Newbie help UK

[ClusterHubby]

Hi all,

I'll get straight to the point. My wife has just been diagnosed with chronic cluster headaches having suffered a single episode approx 6 months ago. This CH started 3 days ago and shows no sign of stopping.

She is 31 years old, a mother of two boys, does not smoke / drink and has an underactive thyroid. She had suffered migraines in the past but we now understand the difference between the two. She has the bright red eye in her left side and is suffering approx 8 attacks a day. The most difficult thing for me is watching her writhe in pain and feel utterly helpless.

She has been prescribed 50mg tablets of sumatriptan which help a very little. And yesterday in the hospital I believe she had sumatriptan as an injection which help a lot more. We cannot get this at home at the moment as the pharmacist told us there is a supplier issue.

My wife is currently on her way down to the hospital to hopefully get another injection which I hope will help as she has ran out of the tablets this morning. 

She was also on oxygen yesterday which did not help much.

I have picked up CBD 500mg oil which she is willing to try in vape from.

Can anyone provide a starting point for help, especially within the UK with having the NHS.

[Tony Only]

UK people can help you much more, I'll just say about triptans (sumatriptan): tablet form is useless for most of us. There is an injection and nasal spray that are used and work fast enough, injection is faster. Triptans are problematic too since one should only use very little of them (not too regularly/over use - doctors orders vary a lot what is safe) because they are able to keep cycle going and even make things worse. Oxygen is equally effective, it really is, and can be even more so. Oxygen is safe, it won't make CH worse. It takes some effort to get an oxygen treatment setup right. You need high flows (15-25lpm litres per minutes) and prescriptions usually have way too low flows to help us. Plus a good mask, cluster headache mask, non-rebreather mask. Please read the oxygen file on the site.

Anti-inflammatory regimen (Vitamin D) helps many (at least 80% of us) and is safe compared to prescription medication we get. Other can guide you further. Did I say oxygen ? O2 will be a life saver !

[ClusterHubby]

Ok. I'll speak with my wife about giving the 02 a try. I'll read up on the vit D. She is in the ER at the moment waiting to be seen. 

The lack of awareness on this is astounding...especially amongst medical professional. 

What's the best outcome, just live with it and manage as best you can?

[Tony Only]

CHfather has compiled an absolutely astonishing O2 article, it's on this site. Batch can help you best with Vitamin D. 

Even neurologists get very little education on clusters on their basic schooling so usually we are bringing more awareness and information from patient communities to them on each and every visit if they are the kind that listens.

Best outcome is to find a way to prevent cycles and attacks happening altogether. Only known way that could happen by itself is old age and that group is tiny; who have their cycles disappear probably due to changes in hormonal activity. I would not count on that and I dislike doctors telling that to CH patients.

We have no medication for clusters and that might not happen for a pretty long time. There is no prescription medication one could use year after year cycle after cycle that will keep on working or the side effects would remain tolerable. As personal opinion, many go from episodic to chronic (worse) due to too much medication and because at some point you have to abandon 1st and 2nd line of medications and turn to (usually less effective) 3rd and 4th line of medications. I am unable to recommend that route to anyone.

Luckily nowadays we have self treatments coming from patient communities such as this one. Depending on the severity, on "lighter" cluster Anti-inflammatory regimen (Vit D) alone might lead to pain free life. Episodics who have transformed the condition into more severe may need something else too and especially chronics. The most effective treatment is busting, using tryptamines (hallucinogens) to prevent cycle from starting. People take them 1-4 times a year approx, they are not used all the time.

Here is more about that https://clusterbusters.org/treatments-options-choices-and-more/psilocybin-and-lsd-in-the-treatment-of-cluster-headache/

For the outcome part, anyone who ever asks me that, I would advice to read this blog, completely - but it is in finnish and I don't know what kind of a job translators would do to it. It is a magnificient piece of work by a friend and clusterhead, Niklas Koponen: http://sarjoittainenpaansarky.blogspot.com/

Edited November 24, 2018 by Tony Only

[Freud]

I’m sorry you have to deal with this but your wife is lucky to have you!  As far as treatment options go. Verapamil which is a blood pressure med is first line therapy with oxygen. As tony stated for some it’s a matter of high flow and the right technique. The verapamil is started at a low dose 80mg 2 times a day and is increased every 7-10 days w BP and ekg checks inbetween up to a dose of 1000mg daily divided into 3 or more doses. I’m on 640mg a day and I have to divide it into 4 doses. I get blurry vision if I take more than 160mg at once. I am chronic as well and have had great results busting and preventing with mushrooms. I haven’t tried RC seeds yet. But in the uk you could get a ready to go mushroom grow kit from the NL. I know they ship to the uk. There is a way to beat this for most and you can stay relatively pain free. Stay strong be reselliant. 

