Hi everyone

I'm Jen, 27 (for another couple of weeks) and I live in Jersey in the Channel Islands.

I've been suffering with exrutiating headaches for about ten years. Up until February I had put it down to dental problems (after having several doctors tell me there was nothing wrong with my head).

In February I was rushed to hospital with a suspected brain haemorrhage after I was left unable to see or talk (apart from screaming in pain) during sex. A CT scan and lumbar puncture showed no sign of a bleed, and the neurologist put it down to "benign coital migraine".

I was put on Propranolol, 160mg per day. There was no improvement in the now ever present headache, and after 3 weeks of horrendous nightmares and hallucinations, I was taken off the beta blockers and put on Amitriptalyne. To start with I was on 10mg at night. Still no improvement so it was upped to 20mg, then 40mg. I am now on 75mg. I also take tramadol and naratriptan.

In the meantime I was still getting exrutiating headaches that had me rolling around on the floor, screaming, crying and lashing out at things. Went back to the doc, he referred me back to the neurologist who diagnosed chronic migraine and constant tension headache.

Things really hit a low last Wedneaday afternoon. I had another of the bone crushing headaches at work. I was sent home early, I took my night time dosage of amitriptalyne, my tramadol and my naratriptan at 6pm. An hour later I was still in total agony, so I took another dose of all three. By 10pm there was no improvement at all. So I took another dose. I knew full well that I was overdosing but I didn't care. I'd have done absolutely anything for the pain to stop.

I told my boyfriend what was happening and his response was useless... "go to bed and try to sleep". If I could have sat still long enough to get anywhere near sleepy I would have. Did he seriously think I was pacing up and down for the fun of it. He got in from work at just after 1am. I was sitting on the sofa banging my forehead on the coffee table. Again he told me to go to bed and said it might be a good idea to go to the doctor again. I disappeared to the bathroom where I carried on banging my head against the sink. I thought maybe if I made somewhere else hurt then I'd forget about the pain in my face.

I went back to my gp on Thursday morning. As soon as I described what had happened he told me I was showing all the signs of a cluster headache. He told me a bit about it, referred me to the neurologist again (appointment is 14th September) and gave me Zolpidem (10mg) to try and help me sleep and get rid of the tension headache. He told me to google cluster headaches before my next neurology appointment so that I've got a decent idea of what the neurologist will say.

Reading other peoples experiences and more importantly, reading about the symptoms, has made me realise that everything I've gone through in the last ten years is down to the thing you call The Beast.

I think I'm a bit more prepared now. I know that no amount of tramadol or amitriptalyne is going to lessen the attack once it's started. I'm very interested in the oxygen treatment and I'll be asking the neurologist about it at my appointment.

I haven't been able to figure out what type of cluster headache I have. This current period began in February, is still going on and I'm getting atleast 3 "minor" attacks (lasting about 15 minutes) a day, and about 5 major ones (lasting between 3 and 8 hours) per week. Before this period, my last attack was in November, but as I had always put it down to dental pain I never kept a record of when it was happening.

Anyway, that's me. Just want to thank the genius who built this site, and the people who have turned it into a community, for finally giving me an insight into what's going on.

Jen

Hi Jen - sorry you had a reason to come looking here, but you've found the right place. We know just what you're experiencing, either as we get CHs or people who support people with CHs.

It sounds a lot like this is what you've got, but you'll find that your neurologist is likely to get a few tests done, probably an MRI or CT just to rule out a few other things.

You'll find that pain killers do little, other than hardly scratching the surface, with narcotics just giving you the side effects or knocking you out. Be careful when you come off the tramadol if you've been taking it a while as it can result in nasty withdrawal symptoms, which can normally be avoided if you come off it gradually, so ask your doctor about this first.

You'll get used to people suggesting you take an asprin or similar. People mean well but they just don't understand what we're going through.

Whilst you're waiting, try the energy drink trick. Just as you feel one comming on, drink one quickly and it can help cut down the duration and intensity. Look for anything, like Red Bull, with taurine and caffeine.

See if your GP will give you oxyygen whilst you're waiting for the neuro appointment too.

Also keep reading and reading. You'll learn a lot so that when you see the neuro or your GP you'll be a lot more clued up. And ask questions here, people will be able to help with answers or suggestions.

Hi Jen,

So glad you found this place - it's a godsend!!  I agree with the 02 thing - don't take no for an answer - it works!!!

Just one other thing you might want to try if you're getting hit during the day - vigorous exercise.  I tend to only get night time hits (so rely on 02) but often suffer from 'shadows' minor headaches during the day when in cycle and find that exercise can lessen the intensity, caffine helps too.

Good luck with the neuro - it's a long time to wait tho' mmmm.  I'd be asking my GP about verapamil or 02 or imigran nasal sprays or SOMETHING to get you through.

Wishin you all the best,

Kate

Thanks for the replies - it's nice to know that I'm not losing the plot (mostly hehe).

Had two small-ish attacks so far today. Not strong enough to have me on my knees but noticeable enough to annoy me. I'm hoping they're not a precursor to a big one.

The last few weeks have been really rough - inbetween the attacks I've had constant headaches (which I now think could be shadows), and have been very short tempered. I've had very little tolerance for things when normally I'm very laid back, and it has caused a bit of friction in my relationship with the other half when his response to me telling him I was feeling rough, or that my head was killing me etc... was ''take your painkillers'', ''drop the attitude'' or something similar.

