

ManInBlack105381 karma

Wow. I think we in the UK forget the cost of treatments. Unfortunately the Vit D and Melatonin didnt work (the Melatonin did for a while, but as with most things, my body just side swiped it and continued as normal!). I have started on Topirmate now (only four weeks in) so hoping that will work. Imigran is amazing, and I can go through two to four oxygen per month! (Mine are not timed with my menstrual cycle though!! That would really confuse the doctors!)

Spouses: Without our spouses, we could not begin to cope with the beast - yeah spouses!!!

Thank you, and good luck to you.

TL DR: Spouses are the backbone to surviving. We thank them all

hdresearcherguy1 karma

Oxygen doesn't work for migraine, just cluster and some closely related headaches.

ManInBlack105381 karma

Oh, sorry, I didnt know that. Hope that you all get something that does relieve the migraine pain though - they are brutal

hdresearcherguy1 karma

Careful, if you take imigran more than ten times a month it will make migraine worse. Have you seen a headache specialist or just a general neurologist?

ManInBlack105381 karma

Thankfully he is a headache specialist. I am on anywhere between 45 - 60 Imigran in any 30 day period (obscene amount, I know) so that is a concern, but we are looking to stabilise the daily attacks through long term preventative pills and slowly see the qty of Imigran come down. I dont like the thought of the amount of chemicals I am pumping into my bloodstream, but at the moment I just need life. We will get there, its just a matter of time to find the right balance . . . Thank you for taking the time out to post, I deeply appreciate it.

squigsdad3 karma

Thanks for starting this. I am also a 39yo male that suffers from cluster headaches. I have only been dealing with them for two years though. Lack of sleep and dehydration also trigger mine, but I was found to be vitamin D deficient also. Taking Vitamin D and getting enough sunlight have both helped reduce the occurrences, but in no way have made them go away.

While the pain is excruciating, I have the hardest time with people's reaction to cluster "headaches". They do not understand the severity of the pain. They respond with statements like, "oh, I understand. I get migraines every once in a while." I stand there thinking, "migraines! I'll trade with you any day!"

ManInBlack105382 karma

I know, I think the term 'headache' does not help. Call it 'Chronic Cluster Neurological Disability' of something close, and people would be more understanding. its the ones who say "yeah, i get migraines, Ibuprofen shifts them' Sorry dude, thats not a migraine, thats a headache.

hdresearcherguy3 karma

Without giving too much away, do you see the headache team in WC1?

ManInBlack105382 karma

No, not sure where that is, but I'm up in Scotland. You can PM and Ill let you know which clinic I attend. I cant rate them high enough.... Good boy NHS

Edit: WC1. postcode reference. Why did I not see that!! Doh!

Gravy-Leg__3 karma

Have you ever tried morphine-based drugs to alleviate the pain?

ManInBlack105385 karma

A few of the medications are morphine based - and whilst they lift the smaller attacks, the problem with them is two fold: 1.) Time taken for the body to absorb. They just take too long to get into the system. By the time the pain killing element kicks in, the pain level is beyond medicating. The injection or the O2 is a lot more direct and quicker. 2.) Rebound headaches. Yeah, the human body is a scumbag. It can give you rebound headaches so that it can get more codine or zydol!!

The injections are amazing - BUT worth pointing out that they are not traditional pain killers. if you were in any sort of pain, I could give you this and it would have no effect at all. They work by changing the expansion/contraction of the blood vessels in the brain and perhaps also assist with Serotonin binding - but to be honest, the medical trade know they work but are not 100% sure why!

Atroxa3 karma

I suffer from horrible migraines that can last for an entire day and leave me completely bedridden; however, they only tend to come on once or twice a month. I can't imagine living with this sort of severe pain four or five times a day!

When I have migraines, I have found that hot/cold therapy has helped to make the pain bearable enough to not trigger certain responses (like vomiting). Once I had a seizure from a particularly bad headache only I didn't know it was a seizure at the time so I didn't go to the doctor.

Scary real questions just wanted to wish you luck.

ManInBlack105383 karma

Thank you so much for the kind works - people of Reddit, you are all so cool. Sorry you have to go through that, it sucks, doesnt it!