 

Brian

[ClusterHubby]

Hi,

My wife is currently on 15lpm of oxygen and just had an injection of sumatriptan  I have just arrived to the hospital (finished my shift). The combination of treatment is helping slightly.

She looks to be in so much pain.

The vit D regime looks interesting but also quite complicated, are there any examples of what we should be taking. The wiki article left me quite confused.

What mushrooms would we need? And what are RC seeds?

Thank you for your time. It's really appreciated.

[ClusterHubby]

Just an update, we have arrived home. Wife is feeling a lot better. We were given the nasal spray to try, the injection helped for now...the spray is for when it wears off.

Importantly we have an appointment with a nurolgist on the 6th Dec and from this they can set up a treatment plan, including the oxygen. It's usually an 18 month wait on the NHS but they were able to fit us in which is great.

During this appointment I will listen to the advice and I will raise the issues of vit D and verapamil. They will probably not give advice on mushrooms etc.

I will update this thread as we go, a huge take away and encouragement is that so many people can survive this and live a quality life.

[Tony Only]

I tend to be preachy about verapamil, it's a drug that creates lot of heart problems. Anyone who is on it, needs a checkup (heartfilm) every time dose changes by 80mg or more. This is the official guideline but many doctors skip it. 240mg is a normal dose for someone with heart issues. Since we do not, 240mg is a bit high. But clusterheads have survived from 1000mg daily or more, myself included, with a heart failure though. I personally would recommend to try alternative safer things first, not simultaneously with verapamil, but that's just me.

Did you read this article already ? https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people - there's a chart (labeled Update Jan 2017) that should be more simple. Some people who start vitamin D as en emergency only take Vitamin D (for an examply 10,000IU per day) and Vitamin K-2. Then they will do complete regimen when they have blood work done. It's important to check the Vitamin D levels with a blood test.

The Psilocybin and LSD page I linked really covers the mushroom and seeds part. It's good to read completely over time, since you must not "just" take these substances but also learn what you are doing. Psilocybin mushroom is the kind we need or seeds that contain LSA (often called Rivea Corymbosa or RC seeds or ololiuqui seeds). Mushrooms is more of a "trip", seeds is more of a nausea.

Here in Finland it depends a lot of the doctor what they think about Vitamin D although it should not really be a matter of opinion. Some recommend it, some forbid it. Doctors are unable to recommend psilocybin and I think many do not know about the subject at all unless they are linked to patient communities. There may be judgemental views too.

I think the decisions made in the beginning will have a huge impact on the forecast what cluster headache will be later in life. Too few find all the options available to be able to make the best decisions. I wish you all the best and pain free life for your wife as soon as possible.

[ClusterHubby]

Thank you. I'm thankful that we have a lot of options to try. It's almost overwhelming. It's hard to know where to start as she needs it now. You have given us hope. 

On a side note after 2 hours of respite it's back in full force. It's so distressing.

[CHfather]

So sorry, 'Hubby.  I'm a supporter myself (my daughter).  I know how terrible it is to see that suffering in someone you love.  As others have said, though, it's going to get better.  

Such great perspectives you have now received from two of the greats, Freud and Tony Only!  I'm troubled that her attack resumed, or she had a new attack, so soon after the sumatriptan injection, and by the number of attacks she is suffering every day.  I hope your neurologist will look closely at all the diagnosis options. (From what I have read you to be saying, there is no reason that she should be diagnosed yet with chronic CH -- chronic means a year of essentially uninterrupted attacks).  In our experience, you get better advice and treatment from a headache center than from a standard neurologist. 

