Sonic'

Anyone else suffer from them?

I have for a few years now, and have just had to get another prescription of vorapimil as I have had these before and they do help

If anyone else suffers from them, is there anything you do that helps, last nights attack was excruiating and almost unbearable, and unfortunatly nothing will make it go away apart from time

Lisawrx

iTrader: (1)

I'm not sure about cluster headaches, but I suffer headaches everyday, have done for years now. They vary in how severe they are from just there in the background to unbelievably painful. As scans etc. years ago showed no cause the docs now just say they must be tension headaches. I use magnetic bracelets/necklaces to try and help. Not really sure they work, but after all this time anything is worth a try.

Had accupuncture once (I looked like the gut off Hellraiser), didn't help me but it was only one session, and some treatments obviously don't work for everyone, might be worth a thought.

Failing that, I don't know whether you have one in your area, but some places have pain clinics, it may be worth a trip to one to see if they can offer any others suggestions best suited to you.

Sorry I couldn't really help, but hope you get sorted.

mw2655

hi you might want to ask your gp to prescribe sub-cut sumatriptan, given like insulin, and works quite well to actually treat the headache.

verapamil is to prevent.

cheers matt

mw2655

see here...

Cluster Headaches

Sonic'

Cheers Lisa

What happens with me is that the attack always happens about an hour after going to bed (I believe that sleep can be a trigger for them) and last between 20 minutes and 45 minutes, with gradual intensity until they suddenly just stop

Its always the right side of my head on my temple with the vein pulsing quite severly, if I touch the vein it sends shooting pains either behind my eye or up into my head (on the surface where the vein is)

I have read that there is no cure and no one really knows what causes them, other than if you get them you have them for life, and also that they might only surface for a few weeks then subside for a year or more

I had them for around 7 months a few years ago, then they stopped, then they came back after 12 months, but they only lasted around 2 months and havent had any at all until this last month or so

In the UK, the Pain is said to be worse than childbirth (statistics from mothers who suffer from them) or if your american (who do tend to glorify things a bit more than we do) the pain is likened to that (in intensity anyway) of having a limb amputated without any aneasthetic

They (the yanks) have a sliding scale of intensity too, which ranges from 1-10, 1 being relatively mild, and 10 being suicidal, at the worst point I had them previously I would say that I hit about 9 on that scale

At the moment (even with the verapimil) im probably on about 7-8 on the scale, but at the moment its not 6 nights a week (like previously) its about 2 or 3 nights, but still pretty bad when they kick in

Oh and I cant have grapefruit or grapefruit juice under any cirmcumstances whilst on the verapimil

Sonic'

Cheers Matt

From what I can gather verapimil was prescribed to help thin the blood so if I do get them, they wont be so bad, I was also told that the dosage can be increased however I will have to have regular ECG's etc if the dose is increased due to my heart possibly slowing down too much

Ill take a look at that site too

Scoobychick

iTrader: (1)

I get cluster headaches but I've only just been diagnosed, up until recently I'd just thought that I was unlucky. I seem to get a cluster on a fairly regular basis, probably works out to be about once a month with every other month being more severe. Some of them are excrutiating and I can't do anything apart from dose myself up with a cocktail of strong painkillers and lay there groaning for a few hours

The worst headaches are usually at this severe stage for about six to eight hours, then they die down a bit. Generally I'll have a headache of varying degrees of pain for the next three to four days after.

Then the gaps between headaches will get longer until I'm down to just one or two normal ones a week.

When one of the severe headaches hits me I can't do anything, I just lay there in agony unable to move waiting for it to go away. What I'd like to be able to do is cut the top of my head off, scoop the pain out and close my head again

It's such a relief when the pain finally subsides. I haven't got any magic cure I'm afraid, nothing apart from letting it go it's course seems to help! For the milder ones I find 2 x 500mg of co-codamol and 1 x 400mg of Ibuprofen together works well for me. However I'm now working in a pharmacy so am going to be trying various concoctions of painkillers

Sonic'

Also meant to add that verapimil was the starting treatment and that there is other possible treatment available such as pure oxygen which is the quickest most effective way of subsiding the attacks but still takes about 7 minutes to work

Again tho like other treatments they are to subside the attacks not stop them from occurring

Sonic'

Cheers Scoobychick

I was told by the medical profession that taking pain killers doesnt do anything and the fact that the headaches stop after taking paracetemol etc is just coincidence

I really do know what you mean when you say about cutting the top of your head off

When I first got them I would get out of bed, pace up and down, punch the walls, kick things, bang my head etc just to try and make the pain stop, I have never felt suicidal with them, but I can understand why they say suicidal thoughts occur

HankScorpio

Mine aren't cluster but my neurologist refers me to these pages for information and they've proved very useful, maybe nothing new for you but they are informative and well written.

Cluster headache - MayoClinic.com

Scoobychick

iTrader: (1)

I try and sleep, but can't lay down properly so sort of lay there propped up and try to block the pain out by not moving. I was hypnotised once and I try to get myself back into that sort of state where I can't feel my body I know that sounds mad but you'll try anything when in that sort of pain!

