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21 May, 2010 - 2:56 pm

I've had cluster headaches for 22 years. Over the past few months I've been having a dull ache in my eye which would last anything from 20mins to an hour. I've been getting several each day - as they aren't really that painfull (1-2) it's not an issue. I just keep thinking an attack is on the way but it never transpires.
Haven't been getting a great nights sleep for the past six months due to another baby‚ so I'm guessing it's not helping.
Anyone else have this??
Also I've not had a full blown cycle for almost a year and I'm getting the feeling I'm overdue as I'll have at least one cycle a year.

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22 May, 2010 - 6:55 am

Hi Frosty
Nearly missed this one.
Firstly can not believe you have been in the clutch of CH for 22 years! And you still appear sane.
As a newbie to this (only 2 years) I can not imagine what it must be like waiting for a major attack as you are. I really think I am more of a chronic "sufferer" with acute periods; but not always major if you get my drift.
In answer to your question re dull ache in eye etc. Fortunately for me‚ my eye is not really involved--I am more forehead‚ head and now jaw. But I do experience a lot of say 2-3s between attacks and they usually are a prewarning of what is to come. Poor sleep probably not helping. I find change in sleep patterns for me are probably the best indicator of what is to come. Being on drugs which cause a bit of sleep disturbance does not help.
If worried re another cycle on the way--suggest get ready and be prepared with either your cocktail of drugs‚ water‚ O2 or whatever helps you the most.
Good luck and enjoy those babies.
Cheers Heather

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23 May, 2010 - 5:41 am

G'day Frosty (and Dusker)‚
what you're describing‚ Frosty‚ is what i've always assumed is meant by a "shadow". I know exactly what you mean- it's as if an attack is starting‚ but it doesn't ramp up. Dreadful feeling (in the true sense of the word).
I had the same "shadowy" feeling at the start of this month‚ and thought it was the start of my overdue Spring bout‚ but it didn't kick in. Not that i'm complaining‚ you understand‚ there's just this feeling of dread - like‚ get on with it‚ so it can end for another season. I hope it's not possible to talk myself into an attack

Congratulations on the family addition‚ too.

Cheers Peter.

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27 May, 2010 - 1:56 pm

Thanks for the replies.
saintpeter - I think you've hit the nail on the head with the shadow description. I totally agree with you in that sometimes you wish it'd just come so you could get it over and done with!! Nuke it with some drugs and O2!

It's sometimes good to know you're not alone with the symptoms.

Child number three is coming along nicely too

Thanks to you both.

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01 Aug, 2010 - 4:45 pm

Hi, My seven year old son has CH's. They started at the end of last year. He sometimes has a dull or mild attack and he thinks a major attack is about to start. I was unsure if this could happen and was wondering if he was pretending however I don't believe he is pretending any longer. I just seems to be the nature of the syndrome. Unfortunately the attacks are mostly severe. I wish I could help him.

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01 Aug, 2010 - 8:08 pm

I had no idea that CH hit youngsters! How do you explain this to him and how do you manage them? What treatment does his neurologist offer him?

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07 Aug, 2010 - 8:39 am

I also have all day pain, a day hasnt gone by in 3 years that i have been pain free.

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07 Aug, 2010 - 2:14 pm

that must seriously suck....

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07 Aug, 2010 - 4:51 pm

My best has been 13 consecutive days pain free this year following IV Prednisolone; other than that still average 3 headaches a day (but can peak at 6) so in my mind out of control. Consuming far too much Imigran orally, dont like the spray, haven't tried the injection. Seeing neuro shortly--again!

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03 Jan, 2011 - 6:07 pm

Hi I just searched this problem today and this cluster headache seems to be exactly what I have! I get a pain in my left eye at 7-8 o clock every morning when I wake up and it feels like someone tugging something connected to the back of my eye, it also throbs, weeps and goes red. I'm shocked that other people have the same problem and nobody has hade a positive result I feel like there's no point going to the doctors what shall I do?