I say this a lot, and I'm often wrong, but I would want to be sure that the neurologist considers hemicrania continua as a possible diagnosis.  That's a condition that has many symptoms similar to CH (and similar to what your wife is experiencing), but unlike CH it is treatable with a single medication, called indomethacin.

When they gave her the O2 in the hospital, was she breathing it through a mask (or just with those tubes that go into your nose)?  Mask is essential.

It's my understanding that Ouch(UK) has been quite helpful to people with CH, particularly regarding getting proper oxygen promptly.  https://ouchuk.org/  I looked there for information about the Imigram/Imitrex shortage, but didn't find anything very current.  I urge you to be persistent about this (while also considering the negatives about those injections that have already been mentioned).  If she does go that route, be aware that the injectors can be opened so that she can give herself smaller doses, which are sufficient for most people with CH and not as damaging.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/   The nasal sprays do help some people, so I'm hoping it turns out to be that way for her.

 

 

 

[Tony Only]

Thank you for kindness CHfather. And true wisdom. That's pretty good word; perspective - that what we are offering here. I have a style of writing that I am preaching or seem like know-it-all but I'm always just offering my perspective. Nowadays I try to insert as much "in my opinion"s and "my personal view"s as I can. I completely missed the chronic part and yes, looks like your wife had a pause in attacks so she definitively is an episodic. I know that some doctors may label 6 months as chronic if cycles arrive whenever but that is rare.

Our finnish group is supposed to be CH only group but just yesterday someone asked if others have another headache condition with cluster headaches (she had been told it is rare) and she got 70 replies in one evening. At least in finnish CH group quite many have something else with clusters, they seem to be more often women and diagnosing and treating is more challenging. If a person has even more than 2 conditions inside one head, telling one from the next and which symptoms belong to which one is pretty challenging. These are the most usual ones to have with clusters, in our group: migraine (with aura), migraine (without aura), hemiplegic migraine (2 types), (often chronic) paroxysmal hemicrania, hemicrania continua, trigeminal neuralgia, basilar-type migraine and SUNCT. Around in this order - I hope I got the names right and did not confuse by saying something twice with different names.

Some things I though about the next attack arriving so soon (and if I understood correctly pretty severe); it's important to stay on the O2 a little while (at least 5-10 mins) counting from the moment when last little spark of the pain is gone, keep inhaling it for a while - this ensures that the same attack will not come back after a while. If you are able to get higher flow later on, this might help too. Sometimes when CH cycles begin, for some they can be furious at first. Hits just keep coming.

One more thing, when CH began, did your wife have any kind of trauma to her head ? Especially physical but I would think of serious mental kind of traumas as well. These seem to be more common in more challenging patient cases when the cluster symptoms or diagnosis is not obvious. Good luck to the future !

Edited November 25, 2018 by Tony Only

[Dallas Denny]

Hi clusterhubby!

Chf is spot on with his statement on OUCH-UK....contact them for assistance with the H.O.O.F form for home oxygen....ya'lls NHS recognizes oxygen as a front line treatment for clusters so regardless of any docs reluctance to prescribe it, you are entitled to it by your health care system!!

Dallas Denny 

[Maria Wilson]

18 hours ago, ClusterHubby said:

