Cluster Migraines

[LupusKaren]

Anyone else suffer from Cluster Migraines. I have been blighted with these almost daily now for over a year, one of the very rare percentage who do not get just a cluster, but are plagued on a daily basis.

So debilitating, no medications have worked for me thus far, which include beta blockers, high end pain killers, the only relief I have recently been given is with Oxygen therapy andTriptan injections. MRI scans have all proved normal.

[Davros]

The best reaction to meds I had - before going onto warfarin for APS - was daily 75mg aspirin. Taking it regularly I found it worked wonderfully when none of the high end perscription meds didn't touch them.

[LupusKaren]

Thank you Davros, I have been on 75 mg of Aspirin, unfortunately both SLE/APS can be cause for migraines, as can many of the medications I am on, we have tried exclusions of meds, additions of others, to no avail. Oxygen therapy, with Sumatriptan injections work, but only if you catch them before onset, these unfortuantely usually wake me from sleep by which time it is too late, and you have to let them run their course.

[Tigerlily4]

Me too Karen - for almost 3 decades. I've tried absolutely everything over the years and the only thing that ever worked for me is diazepam. If I feel headachey and a couple of Panadol doesn't nip it in the bud, I take 5mgs of diazepam. Try to do that before you reach the vomiting stage. If things continue to deteriorate I knock myself out with another 5 or 10 mgs (depending on the severity - always take the least you think you can get by on), go to bed and sleep it off. Your head/neck may still hurt for a few days after but you'll avoid the worst and probably prevent a cluster from occurring. Problem is it's a highly-addictive drug that GPs are generally now unwilling to prescribe. You may therefore have to ask your Rheumatologist to let your GP know you should be provided with a limited amount to try. I hope it helps! If you try it let me know. x

[LupusKaren in reply to Tigerlily4]

Thank you so much Tigerlily, diazepam is something unfortunately I am highly intolerant of, and to be honest even if I were ok with it, would have serious reservations on taking on regular basis for the reasons you highlight. However, I am very fortunate to have a superb GP, and he has prescribed me Pethidine for pain, this simply knocks me out, but again I only take this, when my body is exhausted from the rigors of days of CM.

Oxygen therapy and the Sumatriptan injections do help, maybe 40% relief if caught early enough, certainly better than no relief as I was experiencing.

Snowdragon, Cluster Migraines are wholly different to normal migraines, those are bad enough, but CM are beyond vile. Zomig in form of nasal spray, I have tried, to no avail unfortunately, but thank you for mentioning them.

Next stop for me is likely another referral to a Neurologist who specialises in these type of migraines, as Botox therapy is thought to help, again, not keen, but at this point in the game, I would be willing to try anything that could help.

[Snowdragon]

I used to suffer with bd migraines,my doctor gave me Zomig a few years ago.You take them as soon as you feel one starting.Hope this helps.(they have been my saviour)

[Coppernob]

Have you tried Plaquenil (hydroxychloroquine sulphate)? Usually (or often) prescribed with Lupus, SS, APS, etc. It certainly helped control my regular migraines. Hardly get any now and when I do, I can control them either with Synflex alone (1 or 2), or if it's really bad and persistent, with Sumatriptan as well. If you're not already on Plaquenil, I would ask about it.

[Tigerlily4]

Oh, wasn't suggesting anyone take diazepam on a regular basis! I probably only have a migraine once every 8-12 weeks now and merely a sore head and neck for some days after rather than a continuing cluster. Before then I'd have a cluster at least monthly. Whether this is down to the diazepam I couldn't say but worked for me where nothing else did. Pethidine, by the way, is a much more addictive and dangerous drug than diazepam!

Worth knowing also, for those taking stomach-irritant NSAIDs, that Ranitidine is a notorious cause of migraines. However, after many years using essential oils, I've now found the lavender variety will bring one on, as can some cleaning fluids, coffee, hard cheeses (usually rennet is the problem here - soft cheeses are usually fine) and chocolate so there are potentially a multiplicity of tiggers quite apart from the tendency to them brought courtesy of lupus. Worth considering what you have eaten or been exposed to immediately before onset and trying to avoid those things in future.

[LupusKaren in reply to Tigerlily4]

No I know you wasn't TigerLily, and yes am wholly aware of Pethidine is way more potent and more addictive, but as I said, Diazapam I am intolerant too,l as in allergic reaction, Pethidine I am fine with, and have only taken this 4 times in a year, under controlled circumstances with my GP visiting me at home.

Diet and what I eat no problem, follow a very restrictive diet, no dairy, no cheeses, no nightshade vegetables, no alchohol, no caffeine, these CM for me are light triggered, I am extremely photosensitive and photophobic, maybe I should have made the latter points clear in my earlier posting.

Thanks for replying anyway.

Copper, yes been on Plaquenil for over 2 years.

[bethsuejane]

I do woder if we all should be on baby dose aspirin as reading about Hughes syndrome seems to often be the cause of these headaches and seems to prevent clots before things get too bad. I'd love to hear from a volunteer or professional if it has any reasons for not being given on a regular basis other than the slight risk of gastric bleeds that all pain killers seem to have?

[tidmusshaz]

I recently experienced cluster migraine for the first time, tho I had suffered migraine in the past these were only visual disturbances, only once having had pain. The effects of this cluster migraine was soooo severe my GP admitted me to hospital fearing I had suffered a bleed in my brain. I was sooo scared. Ive since had a couple of these tho luckily less intense than that first one.