my husband suffers from chronic clusterheadaches how can we cope as a family

Sarah,

Just wish I could help,I am on the sofa at the moment with the same problem have had continuous for far to long G P has just put me onsome medication ,but only had it a week so got to give it time but have tried so many,I know how frustrating he must be and the family looking on.I expect you have tried so much as well.

When I find a cure I will be rich and will tell you.not much help except you are not alone, keep ranting on here they are a lovely lot of people always somebody will answer you.

Take Care

Joan

Oh Sarah that is terrible! Has your husband had an MRI scan to make sure that nothing else is going on up there which could be the cause of his headaches?

As a migraine sufferer, I find find relief with oxygen therapy and weirdly really spicy food helps!

Have you tried to contact OuchUk? They are a charity organisation who should be able to help your family deal with this chronic condition.

Sarah, although I can't image what you must be going through, stay strong and do keep posting updates.

He has had alsorts of test MIR included. They have also tried so many different medications. In the early days they even thought it was a knotted muscle in his shoulder. He has just started some new medication but as yet no real relief . But I keep my fingers crossed I just wish I could help him

Hi Sarah, cluster headaches are by far the worst pain I have ever experienced, and I have had two children. I have had them nearly 15 years, mine started in school when I was around 13/14 and it's only now that I am slowly starting to manage them better. Mine happen several times a day for 4 weeks ( usually mild in begining and towards the end )

I have been back and forth to hospital / doctors etc and most of the time just told to cope.

How ever this time I seem to be coping better with a nose spray I have been given ( imigran ) much better than the tablets. This along with strong pain killers and steriods seem to be working at the moment. But the other treatment known to work is 100% oxegyn ( not sure how easy doctors give it out ) but I know it can work. Aalto I use ice packs on the side in which I have the pain, sounds silly but it helps calm me down, as I will pace and try to hit my head / pull my hair out. It's worth a try.

Experiance has taught me that you have to treat the cluster headache as soon as you feel the twinge. I always have shoulder pain on the same side when I'm having attacks so these are good signs one is coming.

Cluster headaches are awful to live with and most people don't understand Becuase they think it's just like normal headaches / mirgraine but for the person going through it, it's worst pain. People need to be more understanding.

Hope this helps an your husbands pain subsides soon

Kelly.

Stay positive Sarah!

Try to find a local support group. Meeting people in a similar position as yours will really help you cope through this. Over time, situations such as yours will take a significant toll emotionally on both you and your child. Having friends who understand and can support you will be invaluable.

I hope the new medications does help your husband.

Hi,

I am 58 years (Dutch!) old, female and suffered CH for the first time in 2011.

I almost wanted to die, never experienced that horrible pain!

Diagnosed officially with CH and now allowed/able to enter any hospital in Holland to get oxigen. Imigran was prescribed. I never used one of them due to knowing what Imigran etc.would/can do to me in the long run and already to much medicins and their side-effect affected my body in these 58 years.

If slightly possible I now only use natural 'drugs' like herbs etc. aside very healty food after 2 dissaster times (one with 10 days of coma after a minor stomachoperation...and smaller braindamaged for the rest of my life because of Oxigenshortage (how ironic), my legs are 'difficult' since), last 10 years, in the ICU following real mistakes maken by real specialists.

I survived that bearly! Eversince I am so very sceptical about regular medicins and medics.They only know 1/4 of what is really the matter in our supermachines bodies. They often

act arrongantly as if they know 100%. Together with to many so very dangerous drugs

they prescribe us. There is so more to know then only Western medicin!

Due to my upbringing and scholing (university/anthropology) I am not really a believer of

'holy waters' and weird healers, on the other end..."What is proven by (our rational)sience may be true, but also what is not proven (yet) can be true.." (Somebody is innocent until

proven guilty)

Perhaps also due to the fact that I lived in the jungle in CA where I witnessed natural

healings with herbs and mushrooms etc. just picked out of the jungle by a medicinman.

Long story how I got there..Short version

When the attack returned after almost half a year, I drank 4 tins of Red Bull within 5 min.(I have no heartcondition!!!) followed by Tea made of Truffles (Philosofers Stones). These

Truffles are allowed by my government, they were forgotten in the ban over Mushrooms!

It does not make me high!! It is not addictive! It makes me calm and the pain fades away for weeks. If you use Imigran the Truffle will not work so well. Your blood has to be free of

drugs like Imigran!

Do not use this if you have a tendency being psychotic!!!

I have a 'babysit' with me, as I (old lady with bags of possibilities in my Life in Holland...)

never had any experiences with drugs, not even with the real dangerous drugs you can

buy on the corners of your streets..like too much alcohol or even potentially deathly sigarets...( very very healthy for the governments bankaccounts and their pay cheques because of the taxes we have to pay over these 'poisons' -if taken too much-...)

The truffles are held fresh in your Fridge for about 3 months.

I really hope there will be some one stand up against the Farmaceuticals (+ their long arm

lobbies in the governments) who prefer chronic patients (so their stockholders see returns....) and do proper research, so it can be produced and used clean and controled by sufferers of all kinds of headdaches and even for depressed people (How many worldwide???!! iit is said to be helpfull as well!!

