Can anyone please tell me whether there are any proven links between ms and cluster headache?
All I know is that MSers are much more likely to suffer from migraine and cluster headaches than the non-MS population. A quick google told me that cluster headaches are related to the trigeminal nerve, which does rather point towards a link with MS, but I don’t know if there is any definite evidence of this and I would think that most people who get cluster headaches don’t have MS.
Karen x
Hughes Syndrome should be an automatic test when MS is suspected but I have my doubts and it seems an individual choice of a Neurologist.
To save possible years of being treated for the wrong complaint I suggest you get your GP to arrange a simple blood test for APS Antibodies.
See http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/736
Good luck
George
Thanks George
I appreciate your response. I’ve checked the links and I’d not heard of Hughes Syndrome before but I’m afraid it doesn’t seem a very good match for my condition. I’ll keep it in mind though.
Neil
It has been a few years since this thread opened but can you give an update on your condition? My husband has yearly cluster headaches, and is now probably going to be diagnosed with MS. All the signs are there. I have a very hard time believing these 2 rare conditions arent related.
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Hi
I know you’d already noted that it was a bit old but you’ve perhaps not seen that the originator of this post hasn’t posted anything on this forum apart from this one thread in 2012. So you’re unlikely to get a reply.
You might get more answers by starting a new thread altogether as there could be other people who have MS and cluster headaches.
Sue
My son has suffered yearly cluster headaches for last 8 yrs. He was diagnosed with Ms last year after problems effecting his walking. I did ask his neurologist if there was a connection, and he said the clusters could have been ms replapses but didn’t know for sure. When he was diagnosed with Ch, they only did a CT scan and not MRI scan (CT scans don’t show up MS legions, only MRI scans do, apparently) so I am now wondering did his Ms start years ago with the start of the clusters, but without any MRI scans done at the time we will never know.
I had a spell last year when my headaches were ridiculous and my GP felt it was overuse of analgesia ( I wasn’t convinced) but he was very helpful and did prescribe me lots of lovely medication to help with sleeping if they were waking me at night. They lasted for ages and then just went. I am sure it was MS related.
My best friend has had a recent diagnosis and had a very similar scenario after xmas this year and hers have gone too. She also felt like they were MS related.
I suppose ultimately it doesn’t really matter. It is about treatment so that you don’t feel so rubbish living with a constant headache.
It has been so long since I posted that original request for comments that I confess I’d forgotten that I’d done it (Hi Ssssue!). When I first saw these recent responses in my inbox, I didn’t realise that it was my first post that had started the thread off. I’m still here though and it’s interesting to read the recent posts. So … here’s an update:
After 5 years since that first post and nothing very conclusive to link MS and cluster headache, I’m still none the wiser about that specific issue (although thanks to those of you have responded). I’ve been very fortunate that my MS has not developed to the point that it has become anything other than the very occasional inconvenience. I’m just celebrating (?) 20 years since my diagnosis and at the age of 62 I still lead a full and active life.
But I still get bouts of cluster headache. They are usually about 3 years apart and I guess I’m probably due another one some time quite soon. I have no way of describing the pain other than to say that it is truly, I mean truly, hideous.
It took three episodes before I found out what they were. After that, I was fortunate to have a consultation with a locum at my GP practice who recognised the symptoms and told me what the proble was. I’d not heard of cluster headache until then. I was put onto Verapamil in increasing doses of up to 4 per day, with Naproxen and Dihydrocodeine for pain-killing, neither of which worked fast enough to be of much use. Typically 2, 3 or 4 attacks daily (almost all of them waking me in the night, sometimes just an hour apart) and I’d get up, get dressed and walk for 45 minutes in agony, often on the streets, holding my head, nose and eyes streaming, until it was over for an hour or two. I had a circuit around my local area and I’m surprised I was never picked up for my weird behaviour.
But the last but one attack coincided with my GP prescribing oxygen treatment. That completely revolutionised the control of my condition. Last time, I knew as soon as they started again to get straight onto my GP. The oxygen kills the pain in minutes. Two cylinders are delivered so that there’s a spare available when the first one runs out and needs replacing. As I understand it, a company in each region has the agency for supplying oxygen specifically for cluster headache. In my area it’s British Oxygen and (somewhere) I have the contact details for when I need them again.
Although I’m still working full time and away from home during the day, the attacks are almost always at night, so I can slip into the spare room, put on the mask and start inhaling oxygen. I know that when the next bout starts I’ll have 2 or 3 ghastly nights but as soon as I have the oxygen again, I’ll be able to manage it … unless I happen to be away on holiday (that did happen once and was awful).
Still nothing more to add re possible links between MS and cluster headache but I have the comfort of knowing that there’s a way of coping with the headaches. So if you’re reading this and haven’t come across it, speak to your GP about oxygen and get everything set up and ready for your next bout.
By the way: I learned very early that alcohol is completely out of the question during a bout. But you’ll almost certainly know that! Good luck with both conditions.
Neil
I have MS I thought I’d add my response in case it’s of use to anyone. I suffered sharp/excruciating stabbing head pains when I was first diagnosed and cluster headache was one thing mentioned by my neuro, however they only lasted 30 seconds at a time to start with. At first they were a sharp stabbing pain (5 or 6 a day) to becoming more intense and frequent (up to around 30) and having other side affects at the same time which included spasms affecting just one side of my body (unable to walk at the time of the attack) and also affecting my speech which became completely incoherent for up to 15 minutes after the stabbing pain had gone. I was admitted to hospital and had an MRI and diagnosed with RRMS. My previous relapse had been just 3 months previous was Optic Neuritis and it was discussed it could be a CIS (clininal isolated symptom) at the time. So due to the progression on my MRI I was diagnosed with RRMS. I hope if anyone reads this with this rarer symptom of MS (my neuro had never seen it before), it might help. I still get the head pains every now and then, stress doesnt help, but never as severe since that first attack, where I was hospitalised for 2 weeks. IV steroids was my treatment at the time & also gabapentin I think (it was 12 years ago). Glad you are keeping well Neil. Sharon x
Hi Neil
Sorry for making the assumption that you wouldn’t reply.
It’s great that you’ve managed to get the oxygen finally, you clearly had been through hell before getting the right solution.
And also excellent news that your MS has not massively impacted on your life.
All the best
Sue
Thanks Sue. I’ve been very fortunate. At one point, several years after my MS diagnosis and in a consultation with a neurologist about my (as yet to be diagnosed) cluster headache symptoms, I asked whether I might be part of a group of people whose MS would not have been diagnosed in pre-MRI days. He told me that on the basis of the results of the other tests they’d done at the same time, he would have been able to confirm MS. So I count myself very lucky indeed to have had so few symptoms. And I’m afraid my attention to MS Soc information has tended to slip as the years have passed, so it was perfectly reasonable to suggest that I would not respond to the recent flurry of posts in an old thread. I appreciate your comment and hope you’re coping if you’ve not been so lucky.
Best wishes
Neil
Thanks Sharon. You’re all very kind and whilst nobody would wish MS or cluster headache on anyone, it’s a comfort to have access to helpful comments and suggestions via a forum like this. I hope your condition is under control now.
Best wishes
Neil
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Hiya Neil,
You ever thought about HYPERBARIC OXYGEN treatment; Hyperbaric oxygen therapy | MS Trust it may stop the headaches happening.
George