Atroxa2 karma

It most certainly does. And I can't take the imigran - I'm allergic to it. I basically have tried every single home remedy to deal with them - some work better than others. I know clusters are a bit different than migraines but any chronic neurological headache is the worst.

Mine have gotten better in time but there was a time when I was getting a migraine every other day and it was really affecting my life. You can't do much of anything except sleep when it happens.

ManInBlack105381 karma

Oh - I cant imagine being without Imigram or Zomig - God, how do you get through? Is it just Imigram that you are allergic to, or all triptians like Zomig?

eMP3Danie3 karma

Do you still work or do manage through out the day with the Oxygen.

I have been battling my headaches for nearly four years and they started out with just being simple migraines I would/could sleep off.

Now its just simply a case of hold tight when the attacks come on.

I have been seen by lots of doctors/neurologists and I still have no answers. How did you get on with the government and the benefits system?

I always get knocked back for full on ESA with a 0 point score. Even though the doctors sign me off with this sickness.

ManInBlack105382 karma

I can work some of the tme but I do miss some work days. The oxygen does help abort an attack and combine that it's the Imigram or zomig then I can normally get through until I get home and collapse.

No luck with the benefits system although enqueries are ongoing. The issue is that it's not. Well known condition, and it's not 100% of the time (even if you get one every day) so technically the see that you acn function some of the time. PM me sometime and I'll go into more

eMP3Danie2 karma

My line of work requires me driving petty much to and from each job... sometimes long distances with a lot of bending stretching all other stuff. Its tough when you're driving and you get an attack.

The doctors sign me off all the time... but the government want me to work as I dont fit the criteria for an ill person.

I had 2 weeks in The Walton Center in Liverpool not so long ago and they put me on some serious pills for the next four years.

Is there like a contact center that deals with ill people specifically for headaches?

ManInBlack105381 karma

Eventually my doctor referred my to a headache neurologist - there may be a clinic nearby. But please ask for a referral - I went through years of needless pain, whereby the neurologist has me diagnosed within 45 minutes. You'll then get accrss to oxygen therapy (its a lifesaver, soooo good), nerve cluster injection etc.

you can also try The Organisation for the Understanding of Cluster Headache

Great forums and can help point you in the right direction.

Good luck, please let me know how you get on - just PM my account sometime.

SlicesOfLife3 karma

I read somewhere that LSD could help aborting attacks. Ever considered some illegal drugs?

ManInBlack105388 karma

I use cannabis for pain relief for some of the attacks - not just because I am an ent anyway, but it does actually help. The higher attacks - well, there is nothing I could take - I just don't function. I've not tried LSD, but there is research being done into it.

Also, I do get a new type of injection in my neck every three months called a Occipital Nerve Block - this helps numb the pain for a while

t0astter12 karma


Nicetwice6 karma

Came here to say this, I saw that documentary as well.

Stay strong buddy!

ManInBlack105382 karma

I'll be watching that later this weekend - thanks for the kind words of support.

KarmaSagan5 karma

I can't upvote this enough. There is a lot of cases of psilocybin mushrooms curing or greatly reducing the number of Cluster headaches of people that use it.

For the amount of pain you have to endure, I honestly wouldn't think twice about trying it out. You can take them in small doses and not even really "trip". Although I would probably suggest taking that trip at least once in your life if you haven't.

Best of luck!

ManInBlack105383 karma

Thank you everyone. It is certainly something I will be looking into. It's cool that you've all taken the time to respond to some random stranger - very cool

KarmaSagan3 karma

No problem. I don't want to come across as just some hippy telling you to take a bunch of drugs. I am actually just a regular guy that has had a lot of experience with drugs and have personally experienced the massive amount of GOOD that they can do for you when they are not abused but rather used as tools for growth or healing. That is why your situation is especially interesting to me.

MDMA, LSD, and Mushrooms have gotten a very bad rap from the reactionary war on drugs, but I have never encountered anything that has helped me through more spiritual and emotional turmoil than those 3 things. Again I have to stress that they should be used responsibly, too much of a good thing is still too much.