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04 Jan, 2011 - 12:40 pm

Welcome Walkerboy21
There is no doubt that this is a tough illness to deal with but it CAN BE MANAGED, so heads up and take heart!!
So what should you do?
You can not manage this on your own--you can try like I did, you can hide your pain like I did, you can research it to hell like I did, but at the end of the day you will need help.
First of all you need a clear diagnosis by a doctor--and then you need to work with your doctor on managing first your pain and then the management of the headaches themselves. Now if your Doctor does not help you--find one who does! It is that simple. There are plenty of good doctors out there who are very well versed on the management of headaches generally now and even more so on cluster headaches. If they raise there eyes at the mention of cluster headaches, then move on.
Keep a diary of your headaches; how often, how long, how intense the pain, when they occur, where you are, anything that might be effecting them. Smoking, drinking, eating that day. What you have tried for the pain and any effect.
READ all the information on the left--KNOWLEDGE is power and when you do see the doctor gives you a basis of understanding when you discuss things with him/her.
Treatment:
I am only reinforcing what is on the left:
OXYGEN: the cheapest and the best and earliest treatment for CHs. Also the earliest diagnositic method for CHs. If you use oxygen and your headaches go away--you can be sure you suffer from CHs. Read the information, get the oxygen--and IT IS THAT EASY to get. Follow the simple instructions.
Oxygen will not stop the headaches from occurring but will help you manage the pain of the attack.
Medication from Doctor available as explained on the left -- I use oral imigran, some use nasal spray or by injection.
Then there is the preventative treatment method which is aimed at stopping the attacks before they start. As these headaches are very unpredictable and are "clusters" they are indeed hard to manage--but the medicos are getting better at finding stuff for us. Currently I am on Verapamil and Topomax.
I am also a great believer in using good breathing techniques during attacks--if the brain needs more oxygen, then being in some form of control rather than head butting the wall has to be a better option.
Last year was a toughy for me, there were times that I was on the edge of depression brought about by the illness, I was averaging 6 headaches a day, acute on chronic, spent many weeks in hospital, BUT, working with my neuro, worked through it and now am GREEN. My acute period ended on the 6th October--what an amazing relief. Now I rely on my medication to hold them at bay. Whilst I still get headaches they are more of a migraine and I manage them with imigran--they are not the excruciating pain of a cluster headache. I know the nerve is still pinging but the pain is manageable.
SO--negate the negativity of my August posting and see that I am GREEN and smiling; IF and WHEN my next round starts I am READY for it, I have a plan set up with my neurologist, I know what to do.
Seek help, be proactive and dont try to manage this on your own. There is definitely help out there and good treatment available.
Heather

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06 Jan, 2011 - 8:51 am

Thanks a lot Heather for the advice I'm gunna ring my gp tomorrow

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06 Jan, 2011 - 9:20 am

Good on you
I am hear waiting to hear what transpires.

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10 Jan, 2011 - 4:27 pm

Started with the gurney bending type (always rightside eye,ear, base of skull) back in 1993 and only shots could give me relief from the blindsidings. Those headaches became predictable if barely tolerable but I have only had a few pain free years to date.. Now I have daily recurring CH's multiple x a day and have recently started experiencing numbness to my left limbs, dizziness, even lost feeling completely in my leg and collapsed as if it weren't there. My blood pressure is always good and CT scans have always came back negative. I just don't know what to do anymore as I can't find the answer because what always seemed to be identifiable now seems to have morphed into something of a mystery that worries the hell out of me which as you know only worsens the cycle. I recently had outpatient surgery on my sinuses, had my vision checked and a full work-up at a GP and there seems to be no indication for the cause for these "spells".I thought perhaps someone here might know of someone or have been through something similar that could put me on the right path as I am at a loss.

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11 Jan, 2011 - 7:30 am

Welcome John
Well you certainly sound as though you have "been through the mill".
Are you seeing a neurologist for an overall picture though.
I note you have had CT scans. What about MRIs?
It sounds to me as though you need to take the next step which is to be assessed more formally by a professional.
They certainly sound more than just spells to me--I certainly would not be put off by the fact that a full work up by a GP showed no cause. I would be investigating further.
I am currently going down the track of a second opinion for a completely different medical problem--it is our right! I suggest you do the same.
Investigate yourself further; but go to the doctor with a well recorded headache record and timing etc. ie headaches when, spells when, how bad, what doing etc. Effect of medication, what medication--give them something to work with.
Let us know how you go. There is also some great information on the left of this site about managing CHs re oxygen etc. You may find helpful.
Keep in contact with us
Heather

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11 Jan, 2011 - 9:27 am

Thank-you. Have seen several neurologists but they seem to "run their course" and what was once somewhat manageable now seems to be clouded and ol Dr. Canofcorn just never seemed to get CH's in general and I am going to see the first doc that originally diagnosed me and went through the steps with care.. An mri might be in order after so long as you suggest. I will get back..

John

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