Firstly, I would just like to say hello to everybody.

Secondly, I'd like to introduce myself. I'm Kevin and I live in the UK. I have been suffering from these headaches for the last 9 years and, as I'm guessing most of us on this board have been, have been misdiagnosed for various headache causes. I have:

1. Been told to stop taking headache tablets as they are rebound headaches that I am getting. (This was by a consultant neurologist, the git!)

2. Been told it was stress due to having a new family. My eldest is 6 and these have been going on for 9 years now...

3. Sinuses was my particular favourite as I got to lie down for a bit after I had had them drilled and drained. Which was nice... NOT!

4. Migraines, and I was to stop eating stuff which gave me them.

5. Finally, at 4 in the morning, I Googled* the symptoms and hey presto here I am.

I have to say that I read through some of the posts and the introduction page with tears in my eyes. Finally, it seems that it isn't just me sat up watching trashy films on telly because I don't want to go to bed...

No doubt I'll post again.

Best regards to you all

K

* What did we do before Google?

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE;        This is your excellent support group. They can help deal with your health care system which, by the way, gives you a legal right to be seen by any headache clinic of your choice (I understand).
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Your experience mirrors many of the messages we see from the UK. My impression is that your docs have little effective education in headache and so getting to a speciality clinic is important.

If you will send questions or need info. in specific areas re. headache, please send them. We can supply a decent reange of medical material.

This is a good overall article; see the PDF file below.




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]

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Welcome to the board, sad how many stories mimic yours, the onky thing you left out was having a  few teeth pulled because they thought it might be dental related! ;D

Educate yourself, and work at finding a decent headache specialist neuro with experience in CH. Both will help you reduce your pain level. An educated CH'er hurts a lot less. So glad you found us, welcome home!

Joe

Location now added on Profile... Will read through the article that you have posted tonight when the kids are in bed.

Thanks for the info

K

Hi Kyuudousha

Although your symptoms seem to match CH, it's vital that you get a firm diagnosis of CH as there are many, many headache types with some very similar to CH, so until you've got that diagnosis you may not be getting the appropriate treatment. For this you're best seeing a neurologist who specializes in headaches.

There is a good UK based CH group - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - who should be able to help direct you to someone appropriatly skilled (there must be one at BRI, LGI or St James's).

And the neurologist was correct about medication being able to cause rebound headaches. Although this need not explain all your headaches away.

So in case you do have CH, I'd read up a lot here, especially around preventives (verapamil / lithium / topomax (and others)) plus abortives (oxygen, imitrex, etc).

Going to see a neurologist with information will get you a lot better result.

I have been reading through some of the posts on here and I have to say I feel really, really lucky.

I have been having these headaches for the last 9 years or so as I said earlier in my first post, but they have not been as severe as some of you guys here. My main problem with the CH's was the fact that they were chronich. So whilst they weren't cripplingly painful they were constant.

I have now started on the Verapamil and am also on day 4 of not smoking and I have just had 3 pain free days in a row...

WOOHOO!!!  ;D

Just had a minor headache this morning which is gone now which is what made me write this post. I'm rather hoping though that this one is down to the Champix that I'm taking for the smoking. Apparently one of the side affects of Champix is headaches... DOH!  ::)