Hello everyone, so glad I have found this place with loads of advice.
One thing I have realised through reading posts on here is that my CH's are very minor compared to the pain others are suffering on here and it has put things into proportion for me.
A bit about my situation now  :) I am married with 2 sons one working and one at Uni, turning the big five oh this year.
While a teenager I started getting a "Bad headache" Pain in right temple and eye for about a day, roughly once a year, this went on till nearly 3 years ago when my husband was taken ill and I started getting one or two every month. My Dr diagnosed Migraines and gave me migraleve which after taking the pills and having an hours or two's sleep got rid of it.
This went on till about October this year when I woke up at 3 in the morning feeling as if someone was stabbing me in the right eye and pounding on my head. My right shoulder was rock hard, so were the neck muscles and both were very painful.  I took some Migraleve and put an ice pack on it.  It started to ease off during the day but didn't go, two days later it was still there and although I could function and do things I was in pain. I seem to find it easier to carry on than give in and go to bed.  I got an emergency appointment at my Dr's and was given Imigran which thankfully got rid of it.
Last week it happened again waking me at 5 and lasting for nearly 3 days, massage using a spiky ball on my shoulder and neck give temporary relief.  This time I saw my regular Dr who asked about the symptoms took my blood pressure and went Ahhhh. It was apparently quite high.  She wanted to put me on Betta blockers but because of my asthma and Christmas she wouldn't. She gave 3x100mg Imigran and said I was having Cluster Headaches and she hoped this would be able to break the cycle.
I took the pill on getting home and it eased off but didn't go. It did ease off and now is about as painful as a "Normal headache".  It just wont got and seems to be like a wave going up and down but thankfully not really painful just annoying painful  ;D
Have been taking blood pressure regularly and trying to work out if there is a trigger to them. I know stress is part of it as things have certainly got worse since my hubby was taken ill.
I have looked around the forum and have a few questions that I hope you can help me with.

What are shadow headaches?

When is the best time to take my Imigran, as soon as I feel a headache start. Sometimes they don't get any worse are just there, and on a grade of 0 - 10 are about a 2-3. Or do I take them when the pick axe in the eye starts?

I have read about RedBull helping, does Caffeine help. I do drink a lot of tea but its all Caffeine free.

I know in the scheme of things they aren't debilitating but I would rather they went and didn't get any worse.

Thanks in advance for your help.
Sharon

You're description is not a "classic" CH description, but certainly has enough characteristics to where a doctor would start looking in that direction. CH typically lasts 60-120 minutes, build very quickly to a peak pain, then go away as quickly. That's a VERY generic description, with more potential variables then you can shake a stick at! :)

I'm wondering if what you're describing as a constant headache is what many refer to as shadows...the achy feeling that an attack is about to start, but it never really hits. Then the "spikes" you refer to, are the actual attacks. A headache diary would be helpful for your doc's diagnosis. When your attacks start, how fast they build, how high they build, how long they stay at peak, how fast they go away, describe the type of pain, any triggers you've identified, the more detailed the better.

While you're working with your doctor at establishing a firm diagnosis and treatment program, the following may help.

Energy drinks, those containing caffiene and taurine, I prefer Sugar Free Red Bull, chugged at the first sign of an attack, helps abort or reduce for many. Caffeine by itself helps some, but the combo of caffiene and taurine seems to make a big difference. Avoid alcohol, a very common trigger for many.

Imigran Tablets are of little help to CH. The injectable form is much quicker, the imigran nasal spray helps many. Read the oxygen info tab on the left. It has all but eliminated my use of imitrex for aborting attacks. 6-8 minutes of huffing 02 and I'm pain free. A must for CH'ers!

Do you have access to a headache specialist neurologist? With a condition as complex and rare as CH, it's really your best bet at an accurate diagnosis and an efficient treatment regimen.

Good luck on the diagnostic journey, it can be the toughest part. Keep us posted!

Joe

Suggest you look at your excellent support group:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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You are at an "awkward" age when developing Cluster is not rare but could signal other medical conditions which can be significant. I'd talk to your primary care doc about a referral to a headache spcialist/clinic for a comprehensive work-up. At this point I would not assume the Dx of Cluster is final/correct.

Even if Imigran kills an attack, this is not a confirmation that you have Cluster.

You may find it useful to do some basic learning about Cluster, in any case, so that you have tools/concepts to guide discussions with any doctor you see.
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

I would echo Bob.

Also, please take the "cluster quiz" on the left side of your screen.  It doesn't diagnose (we don't do that) but it will give you some strong indicators.

Read "cluster traits" also on the left and the "medical info" in the same location.  That gives you some info for understanding you can use when talking with your Dr.

All the best,
Jerry

Guiseppi wrote on Dec 29^th, 2010 at 8:34am:

Imigran Tablets are of little help to CH. The injectable form is much quicker, the imigran nasal spray helps many.