ManInBlack105381 karma

Not at all - no one yet has come across as some hippy - I have personally found that cannabis helps when i am in a fit state to take it - but only for the medium clusters. Nothing helps for the big ones. If they can get the research right on LSD and mushrooms, there is hope, but there is a big fight in the UK at the moment about how hard researchers are finding it to get a license to study something that grows naturally and can help alleviate pain!!

Mundus_Vult_Decipi2 karma

I came to ask about cannabis, so you've answered that. Have you tried any strains with a high CBD count as opposed to a high TCH count? I've been managing mine (oh great, I feel one just typing about it) with cannabis for a few years now and I usually hunt out the higher CBD count strains, which are more available now that a year ago (in San Fancisco area).

ManInBlack105381 karma

I wish I could answer, but I dont know if the strains I tried had higher CBD rather than TCH. To be honest, I have always enjoyed cannabis as my drug of choice above alcohol before the clusters - as when I was prone to migraines, alcohol is not your friend, whereas I could relax and chill with cannabis and not be punished the next morning.

I just dont understand why everyone freaks out if you say you dont enjoy getting drunk and suffering a hangover, but judges you for having a joint and staying pain free?

EDIT: Should I crosspost this to r/trees?

Akial3 karma

How long does an average headache last ?

ManInBlack105385 karma

It can be as short as 1.5 hours if it responds to treatment, rising to three hours if it's being stubborn (with headaches for the rest of the day but at least the major attack is over) to three days if untreated or if it is just being stubborn.

Akial1 karma

Thanks for answering. Hope you get better!

ManInBlack105381 karma

Cheers. I just re-read and realised that I accused the beast of being stubborn twice! I guess that means its being doubly stubborn that day!!

ThomasEria3 karma

The face that yours started of as migraines has me worried. At the beginning of the year my migraines turned from a few a year to chronic, like 4 a week. I am battling them the best I can without medication since I don't have health insurance and can't afford to go to the doctor. I certainly hope mine don't get worse too.

I'm glad you got treatment and help you needed. I can't imagine how much worse cluster headaches must be.

akpak2 karma

I've been in your situation. However, if your episodes are escalating, please go to the ER next time you have an attack.

(In the US) Hospitals are required by law to treat you whether you can pay or not. You need to get help, even if you have to pay off your hospital bill over a long time.

If you don't have insurance, you can usually negotiate down your charges.

Please, get help. Worry about the cost later.

ThomasEria2 karma

I've thought about it a lot, but have just not brought myself to do it. I probably should since my life has been shit, and it's brought my anxiety disorder back. Thanks for the suggestion.

ManInBlack105381 karma

Please, please, seek medical help. Easy for me to say, living in the UK and not having received ONE bill for ANY of my treatments, but your health comes first and you can't suffer. I've heard a lot of talk about ObamaCare trying to be a mini-NHS - is this not kicking in yet? Why not? why do we still have people in pain in the 21st century, but cant afford to get treated? I know that we all complain about the high taxes in the UK, but I can now see the benefits. If not for the NHS, i would be out of a job and bankrupt with medical bills.

A_terrible_comment2 karma

Is there any illness/disease you would NOT prefer to have?

ManInBlack105383 karma

Yeah, despite the pain and general cr-pness of this condition, lets face it - people have worse. its not terminal for a start. But if we are thinking non-terminal, my sister in law has MS and that scares me. Also Alzheimer's sounds really scary, as does Parkinsons. I think they scare me worse than what i have.

What a cool question -that one really got me thinking. Thanks :-)

iloveunicorns92 karma

There is a man somewhere in the states that grows and uses Magic Mushrooms for his cluster headaches. I remember seeing a documentary on the use of illegal drugs for medical purposes, do you agree with the use of them for this purpose?

I don't know if you'll receive this, I'm a little late on the wagon but I just remember seeing the documentary and then I just saw your AMA now.

