Just Been Diagnosed With Cluster Headaches (male aged 55yrs)

Four weeks in and I'm now on Prednisolone and Verapmil (120mg). My life has change considerably and very unsure about the future.

My questions are :-

- How Do suffers cope with Life and in particular the lack of sleep, constant pain and inability to work (currently off sick for the first time in 39yrs)?

- Will i have to stay on medication (Verapamil) for ever?

I'm desperate for help and some honest answers. I'm also very worried that I wont be able to work.

My Gp is completely unsympathetic , which also worries me.

GerryJoe

18 Replies

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  • Hi Gerryjoe welcome 😁

    I know it's very scary when something hits you and takes over your life asvyou know it and to top it off it hurts like hell!!!

    Are you Uk? Have you seen a neurologist? Is it cluster migraines or cluster headaches?

    I have hemacrania continua and vestibular migraines and TMJD miraines so yeah migraine hell !!

    Had to give up work 1yr ago but don't intend on leaving it like that! ! Just need time to fight this ( early 5yrs solid daily migraines ).

    Tried all prevention meds, botox, DHE and ONB included. Now off all meds except sumatriptan injections or 100mg tabs or maxalt melts.

    I'm using cbd oil and getting good results. Also use green lenses for bright lights and sun which are definitely helping heaps.

    Sorry you've joined this club but you will get great advise from fab people

  • Nearly 5yrs solid migraines ***

  • Hi, I'm in Scotland and my neurologist has told me it is cluster headaches. There seems to be a lot of mixed information and remedies going about.It's about of a mind field. I'm just really worried that I won't be able to work with this. I have never been off sick in my entire working life .willing to try anything . GJ

  • Im scotland too 😁. I see you have lots of advice flooding in 😁.

    I have seen oxygen is definitely a go!!

    Gp can give you sumatriptan injections and seriously look at vits 👍 D3 and magnesium should definitely be in there 👍

  • Who diagnosed you? If you've not already seen a headache specialising neurologist, then you need to ASAP to make sure treatment is spot on. The National Migraine Centre is a great option as all their medical staff are trained headache specialists.

    Also, you need to get hold of oxygen (high flow, 12-15l per minute) as it works so well to abort attacks in a large majority of sufferers - and it's very natural. You also need sumatriptan _injections_ as part of your abortive arsenal. The right abortives mean you'll never have to experience the worst of the pain.

    For prevention, Verapamil doses can go much higher for cluster headache - some people need more before it really starts to work.

    You may also want to look into a very promising (anecdotally) regimen of natural supplements based around vitamin D3. Many people have found extraordinary relief from this.

    It's possible to live a pretty normal life with this condition. The key is getting the right diagnosis and treatment. Some people go many years - or decades - without the right diagnosis, so, try to be positive that you've got a diagnosis.

    In most sufferers (80%), the condition is episodic and may only raise it's ugly head once a year (or less).

  • Hi, my neurologist diagnosed me. I've read some good things about oxygen, not sure how to get a hold of it tho. I'm only 2weeks into my steroids and Verapamil.

    I'm just worried that I won't be able to work anymore.

    Cheers

  • Hi.

    Your neuro didn't prescribe abortive medication?

    The preventatives are obviously important, but you still need some backup for the attacks that break through. The sumatriptan injections and oxygen are so important for this and you should have been prescribed them.

    Your GP can sort out the oxygen. The NMC has the form your GP needs to complete:

    nationalmigrainecentre.org....

    How long will you be on prednisolone for? My understanding is that it's meant to be a taper - you shouldn't be on it for very long.

  • Hi GerryJoe,

    I don't know if you've seen the recent post by 'Bradrob' I copied and pasted it below. I'm diagnosed with Hemicrania Continua/ Chronic Paroxysmal Hemicrania, but have never been given any reasons/ causes as to why one day I started having pain in the left side of my head and neck which Haas never left, accompanied with memory issues, being unbalanced and left sided paresis.

    What Bradrob found success with is particularly interesting because recently it has come to light that my symptoms may be related to heavy metal toxicity (I used to work in Building Services and worked with Lead and unfortunately came into contact with Mercury on a number of occasions, not to mention amalgam fillings of which I had several)- and Selenium is natural chelator of Mercury from the brain (brain and kidneys are where Mercury has an affinity to accumulate) So I'll be trying Bradrob's suggestions 🤗 See below

    Cluster Headache - No More!

    bradrobbradrob 4 days ago 8 Replies

    I suffered cluster headaches for 18 years, which consisted of clusters of about 5 weeks, 3 times a year. My last cluster was over 2 years ago at the age of 52. I think as I got older, it took me longer and longer to recover and I had less tolerance to them. After lots of supposed treatments - Sumatriptan etc. I stumbled over a blog of an old fighter pilot who after years cured himself with a small cocktail of 4 vitamins / minerals. In desperation I tried his recommendation. This was 2 years and 4 months ago (who is counting) and been cluster free ever since! The cocktail is simply daily supplements of Magnesium, Vitamin D, Selenium & Zinc. Taken daily after your last cluster (won't do much if you are in a cluster - nothing does!). You having nothing to lose trying this and I would like to hear of your success. I don't know the science behind this, but, I do know that, for me, it worked!

  • Hi , I read this previously . What sort of doses were the supplements ?

    It's encouraging to hear that you have made a good recovery.

    GJ

  • Magnesium = 375mg, Vitamin D = 1000iu, Zinc = 15mg, Selenium = 200 ug ... daily. Try it for at least six weeks and let me know if it helps. I take them daily and have done so for over 2 (CH free) years.

  • Thanks for this. I'll let you know how I get on.

  • Hi , I have the vitamins but can I take them with prescription medication, is it safe ?

    Cheers GJ

  • There are no harmful side effects with these vitamins. I would doubt they were contra-indicated with your medication. If you are concerned... contact your GP and check.

  • Thanks for this . I was concerned that there may be an interaction. Cheers GJ

  • Think you've got some excellent insights there. I suffer with ch .. maybe get two cycles a year . Employers should be sympathetic . Vit d regime has worked for me . Verapamil works . Definitely get oxygen . Cluster headache support group is excellent on fb .All the best

  • Thanks for this

  • You poor thing. CH is the worst headache. Was it you doctor who diagnosed you as it's very difficult to make the correct diagnosis. Insist that he refers you to a headache specialist. If it is CH ask to be put on the Gammacore trial. I was diagnosed with Hemicrania Continua, similar to CH but not as bad so I'm told. The Gammacore has helped me and is for CH and HC ..good luck

  • Hi, it was my neurologist diagnosed me. I've only just started my mess so I really hope that it will settle. I've heard great reports about oxygen so might make Enquiries.

    Hope your treatment is helping.

    GJ

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