Hi I’m cluster hubby’swife. Thank you all for all kind word of support and your expertise and experience in this matter I’m currently at my mothers house she is looking after our 2 young children. I have just been awakened by yet another cluster headache attack this is the 5th one today I’m in absolute agony but there is no more injections left in the hospital i got the last one last night and I’m down to the last one of my nasel spray. At the moment  sumatriptan injection with oxygen seem to take the pain from a 10 down to about 3-4 when an attack happens I seem to be getting a few hours relief then the CH is back with a vengeance I’m getting no warning as to when it happens I haven’t had them that long to read warning signs if there is any for me. I have suffered migraines since I was a young child i think I was 5 and still have them mostly everyday. I had my 1st CH in April 2017. It just came on one night I thought I was having a stroke I went to hospital the next day they didn’t know what was happening until a doctor said it was cluster headaches. But I’ve had attack’s every single day now for the past 10 days. Sometimes 8 or more a day. Today I’ve had 5 so far on Friday the hospital understood that it was cluster but didn’t know what to do for treatment I was giving loads of painkillers and anti inflammatorys as well as IV paracetamol and codine none of these had worked until they give in put me on oxygen and give me the sumatriptan injection 15 mins later I felt loads better so I was sent home with a referral to the headache clinic and a prescription of indomethacin they have not worked at all it is literally just like drinking water. I was also able to speak to the neurologist and he said it seems like chronic cluster headache but tbh to me it’s sounds more like episodic CH. So without proper medication I had to go back to the hospital again yesterday where I had a 4hr wait in A&E the A&E doctor was amazing she knew exactly what to do was giving the injection and on high flow oxygen with just one conversation with her. They sent me home with 2 sumatriptan nasel spray I had take one last night just to have some sleep last night. The attack’s has started again at 4am where the previous night for the past 9 days I was awakened at 1.30am so the nasel spray seemed to had delayed the CH some what. Also at the hospital they where able to give me an appointment for the rapid response neurological team they is for the 6th of December they said they will probably be able to get me oxygen for the house. So at the moment I’m currently waiting to take the last nasal spray as if yesterday was an indication I’ve a long day ahead of my and I’m reluctant to go back to the hospital. Sorry for the winded reply and thanks so much I’m advance of any replies.

 

[CHfather]

Hello Maria. So sorry for what you are going through.

It's my understanding that indomethacin can take a couple of weeks to be effective.  It might not help at all if you don't have some kind of hemicrania, but I wouldn't give up on it yet.  Indomethacin can be quite hard on your digestive system -- painful or at least uncomfortable for many people, but not all. Often it is prescribed along with a medication like Nexium or Prilosec, to protect the stomach lining.  (One reason I suspected a hemicrania is that your response to the CH meds has only been partial, and that's a pattern in hemicrania.)  

Couldn't the hospital write you a prescription for some form of sumatriptan?

One thing that often helps people with CH is to quickly drink down an energy shot such as 5-Hour Energy as soon as an attack hits (or if you learn to feel one coming in in the moments before an attack begins).  It will often make CH attacks less severe, and sometimes abort them.  Some people find that taking melatonin at night, starting with about 9mg, helps with nighttime attacks. (I just remembered that melatonin is, or was, only available by prescription in the UK.)

Aside from the possibility that indomethacin will help you, I don't think you are taking any CH preventive meds (I'd have to read back more carefully to be sure).  Oxygen and triptans are abortives, meant to stop an attack, but preventives, such as verapamil, are meant to keep attacks from happening. Sometimes a course of steroids is used to stop the pain (or try to stop it, usually successfully) for a while, so that the preventive can get into your system enough to take effect.  (I have no idea how any of this interacts with your thyroid condition.)  The vitamin D3 regimen is also preventive.  Doctors sometimes prescribe preventives other than verapamil, such as Topamax or gabapentin. All CH prescription meds, except oxygen, have side effects, and people have strong opinions about all of them.  Most people here find that if they can, they strongly prefer to rely on treatments that don't seem to have significant side effects, such as D3, oxygen, and "busting" (ending cycles and potentially preventing them using psychedelic substances, sometimes at levels that have no psychedelic effects).  There are also new migraine preventive meds on the market that show some promise of possibly helping people with CH.

I guess my overall point is that there's a lot more than can be done to treat CH if that's what you have, and I'm hoping you get the best of advice and treatment at your December appointment.  To get a straightforward sense of pharmaceutical treatment options, you could google [goadsby treatment of cluster headache] (without the brackets).

Wishing you the best and optimistic about much better times to come.  It's great that hubby is so much on your side.

[Maria Wilson]

Hiya they give me prlosic with the indomethacin I’ve to take one 3 times a day. And the prevention they give me begins with an A I’ll find out later when I get home I’ve to take it only at night but can’t remember the name of it. The energy drink I tried was the monster drink it seems to take the edge off a bit. I’m literally willing to try anything. I know my husband has been amazing and is doing lots of research on this. Thanks much for your advice.

[CHfather]

When people find an energy beverage that works, they tend to stick with it, so there are people who use energy drinks such as Monster and RedBull.  The thing about energy shots such as 5-Hour Energy is that they actually contain considerably more caffeine than a RedBull and most Monster drinks, and caffeine is considered to be the primary agent, although other ingredients are also believed to help.  Having more caffeine and being much easier to drink down quickly makes the shots preferable for some people to the drinks.

