Cluster headaches

[Nicosue]

My daughter is getting what the dr thinks maybe cluster headaches, she is really poorly has anyone else suffered and what medication helped

[artyone]

My friend is a priest he has had them for a LNG time. He seems to think its seasonal. He also takes vit ins he seems to think help. He sees doc in London

[Dogwhisperer]

Hi,

My daughter had severe headachs which were migraine. They became almost daily and so severe that the hospital ordered a head MRI. Thankfully the MRI was clear but the neurologist stopped all

Her medication as he said it could actually be medication overuse. I was dubious of this idea as she was taking anti depressants and an aid for sleeping as well as migraine tablets.

The stopping if the depression meds was a big mistake and should never be done that way, gradual is the ONLY way to stop those! But I have to say, the headaches are far less frequent. She still gets migraines but isn't as sick with them as before.

I'd say look into any other medications being taken. Humidity is apparently also a factor for cluster headaches.

Hope your daughter gets some relief from them. Good luck

[Littlefruitbat]

My husband suffers from cluster migraines and the Dr has put him on Propanolol, which is a beta blocker. It has really helped him, he gets far fewer headaches now and when he does get one he takes Sumatriptan which will usually clear it completely. Hope this helps, I know how miserable this condition can be from watching my poor hubby suffer.

[Smiler53]

Hi Nicosue, I suffered from cluster/migraine headaches from my teens until my early 50's. Out of 31 days I would have 15 days of migraine and the days in between were a bit wishy washy. I had a very good doctor and we tried all sorts of different drug combinations. A lot of my migraines were so painful that I thought I was going to die!! Plus sickness + upset tummy at times, I was totally wrung out afterwards. I was sent up to a neurologist is London who sent me for a scan which involved putting some sort of low level nuclear stuff into my blood stream, so that they could look at how my blood flowed through my brain at the time of the scan. Funnily enough I had a migraine at the time which they thought was great!!!! All okay though, which was good. I also had to do cold turkey off pain killers which I took everyday. As you tend to say "I'll take a couple just in case one is coming" lots of people do it. But it doesn't help and can make your headache worse. I was shocked how it made me feel doing cold turkey!

I also recorded my migraines on a chart I made up which helped the doctor. It was based on a chart I kept when trying for a baby. I put 31 days at the top of the graph (days in a month) then down the side what month it was followed by what the date was. Every time I had a migraine I would put an x in the box for every day it lasted. Also marked down when my period started and ended. When it started I would go down to the next line and start again. I kept this going for many many years which helped when seeing various doctors over the years.

I had a combination of a beta blocker in the morning and amitriptlyne at night. The nigh time one was to help my muscles relax in my neck and helped me sleep. But it was a battle, in the end my lovely doctor put me on Imigraine injections. These were brilliant as they went straight into the bloodstream and whizzed round up to the head. I have to admit I was very scared to do it at first, but when you are in so much pain you just do it (I used to swear for the count of ten!!) They do sting somewhat and the injection site can be a little bit sore, but believe me it was worth the stinging count of 10 to get relief after about 30-40 mins and a little sleep. It does come in a nose spray I believe and tablets which you can now buy over the counter (tablets). Though I don't know how they work. I am now 60 and don't often have them these days I'm glad to say since going through the menopause. My charts showed that most of them were hormonal - with my periods and before. The air pressure also sparks off bad heads too (which I and many fellow suffers get)

I hope your daughter gets relief very soon.

Best wishes

Smiler53

[beauty96]

No medication helped my husband apart from a spell in hospital and oxygen. Sorry but it is now thought to be BP trouble though not yet proven

[LDupree]

I had cluster headaches for years and took pain medication which helped cut the pain but did not get rid of the headaches. Then my son was advised to go to a chiropractor, and his chiropractor asked how I was--I was enduring a lot of pain from my cluster headache at the time, and he adjusted the top 2 vertebrate in my neck and my headache went away shortly thereafter. Since then, I have not suffered from cluster headaches.

[jell]

awful. feel so much for her. The pain is worse than anything experienced. Nothing works. I had the misfortune to have one after an op in hospital so was on oxygen and serious meds but didn't touch it. In fact i was so ill i couldn't move and all they wanted to do was get me out! I was stuck there for 2 extra days simply because the pain was too much to move - was stuck out in corridor in end. humiliated. The constant pain gets so unbearable just have to rock on the floor. can't even cry, so bad, just want to die to get out of pain. And when it's over 2 or 3 days later, like having a new head on my shoulders!

Whenever do the' worst ever' pain chart for RD, i also use that pain as a 10 therefore my chart never shows a high mark even though in agony.

Can never understand why someone says they have a migraine yet are at work or driving a car. Wish it were as simple as lying quietly in a darkened room!

This is why I try never to take painkillers for RD pain because always scared might start getting rebound headaches.

I swear everytime i have one that I lose a little more of my memory!

[jell]

just thought - often get sickness with it BUT cannot get the anti sickness motilium suppositories anymore. Doctor can only prescribe tablets which are no good because as soon as I put in my mouth, sick it back up.

Surely you'd think they'd have other suppository meds? used to help with the queasiness of the methotrexate too

[nomoreheels]

Missed your question sorry nicosue, late replying. Can't help really with cluster headaches but I've been researching cervicogenic headaches & maybe searching on Healthunlocked National Migraine Centre would be helpful to you? Hope so as I do know they can be very debilitating.

[Hidden]

So sorry your daughter has been getting these.

Actually, I'm surprised at the amount of people on here suffering cluster headaches, it's really quite rare.

When my best friend was diagnosed with this I looked it up and it confirmed how terrible these headaches are. People suffering from them say its much worse than giving birth a couple of times a day for several weeks and most doctors say its much more painful than severe migraine (which they say can come in clusters but aren't true "cluster headaches"). I suffer from severe migraine and the bad pain causes me to vomit for around 3-5 days but this sounds simply excruciating with ice-pick pain thru one eye making half your head feel like it was going to explode. No wonder many are suicidal.

In answer to your question, the only thing that works for my friend is a short course of high dose steroids or a local anesthetic infusion of Lidocaine at the hospital. Sumatriptan didn't work for her but they say it aborts the cluster headaches for about 95% of patients.

Good luck with it, I hope you find a drug that works well for your daughter.