I agree that the injectable and nasal spray work faster, but I would disagree that the tablets are of little help. Many times in the past I have taken one of the 100mg tabs at onset, then started huffing O2. The oxygen will abort in anywhere from 5-15 minutes, and the tab is just starting to kick in. The tab will prevent a recurrence for several hours, whereas I would often be getting my ass kicked half an hour later with just the O2.

And in those rare circumstances where O2 is not available, I'll take the tablet over nothing at all in a New York minute.

There are some anecdotal indications that Red Bull, Monster, 5 Hour etc help with other kinds of headaches as well. It's apparently a combination of the taurine and caffeine, and I've read that the taurine (1000mgs) supercharges (effectively) the caffeine (85mgs). Some have had good luck with just caffeine alone. Caffeine has been an intervention for migraines for a long time. And clusters, in the form of cafergot, a combo of caffeine and ergotamine. Try one...chugged at the first hint of a hit. Same with any abortive...the earlier you hit the onset of a headache with O2, energy drinks, imigran, whatever, the better. And do please take the advice given above. Don't assume your neuro knows you, or CHs, better than you know you or your pain. God bless! lance

Taurine is a calcium channel antagonist (just like verapamil) and caffeine is a vasoconstrictor, so the combination is exactly what we need to help with CHs.

Thanks everyone for your replies they are really appreciated and have taken all your info/suggestions onboard. Couldnt get on before, hubby was putting a new hard drive in my laptop and I was off line for a while.

Yours was the first website I found when looking for some good info. Will have a look at the Uk one, thanks for the link to it.

At the moment I havent got access to a headache specialist neurologist, but then its only the start of the journey and in the UK we have the NHS which isnt always known for its speed  :)

From all your information it dose sound like I have only had a few attacks but a lot of shadows, which have lasted a long time.. is that "within the norm"?

So far I have just kept a note of when the headache started and if I needed to take a pill and where the pain was situated.  The shadows do seem to last rather a long time.

Have a couple of tins of redbull in the fridge and will let you know if they work.

I took the quiz and although about 2/3rds of the questions I answered pointed to CH's the other ones didnt.  But then my Doc always has said that when I am ill its never within the "norm"  :D She has said I am an oddity ;D

My Doc has ruled out a couple of things, and am off to see her next week to get blood pressure checked after taking readings for a week.

Thanks for all your advice, its nice to know others are in the same boat as me even if my symptoms are really mild compared to you all on here.

I wish you all a pain free New Year, x

You will find we're all just a bit "odd"!! ;D  You are going about this in a very logical and orderly fashion. Continue to educate yourself and work with your doctor, wishing you speed on your diagnostic journey!

Joe

Thanks Joe  :)
Hubby would definatly agree that I am a bit "odd" ;D

Hi, a couple quick points. We are all different (particularly with respect to CH), so don't let anyone tell you you don't fit the CH profile (of course there is a definite CH set of symptoms). I for example, have CH, but also have some other headache types. I was never a "headache person", but had 3 concussions in succession about 5 years ago. The shadows are odd, as you will see. I get my CH from Autumn into late winter, and because I spent my Autumn in a warmer part of the US this year for work, it started much later. I get shadows all summer, so watch your trigger points. For example, I found mine are: dehydration, shellfish, hard liquor, wine (for some reason, beer doesn't bother me, though I don't drink more than 1 or 2 at a time), excessively loud noises (only high pitched). And my shadows may be for a few hours, or one time last summer had a dehydration experience that put me into a "shadow" that lasted a week. Good luck, I can tell you that you came to the right the place, these folks are great, and maybe docs help a lot, but nothing beats the experience of fellow sufferers.

Thanks Mike, I kinda wish I had normal symptoms, life would  be so much easier... but I kinda dont do Illnesses normal  ;D, but am learning through reading on here that people vary so much.
Though I do find I get very thirsty when I have a "headache", glad I found "here"  :)

That's not a bad thing either. I tend to "drown" my CH with water. I found the extra fluids help a little. Not always. I'm not sure if it's the fluid, the extra oxygen in the water, or just my mental state, but water seems to help me. Anything that doesn't involve drugs or other harmful substances with side effects is worth a try, I suppose. That's wh I was happy to try Monster/Red Bull. I even did accupuncture, which also worked, even though only for a short time (my friend is an accupuncturist, so he "tunes me up" whenever he visits).

Thanks, I have had a headache for the past 5 ish days but as I am so thirsty (have had that checked out) it hasnt got any worse. Not that I have got the hang of shadows yet.. but am reading and learning  :)

Happy New year to everyone  :)
Some one, not on here, has suggested that I might not have Cluster Headaches but Hemicrania Continua.
Any idea if that could be correct?

Gizzy wrote on Jan 1^st, 2011 at 1:36pm:

Happy New year to everyone  :) Some one, not on here, has suggested that I might not have Cluster Headaches but Hemicrania Continua. Any idea if that could be correct?

Happy New Year to you too

This is where you need to see a neurologist who specializes in headaches.

From looking at the symptoms of HC, there seems to be a good overlap with CH and ice pick headaches, however you need someone who is an expert in this area.

Thanks Mike  :)