I showed him this site earlier, and in particular the ''letter to employers...'' (also posted it on my facebook profile). I was hoping he might understand a bit more or at least gain an insight into why I haven't been too brilliant lately. He got about halfway down the letter and told me that he didn't think my problem is CH (he was at work when I had the big one on Wednesday so didn't see me banging my head against the table or sink), but further reading, and showing him the KIP scale and a few other things have shown him that it IS my problem. Hopefully he'll be a bit more understanding in future.

I'm going to go back to my doc this week to find out about oxygen - my next neurologist appointment isn't until 14th September and with the way my head is at the moment, I don't think I could handle another full blown attack before then.

Thanks for the warm welcome 

Jen

Hello Jen

When you are trying to describe your pain to someone ,I find this one works quite well .

Ask if they have ever had an ice cream headache (most people have ) then tell them your pain is very similar to that only at least 8 times worse and lasting anything from 1/2 to 3 hours and that it can happen several times a day for weeks on end . Most people will get a glimmer of understanding from that because ice cream headache is centered in the same nerve set that we experience ch in so the pain type is similar. Might just help???? may be ...

good luck and God bless

Nigel

Once again thanks for the replies

I'm seeing my G.P tomorrow and I'm going in armed to the hilt with things from this site (o2, traits etc...).

Still not having any good days at the moment. I'm not sure if its shadows or mini hits, but the whole of today has been around 3/4 kip scale, with an average break of 15 minutes and a maximum break of 40 minutes earlier this afternoon. At the moment it's definitely a constant 3, with a few stabs every now and again in my left jaw. Hopefully not the sign of an impending biggie.

My doc gave me the Zolpidem in addition to the Amitriptalyne to help me sleep (Amitriptalyne makes me slightly dozy, not enough to sleep though). Between Wednesday and Saturday it worked perfectly - went to sleep quickly and didn't wake up until morning. However, I took my dosage as normal last night, got off to sleep fairly quick and was woken up at 3.45 by a mega hit - on waking I'd put it at a 7, went up to 8/9 then subsided enough by 6.30 to get back to sleep. Slept through till 2pm today.

Been trying to encourage the other half to read a bit more into all this too, I don't know whether it's just confusing him or what, but he still doesn't seem to understand (saying that, neither do I!!).

Anyway... Hope you're all well (considering!)

Jen

Right seeing my doc in an hour, got a list of things I want to talk to him about. Hopefully he'll be open to the suggestions (he's not a bad bloke so fingers crossed).

Right been and done. He's all for trying oxygen - but he's not allowed to prescribe it. Over here, you can only get it through a hospital clinic, so I have to wait until I see my neurologist.

He has given me the Imigran injections though - 6mg doses in pre-filled cartridges. He's given me 2 to try out, if they work/ I get on fine with them then he's happy to keep prescribing it. The pharmacy was a bloody nightmare though - the one in the medical centre only stock the refills, so I went to another one who only gave me the refills. Didn't realise until I got home that the injector pen and case were missing. Went back, she tried telling me that the prescription only said ''injection refill'' when the thing actually said ''injection kit AND refill''  . Thought these people were supposed to be smart?? Hehe!

Today hasn't been too bad. Got a 'normal' headache at the mo and had a couple of grumbles earlier but nothing major and thankfully I didn't get woken up last night.

Well now Jersey Jen, welcome to our club.  I am a little late with that, but I just read your stuff and felt compelled to say hello and offer some suggestions. 

Bring your dude to the supporters section of this site.  I will guarentee you that we can get you to manage your pain within the next couple of cycles.  So the hell you are living now, should be the last hell you have to go through.  It would happen quicker if you had some help to assemble your arsenal and read the internet.  I am guessing you don't have a lot of free time right now to makes trips to the pharmacy and the grocery store. 

OK I'll back off your man because I know you are in pain and need to deal with other stuff.

If I were you I would:
Elevate the caffeine levels throughout the day.  Drink coffee in the morning, redbull at the first hint of more pain.  Keep it up until the late afternoon so you can sleep well.  I also use caffeine tablets sometimes, 200mg.  Caffeine is so good for attacks and shadows unless it has chewed up your stomach or you're sensitive to it.

Melatonin at night just before bed.  Melatonin threads are on this site.  Find them and try it. 

Kilowatts cocktail involves melatonin, kudzu and different herbs to use.  People have had good success with these.

Some people like the hot showers, some the cold.  I need extreme cold during my cycle.  Car with massive air conditioning or head in the freezer feels really good.  Others use hot pads etc.  Try each today and see if it helps.

Some people can break the attacks with vigorous excercise.  For me it induces the attack if in my cycle.  Worth a try either way.

Go to our sister site at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or and check out the alternative meds.  Not legal but more effective than what your doctor will give you.  No side effects.  Read the reports from chronics and episodics that used to be just like you.  Video at  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

In the US we can get welders oxygen and acquire regulators and masks on the web.  It's what I would do if I wanted to get oxygen.  If you have to wait or can't get it, go that route.

Some of the above things won't stop your cycle but will bring the attacks from long, big kip'ers (8-10) to a few notches below so life could be bearable again.  Some tricks can stop individual attacks and give you a nights sleep or pain free day etc.

So get on board the cluster-train, research and get the arsenal ready because you ma'am, are ready to take back control of your life!  A lot of us started like you years/decades ago.  We have figured out how to manage the pain down to just a bother, not a disaster.  It takes work and I know you are up for it.

Good luck!

--Shaggy