Sonic'

Once I wake up, I get up and come downstairs and have a glass of water with some ibuprofen (its pyschological, as I know they dont do anything ) then I have a cigarette outside, then sit upright on the couch without moving, then go back to bed and try not to move until eventually the pain stops and I can go back to sleep

Scoobychick

iTrader: (1)

I've just been reading that stuff on cluster headaches above and I'm not so sure now that my doctor has got it right about mine The pain I get is severe, really severe but lasts for hours at that level. Then it subsides and last for 3 - 4 days at varying degrees of pain. I get these periods where I'll have headaches for about two weeks every day, all day but they come and go in severity. Mostly I wake up in the night with them. Sometimes getting up helps, always sitting up helps, sometimes death seems like the best option!

I'm not sure if these sound like cluster headaches or not now having read that guff!

Scoobychick

iTrader: (1)

The pain is always on one side of my head too, usually in the temple and behind my eye.

Sonic'

Ive just read that too from Hank

Mine is always the same side (my right) and in the temple and usually behind my eye, your Doc is probably right though

Mine have only ever occurred an hour after going to sleep, and never occurred in the day or evening, although sometimes I feel my temple starting to pulse but not enough to launch a full scale nuclear attack on the side of my head though

Scoobychick

iTrader: (1)

Do yours come on instantly? The ones I have during the day just hit me, I go from nothing to full blown pain in seconds. I feel really exhausted after one too.

The nuclear attack sounds about right

Sonic'

I assume mine come on instantly as im usually in a deep sleep when they happen and the pain wakes me up, the pain gradually gets worse over a period of about 20-45 minutes then suddenly stops, at which point im back in the land of nod, but do feel fecked the morning and day after

The pulsing of the vein in my temple (which becomes quite visible, even the pulsing can be seen) can happen and just suddenly come on in the day but never usually increases and eventually subsides

Interestingly the other link Matt posted said it is unsure why verapamil works, but the neurologist I saw said that it may work with me as it thins the blood (as it is normally used to treat high blood pressure) and reduces the pressure in my veins so hopefully should be quite so severe, and in some cases I may just sleep through the attacks

It worked (or rather helped) last time, and I have another week or so before they start to kick in and work again

ritchie21

Hi Guys,

Sorry to read about your pain - I suffer with terrible headaches and migraines and take, when I need to, tablets to help prevent them.

However, I was wondering if either of you suffer with back/neck pain? It might be worth you both visiting an osteopath/chiropractor. This is because if your spine or other joints (including pelvis, hips etc) are misaligned, that can have an enormous effect upon the type of headaches you receive. If you are misaligned, then the osteopath/chiropractor will perform some gentle manipulation which should help (they can also help free trapped nerves etc).

I had major problems a few years back - spent two hours with a chiropractor who manipulated me from top to toe and also advised me of potential allergies I may suffer from (Also found out because of the misalignment in my spine and joints, I carried half a stone more on one side than the other! )

Helped enormously with my headaches and whilst it didn't stop them completely, it did help to reduce the severity and pain.

Also recommend a painkiller called Kapake - will knock you out within 20 mins of taking it .

Hope you guys get sorted.

Sonic'

Thanks ritchie

I dont suffer from neck or back pain, I used to many many years ago suffer from back pain after a couple of trampolining accidents and then working in a job that involved lots of heavy lifting, but it isnt related to the cluster headaches though

Interestly too I have read that LSD and Magic Mushrooms are or have been used with great effect at stopping the cluster headache when they start !!

ritchie21

I'd still give it a go though Sonic - you might find that you've simply adjusted from when you had problems before.

And seriously ask your doctor about kapake - they are so so worth it!!!!

nooobyscoooby

This really is an excellent thread. I can't contribute other than to say my migraines were cured by having a small stroke - not quite what the doctor ordered I must admit.

Anyway its great ot see that even on a car site, some serious stuff is treated seriously.

Hope those of you who are suffering find ways of coping.

I will add one thing though - I used to drink lemonade [not Coke] when I took my migraine tablets at the doc's recommendation and the sugar did seem to help.

j4ckos mate

lad here at work has them, but he leads a hedonistic lifestyle,

he has injections every 24 hours when he starts with them

Paul3446

I have always suffered with frequent headaches, but I noticed a little while ago, that I never ever got them while doing night shifts. This got me thinking, as I would have thought that I was more likely to get them when tired. I then realised that the reason was, I was drinking a lot of fluids while at work all night and therefore not dehydrating!

Now if I feel a headache coming on, I just drink a few glasses of water and probably 75% of the time it disappears.

It may seem very simple, but I wonder how many people's headaches are just from being dehydrated, especially if the headache starts an hour or two after getting up, when you haven't had much to drink since the previous night?

stilover

I suffer quite a bit from headaches.

Not every day but there are occasions when I do seam to get them most days. If I haven't eaten for a while I get a headaches.

What I do get though is Migrane's. Luckily not very often, as they knock me out for 24-48 hours, and days after bright light hurts my eyes.

Brendan Hughes

Isn't nicotine a stimulant? Seems counterproductive (but I'm sure the psychological effect overrides it!).

Just a thought.

Scoobychick

iTrader: (1)

For all you migraine sufferers that haven't seen your doctor did you know that you can buy Sumatriptan over the counter in your pharmacy? It's about £6.00 for two pills but is supposed to be very good and works by shrinking the blood vessels (or something like that! ).

Anyway I've not tried it but my pharmacist boss says it's very good

stilover

Tried a couple different ones. All they did was make me physically sick. There was no let up in the Migrane either. Or if there was is wasn't very noticable.

Sonic'

Yes you are right Brendan, the Doc did say that smoking will keep the arteries clogged up, and can contribute, and the tablets I am on keep the blood thin