ManInBlack105382 karma

Hi there. I have no problem with using mushrooms or any illegal drugs for pain relief. The way I see it, I need to live my life without pain, and if that means discussing with a judge why I chose to use a natually growing substance to relieve my pain - then do be it. A lot of rubbish it spoken about human rights, and people hide behind it for a lot of silly reasons - but surely there must be a basic right to live as pain-free as possible? A few people have suggested mushrooms, and it is something that I will be looking into it. I need to make sure that it does not conflict with my existing medications.

Thank you for taking the time to post, it is really appreciated.

Take care,

ManInBlack105381 karma

I have no issues at all in using mushrooms for clusters (or is people want to use them to explore their mind, again no issues). The way I see it, I have to be pain free, I need to be pain free, and if that means breaking a pretty minor and senseless law to be pain free, then so be it.

I am researching this at the moment as a lot of people have suggested this, but I have concerns over how it will interact with the prescribed meds that I am currently on. Cannabis is working will for the mild to medium attacks, but I cant even drink a glass of water on a major attack, so vaping is not an option then. Perhaps mushrooms would be easier.

Thanks for posting - everyone has been so supportive - i am glad that so many people are aware of the condition, and it turns out that through this AMA and some PM I have managed to give some advice to new sufferers as well, so it has been a very worthwhile AMA. I have learned, others have learned, its what this forum is all about.

Cheers, ManInBlack....

drdrizzy132 karma

nerve block costs around 1200 in the states

ManInBlack105382 karma

Every post I read reminds me that the NHS gets a bad press for no reason. I have through out my life always said the NHS is there to catch you when you need it (never realising I would need it) and now that I see the cost of medication, I am so grateful for our system. Thank you for taking the time to post. Cheers.

beargrowlz2 karma

A family friend is a cluster headache sufferer, and as a migraine sufferer myself I can honestly say nothing terrifies me more than your condition. I can barely manage one migraine, I can't even imagine the pain that you must go through.

I don't even have a question, I just have a lot of respect for you. Thanks for this AMA.

PS - The NHS really is amazing!

ManInBlack105382 karma

Thank you so much for your words of support. To be honest, its no different from the recovery you go through after a migraine. Its just the cards we are dealt! At least now, its diagnosed as clusters, and we can treat it as such - so the preventative meds path is different, and we might see an improvement on the horizon. Stay strong, we all go through it, thank you and take care.

sadchap2 karma

I suffer from debilitating migraines every Saturday guaranteed.
I can't remember when I last enjoyed a Saturday off.
To deal with this I generally dose myself up on whatever pills I have and try to sleep (Normally codine) I think I should probably go see a doctor as I get them every Saturday, and on a Sunday too sometimes.
My girlfriend said maybe I have cluster headaches, but reading your experiences and the wiki info I don't think I do. Anyway, I don't have any questions for you, but just wish you all the best dealing with this condition, and thanks for sharing your thoughts and experiences with the NHS, it's always good to hear about the good things they do!

ManInBlack105383 karma

Wow. That sucks. Codine was good for the migraines if I took it early enough, but ask about getting a migraine specific treatment. They'll start you off with a wafer called Maximelt. Put it under the tongue and it dissolves. It's not a painkiller but it aborts the migraine attack. Good luck my friend.

drippydick1 karma

I've heard cannabis helps with headaches.

ManInBlack105381 karma

It does, for the mild to medium events. (and I enjoy it as well!!) Nothing touches the biggies though!!

Rukus5431 karma

Have you ever been confronted by someone saying "some event" hurts more. If so how did it go down?

clipmann5 karma

Not op, but could answer.

I shared once with my sister (who is a mother) that women sufferers claim that its more painful than child birth. We argued back and fourth for a while,,,, never resolved it to either of our satisfaction :)

What really gets to me, is any of these common replies that i often get: "Oh, i know, i have had a headache all day too", "You should try to keep yourself hydrated, I bet you its lack of water", "You look like you broke your nose, try to get your nose fixed", or "Look, just try not to think about the pain."

I want something embarrassing to happen to these people, publically. Nothing, bad, but still.

ManInBlack105383 karma

oh, drink some water, thanks random co-worker, if only I had thought of that sooner.