My own neurologist does not want to hear a word about me using Truffles, not even when it is not illegal (still but for how long...I plan to grow them myself now)

For me, scientist as well....here: "That what helps me stays in it's right to be true!"

As a Medic, as a scientist you made a promiss....do no harm...and one of the first things

I learned from my professor was...

"always hesitate when someone claims he, and only he, tells the truth, the truth is in many things...." A lot of medics forgot this and went for the money and 'rules' set up by....?...

Our governments go for the money...and the Farmaceutical Industry....??!!

I say.after so many years of deception...

" I am a free thinking person to believe what is true and if it works for me it can be true..."

Lots of love and I do hope in the UK you all CH sufferers can find your own way to strugglethis terrible dissease!

Hi sarah My head gets to the same pain as your husband. I have had clusters now for 6 years. At first its so scary, my doctor didnt know what it was and kept giving me rubbish to try. Then I went to another doctor who told me I had clusters headaches so now I know what it is you can try to help yourself. I tried immigran spray you get addicted, you are only meant to take max 8 per month, my head was so bad I was taking 20+ a month one shot sprays. Every time you spray it seemed to trigger another headache. When I tried to come off it my wife thought I was dying and called emergency services. It was like coming off drugs cold turkey and was awful, I thought i was a gonner. I have tried loads  of drugs  from A - Z even liquid morphiine finally I rang my doctor and told her I cant take any more I have reached the end the pain is too much, I have no life. My last chance was OXYGEN. Absolutely fantastic. LIFESAVER.

 My cluster pain starts as pressure behind the nose then pain goes down into the teeth around to the left side of my face up to the top of my forehead and then explodes and the pain gets stronger and stronger until you cant take any more, and you just scream out. BUT if you have OXYGEN ITS ok. 

When i feel pressure behind my nose I know a cluster is coming and go to OXYGEN at 15 litres flow rate with a mask and before the cluster starts the oxygen kills the cluster off, absolutely a life saver. Paracetamol Anadin Neurophen all a waste of time dont bother.  But Oxygen has to be got by your doctor from a specialist at a Hospital. once agreed they deliver it to your house.

But clusters forced me to pack up work so i retired 3 years early. Good luck I have every sympathy with your husband

Dennis

 

Hello. First of all does your husband have a headache neurologist, or any neuro?

He will need a preventative med and abortive meds. Abortive meds stop CH attacks.

The first to try is Oxygen - 15 litres per minute flow rate. Next is 'Imigran' a sumatriptan which in injection form will stop a CH attack in 5-10 minutes. All this is available on the NHS through your GP, it's stated in the GP's meds bible as the treatment for Cluster Headache attacks.  The very best thing to do is get in touch with OUCH (UK) and call the Helpline.   And do not go to the Netherlands to try any fungi... 

 

hi iam mark and was diagnosed with cluster headaches over 10 yrs ago and i know exactly what your husband and yourself are going thru.First thing is your husband taking sumatripton  because when my first attacks started i was not diagnosed with cluster headaches for over a year and was taking every painlkiller known to man with no relief.

I must say that when a person goes thru an episode of attacks they are in in so much pain that theyll try anything to relieve the pain 

I pace ,ive hit me head against the wall ive even broke down in tears.

what you need to do when hes in pain is leave him tottally alone because allthough you might be thinking your doing good  the slightest noise hurts him and also i dont think your husband wants to let you see him like that.

i will say keep an eye on his mental state over these attack because over a long episode it can really deppress your husband.

my heart goes out to your husband and your family its a horrible condition and no body relises the severity of the pain a sufferer has to go thru

ive been taking sumatripton and there the only thing that works for me and majority of sufferers.he still will have all the pain when attack  happens but 10-15 mins later pain will disapear

Hi Sarah,

i have just been diagnosed too after having 5 days of crippling headaches up to 8 times a day.The only relief I had was after 4 days when my doctor called an ambulance and they gave me entonox.the relief was amazing.However on arrival at hhospital they took it off me and with each episode (approx every 2-3hours) they pumped me full of morphine which did nothing.After reading around when I got home it appears that the oxygen in the entonox was what was helping.i am so angry they wouldn't listen in hospital as it might have saved me pulling big clumps of my hair out on the right side where the pain was and biting a big chunk out of my right lower lip.Oxygen seems like the way forward.i was given a sumatriptan injection but that didn't help.that could have been because I had had the headaches for 4 days by then.

i really hope things are improving for you and your family.When he has the attacks does he sometimes have pain free periods during those times?i have been pain free for 3 days now(apart from the lumbar puncture headache) and am so scared of it coming back.Hope you don't mind me asking and I wish you all the luck in the world

Claire

Hi seen this post from a few years ago and wondering how you are now?

Lots of helpful suggestions for your husband but I couldn't see much on how you can cope as a family. My husband suffers with them and I am at a loss how to deal with it. It's starting to impact our family life

There was an episode of 'Doctor in the house' - series 2 ep 1 on BBC (United Kingdom) with a similar case. May be worth viewing that.