[Tony Only]

If your treatment in the future allows it, I can wholeheartedly recommend the Herbal Protocol: https://sites.google.com/site/hortoninneuralgia/resurssit/englanti/liquorice-root-protocol

Many who feel that using energy drinks regularly gets them in too high of a gear or upsets the intestines prefer Liquorice root, as tincture or as powder (which can be bought from a general store) although nothing beats fresh herb.

[jon019]

Hi Maria...you and your MOST EXCELLENT hubby/supporter(we LOVE us some of those) have a whole bunch of folks here who genuinely feel your pain and desperately want to help. I would caution you and US not to throw EVERYTHING you hear and read about this at the beast at the same time. One of 'em is gonna work...we KNOW that...but the danger becomes when it does.... WHICH ONE!? Systematic trials of known treatments (e.g steroid taper (10-14 days), verapamil commencement (480 mg/dy of immediate release version is reported sweet spot for ch), and O2  is one….with triptans (Imitrex, Zomig, et al) for breakthroughs. Busting is another with O2 standby. Oxygen plus energy drinks another. D3 regimen can be taken pretty much no matter what else as it's good for a body regardless of ch or not. Like CHf said about Indomethicin...may take a couple weeks to be effective. I'd also read the O2 file for proper usage as many have given up on this life saver too soon due to inadequate flow or mask or technique.

Is the "a" preventive amitriptyline? That's another...lower on the success list than others...but I'm not your doc. Hoping for a ch cognizant neuro for your appt...and just delighted that your system allowed for an emergency queue jump.

Best

Jon

[Siegfried]

Hello Maria,

Ketogenic diet is something else you can try and it seems to be very helpful for chronic cluster headache patients. I do not know much about it but what I know is that with this diet, the body is forced into a ketosis state where it does not use glucose as energy source (sugar and carbs) but uses fat instead.

Regarding hemicrania, there are two types:

Hemicrania Continua is a 24/7 background pain on one side of the head with exacerbations that have the characteristics of moderate CH attacks. Important for HC is that the background pain is always there and never goes away

Paroxysmal Hemicrania resembles very much cluster headaches but there is one big difference - attacks are much shorter (2 up to 30 min) and occur at least 5 up to 40 times a day. Here is a very detailed review of the condition from a Dutch sufferer (in Dutch but you can translate it with Google) 

https://people.zeelandnet.nl/vdwindt/migraine/hemicrania.htm

Both conditions have an absolute response to indomethacin and response to it is a must to receive the diagnosis. 

All the best !

siegfried

 

 

[ClusterHubby]

Hi folks, apologies for not updating this thread. Just to let you know the last few weeks have been quite difficult. No real days off from CH, just days where intensity and frequency vary. We have seen a neurologist twice now. The first occasion he conducted a nerve block which did not help at all and prescribed melatonin and steroids. The intensity of the CH only seemed to increase while on the steroids, this course has finished today.

Today my wife got multiple nerve blocks and steroids into the forehead / temple / back of her head. It gave about 6 hours of relief. We also start verapamil tomorrow at 240mg and we will review in two weeks. 

I'm very hopeful for this but also understand that we have to start at the lower dose and work our way up.

Still waiting on the oxygen but taking vitiman d.

Thank you all for the kinds words and advice.

[xxx]

ClusterHubby,

How much vitamin D3 is your wife taking?  Is she taking all the cofactors?  Did she start the 3-month course of vitamin B 100 complex?  Has she had the lab test for her serum 25(OH)D?  If her serum 25(OH)D is not up around 80 ng/mL (200 nmol/L), she needs a higher vitamin D3 maintenance dose.  Many CHers with her problem found relief by taking a 50,000 IU loading dose for 3 to 4 days then dropped back to a new vitamin D3 maintenance dose of 15,000 IU/day.  Has she tried a first-generation antihistamine like Diphenhydramine (Benedryl)?

Don't forget diet.  Zero sugars, zero wheat products and low carbs... The Atkins or Ketogenic diets can work wonders... Is she drinking at least 2.5 liters of water a day?

Sorry for all the questions... It's just there's almost always a reason why this regimen isn't effective.  The trick is finding the problem.