I know some people are really trying to help, but some people are so bitchy and passremarkable. That soon stops the day you simply collapse in a heap, featal like on the deck, unable to move, ambulance called as you can't even speak properly (one co-worker later said I sounded possessed!). That tends to let them know what scale of pain we are really talking about. The comments soon stop after that

ItsPronouncedTAYpas2 karma

Or, "oh yeah i had a headache last week too. It sucked." Shut up!

ManInBlack105382 karma

Yeah, I've had that. "Just take a few ibuprofen and walk it off." The problem is I dont want to sound like a hypercondriac. Chances are that eventually they will see me in a bad event - one where I cant walk or speak. That tends to stop that kinda chat, so I tend to let these things sort themselves out and let people realise by viewing - that the problem with such a rare condition with such a misleading name.

Why call it headaches> its like calling epilepsy "minor twitches" - no, its a full blown neurological condition that the patient has no control over, and once Chronic Clusters get the same level of understanding, we'll be in a better place. PS that may come across as insensitive, but I hope you can see the example Iam trying to make. Its not meant as offensive at all. If anyone is upset by this analogy, message me and I WILL remove it.

clipmann1 karma

Fellow cluster headache sufferer right here. Im really, really sorry that you are going through this. I do not get them chronically, however, I am in the middle of a period right now. Inhaling oxygen works wonders for me, have you tried it?

Last night especially was horrid, the pains just lingered in an out all night. My oxygen tank ran out :( and the company that was suppose deliver a fresh tank earlier on the day did'nt. This morning i discovered that they did not deliver it because "the driver did not find parking downtown". He did'nt call afterwards, or nothing, just f###ed off somewhere else.

ManInBlack105382 karma

Yeah, the oxygen is the best thing that Ive tried aside from the Imigran (but that has limited uses in a day -O2 is unlimited and 100% natural). I will normally sit on the oxygen for half an hour and it may abourt, or at least hold it off long enough for something else to take effect (Zomig or zydol depending on severity.

Im sorry, but I would be reporting the oxygen driver - thats poor show. You cant just drive off when your job is Medical! If you dont report, how will the company know what he is doing. At least with you and me, its painful but we dont die without it -what if the O2 patient needed it due to respiratory issues and the driver just f--ked off? all weekend and no O2? Report that SoB

lil_morbid_girl1 karma

I have suffered from cluster headaches on and off all my life, I've had migraines that on occasion have left me feeling like I've had a stroke. The worst bout I had I was having them every for a week plus. No medication had helped and all the triptans didn't work if anything maybe curbed the nausea. Iam now on propanolol for panic attacks but also to help reduce my migraines. At present I have been migraine free for almost 9 months this is the longest I have gone in my life. I Feel I would like some sort of brain scan to make sure all is ok but my doctor fobs me off and gives me a different medication... Do you think I'm over reacting or should I just accept I have migraines and will have for rest of my life.

ManInBlack105382 karma

Not overreacting at all. Its your body. get a scan. If all it does is give you piece of mind, it is worth it. I got the CAT scan done after the Dr made a house call and thought I had some sort of brain bleeding going on (sorry for the lack of medical term here!). He had, and I quote, "never seen an individual in so much obvious pain and distress". Off to A&E, various scans and tests. At least now I know its not a tumour or bleeding. Please, get it checked. Dont get fobbed off - its your body, and the only one you have. I wish I was not fobbed off 6 years ago - I could have saved a whole world of pain if I were referred sooner. Remember GP are just that - General Practitioners. as good as they are, they can't hope to know every condition out there, especially one as rare as this. You may have to accept that migraines may be with you long term (although sometimes they do disappear over the years) but there are preventative pills you can take everyday - its just a matter of finding the ones that work for your body.

arstdderpvelopment1 karma

Do you have a job? If not, do you receive disability? I can imagine that would be so hard to function with! Best of luck to you!

ManInBlack105381 karma

Yeah, I have a job. About 4.5 years ago, a couple of friends and I were made redundant - so rather than take up separate jobs in the industry, we formed our own company. I've never looked back. Totally ace. Now that this beast has hit me the way it does, I can not imagine any other job giving me the degree of flexibility that the guys do.