Take care and please keep us posted.

V/R, Batch

 

[Freud]

HI clusterhubby, forgive me if this has been covered but are the neurologists going with clusters as the Dx.  If so are you against trying seeds, it seems like the fastest and mildest way to bust?  I feel for you and your wife and I hope she gets lasting relief soon. 

 

Brian

[MoxieGirl]

Hi Maria and husband,

I live in England, and will help if I can. Although I don't get on the board as often as I'd like, but will make a fresh effort. 

I was originally diagnosed by a neuro at Addenbrooke's, one of the best headache specialists in the country I believe. I have chronic daily headaches, chronic migraines and chronic cluster headaches. I can easily have 300-500 headaches of one type or another in a single year. 

To be honest, the people and methods on this board were more helpful than anything the doctors gave me, but is worth trying the different things they have on offer, as it does help some people. Oxygen should be high on your list as an abortive, the Vitamin D3 regimen is also really good, and Batch is a very helpful fellow. 

When I started busting, I was getting 2-5 cluster attacks a day, ever 2-3 days for about a year. Each attack was lasting 1-3 hours, or more. Then I started busting, and now I get about 1-2 attacks a month that last 1-10 minutes. I sometimes have a really rough one that lasts 20-30 minutes, and is maybe a KIP 5 or 6. But that's only 2-3 times a year. Migraines are my challenge at the moment, I'm quickly approaching my 250th for this year. 

Hang in there, don't lose hope, there are things that work even if the doctors don't understand them yet.

MG

[Oli]

Hi Maria and partner, im also from the UK, and thought i'd add my experience and send my well wishes. Im currently out of cycle, but found great relief in this forum a few months ago.

There is a lot of information in this thread and i haven't read every word so forgive me if i repeat things already mentioned.

The biggest relief for me was a combination of daily supplements of taurine and magnesium, the magnesium i took 1x 250mg in the morning and taurine 3x 500mg over the day. 

I had been given the run around on at-home oxygen previously but this year i went to my GP armed with a form and got a prescription for oxygen sent onto a delivery company within a day or two - i had to go through a locum and then chase the dr's secretary so she understood the requirements (this was a struggle but calm polite persistence got me there in the end) once the oxygen company gets the prescription they can deliver within 4hrs. make sure you get at least 5 tanks so you dont need to call them out for replacements each day. a usual delivery for them is next day, not same day - but they can do an emergency 4hr delivery if you run out, but can never exceed the prescribed amount. also ensure you get the correct face mask, the delivery company will be able to help on this. 

When i feel the slightest twinge of an attach i drank two cold cans of redbull and got on the oxygen, breathing deeply in through the nose and out through the mouth. doing this in a dark cool room with a comfy chair. time how long you are on the oxygen, when you feel full relief, note the time and start a countdown of the same time. If you find the oxygen becomes ineffective, check if the tank is nearing or less than 50% empty / full - some people are affected in this way, switch to a new tank and complete the time.

I found that the oxygen delays the attacks, but relief could be for a day or a few hours. I used to get one horrific attack a day, on the oxygen i could have 8 or so, but was able to get the pain down usually within 10 minutes so i could function. im very lucky my attacks only last a month.

i looked into the  mushrooms and did one treatment with some liquid mushrooms, but later found out the dose was lower than labelled. this dose caused one of the worst headaches the next day - which the oxygen did little to stop. i have since done the regime with dried mushrooms through tea. i am hoping this will mean i dont get my attack month back for longer than the usual 2 or 3 years.

I hope some or any of this may be of use to you, and you find relief in some form. Also, it can be really useful to log your attacks, i found after logging everything i could that i was actually under reporting to my GP. I log pain level, oxygen on / off, and a few other symptoms and it was extremely useful to let my GP see it all first hand.

One last thing, as it almost the holidays. Certain perfumes can REALLY set me (and maybe you?) off, beware of relatives with liberal perfume, candles and other festive "treats". 

All the best, and good luck find your personal busting technique! 

[Twisted-Melon]

I guess it must just be me but I read the o/p and a follow up post and thought to myself that doesn’t sound like clusters , 

if I were you I’d be finding thee right doctor to get a difinitive diagnosis