No disability - I don't fit any of the known categories! How rubbish is that. This is the most debilitating thing I can imagine. If I were in a major attack and the house was on fire - I would burn without someone else getting me out - thats the level of disability during an attack. But the condition is not on the check-sheet, and there is too many chancers pretending to have nondescript bad backs, so they just don't believe the pain or levels of disability during the interview

Blbyram1 karma


ManInBlack105382 karma

Thank you for posting. If we can all raise awareness, then the next time a random Redditer hears of a sufferer, they can say "Hey, I've heard of this condition, go easy - they are not simply headaches". Yeah, the biggest understatement the medical profession has ever made! I didnt want to do this AMA to come and moan bout what a hard life it is for all the sufferers, but to let people know what we go through and to offer hope and support for any sufferers who think they are going through this alone.

I'm so glad that you've not had an attack for 8 months - long may that continue. Take care and good luck

Zaktastic1 karma

When did you first start getting them?

ManInBlack105381 karma

I guess the clusters were about five/six years ago? not too sure as I ve had migraines for about 15 years ,but its only in the last 6ish years that they have got to the point of being daily rather than every three months or so.

Copy from another post: > About 15 years ago - started off as migraines then (one every three months), but changed forms about 6 years ago and became increasingly regular. The Dr admitted that this was not migraine behaviour, did the usual CAT scans etc, and eventually sent to a Neurologist

[deleted]1 karma

I get cluster headaches, but they are far enough apart that I haven't bothered to do anything about it. Sometimes I have several in a day, and sometimes I go a month or two without any at all. Is there a good chance that they will continue to be more frequent? I've had them since I was a small child, and though I haven't really paid them much mind until recently, they have definitely started occurring more often. Will it make any difference if I seek treatment now as opposed to later?

ManInBlack105381 karma

I wish I could give you an answer, but I only know my own experience, and that doesnt mean that the way mine developed will be the same for you. I would say that it is worth seeking treatment now as opposed to later, even if that is just for two reasons: 1) Get the preventative meds balances. This might help things in the long run 2) get a stock of Zomig and oxygen so that you can combat the attacks when they happen.

Good luck, please seek medical advice as I have no idea how it will progress. Feel free to keep me in touch - PM anytime - even if thats months from now, just letting me know how you are getting on. Just know that you can live with it, and you can get by

Fyve1 karma

Are there any long term side effects? Are these headaches slowly damaging you beyond repair, or is it literally just a shit load of pain and nothing more?

ManInBlack105381 karma

As far as I know, there is no long term damage to the brain - which is so reassuring. At first, you can not believe that you can have this level of pain without some sort of scaring on the brain, but its more down to blood vessels in the brain contracting (or expanding, can never remember which) and causing the most unbelievable pain. I am so grateful that there is no long term damage though....

monsoony1 karma

Out of the headache preventatives you've tried, have you been prescribed topiramate? If so, what was your experience while taking it?

ManInBlack105382 karma

Topitamate is the new one I am trying. Only been on it for 4 weeks now, so early days yet. The side effects are a bit brutal, but they are calming down now - so as the dosage steps up, I am hopeful that we will see a difference. Did it work for you?

Duffalpha1 karma

I get these about once per year for ~2 weeks... Unfortunately I'm in the US and my last four hour hospital visit (for imitrex) cost me 18k. Any recommendations for self-treatment...? They usually come in fall and i don't want to deal with this shit...

ManInBlack105382 karma

$18k? I don't know how to . . . I mean, I'm typing hoping that I can express my disbelief but the words are not coming out. I've been to A&E with this, and there's no way I could afford a 18k bill -especially not with the frequency I get them. I am so sorry. We do sometimes take the NHS for granted, and then your eyes get opened.

Self treatment: if you mean treat at home before it gets to the hospital stage, the keep some Imigram or other migraine specific abortive treatment to hand nd take at the first sign - do you get warning aura? If you mean treatment without drugs, then I've not yet found anything that works - a feeople are suggesting LSD or mushrooms but I don't have any experience of that myself yet.

Sorry mate, hope you get through. Drop me a pm anytime