Cluster headaches or Not??

[nh_user_30649]

I am 62 years old and on 14th Feb this year I had my first extra painful headache. Started with watering left eye (which turns into a noticeable drooping lid) and in the upper back gum/molar area and then spread to my eye and above into my forehead. There was no pre warning and in 62 years I had never experienced this previously. I am now into the 9th week with pain ranging from a just tolerable 5 on my own scale to a full on 10 which is virtually unbearable and on two occasions recently I had to score a "12" which is a palce that I would not want to put my worst enemy!!!

Initially, these attacks were confined to two particular times of the day, around 7.30 pm and then again after an hour or so around 11.30 pm.

More recently they can occur during the daytime, especially in the afternoons.

Sometimes the timescale is very short of a few minutes in the daytime , but normally around one to two hours in the evenings and at night.

My GP has suggested from the early stages that this is a syndrome "cluster headaches" and currently I am taking verapamil 80mg 3 x per day and have Zolmitriptan nasal spray which if I catch the attack at the right time can sometimes seem to help.

I have tried to obtain as much information as I could by reading various medical descriptions and also some patient emails on forums.

The one thing that I have yet to see on any information is the "draining" feeling I get either just before the onset, sometimes during and for example today after a particularly painful attack last night. After this attack and having taken the nasal spray even two hours later it felt as if my eye had been punched, I had a stabbing pain in my ear and my gum was numb. To me there is something that has a peculiar taste which seems to drain from somewhere above the gum at the rear of my mouth. I have had dental xrays so there is definitely no tooth abscess, however having had one before the sensation is similar.

I have tried to make sense of this problem, but as I explained to my GP everything seems completly random. I have stopped drinking anything alcoholic for weeks, I eat a healthy diet, and try to avoid what is said to possibly start these "clusters" but whatever I do there is no let up.

Can anyone shed some light on this, as firstly according to the data that I have read I am over the normal upper age limit and what is the "draining" that is evident.

Thank you.

Chris

.

[nh_user_30761]

Chris,

My sympathies!

I was a chronic sufferer of cluster headaches from age 19 to my thirties.

I did get a metallic taste in my mouth when an attack was coming.

However, as you say it appears unusual for clusters to start at your age.

It might be a good idea to check that there are no other diagnoses that fit your symptoms.

Nonetheless, cluster headaches are still not that well understood, and what you describe seems pretty cluster-like.

It may simply be that older patients have been misdiagnosed or ignored.

Have you had any major lifestyle changes in the last few years?

When I was 18, I moved from the countryside where I grew up to a city to become a student.

At 19 my cluster headaches began. I did not know what they were for the next 17 years, so I explored many possibilities - including visiting the dentist, because of the pain in my gums.

I have had three periods of remission since entering my thirties, the most recent one lasted five years and ended when I was 42.

I noticed that about a year-and-a-half after moving to a rural area and commuting by bicycle to work, my headaches disappeared, then they started again about a year after moving to a more industrial area and commuting by public transport, again, I moved to a more rural area and started commuting by bicycle, and after about a year of that lifestyle they stopped again.

If you have recently (in the last few years) changed from an active, outdoor lifestyle to a more sedentary, more indoor lifestyle, that, in my personal experience, may have an effect on cluster headache frequency.

I am no expert on cluster headaches, nor anything else for that matter, but you may find some well-informed voices on: www.clusterheadaches.com

In any case, good luck.

[nh_user_1036163]

It's been over a year and you have probably forgotten this msg, but I just found it, I would suggest seeing a neurologist if possible, A GP would probably give you a painkiller, and a few other meds, as the is only other way that I know that treats a Cluster headache aka alarm clock headaches, or headaches from hell.. worse than any migraine i ever had. Is 10-15ml (??) of pure oxygen for approx 20 minutes, it should arrest an attack if taken within the first hour or so of the attack, otherwise, i dont think there is much to be done with cluster headaches. I do not believe there is an upper age limit of cluster headaches.. There is one or two that do occur that is just as painful and at least one that resmebles a cluster headache but both are quite rare and do have an age when they happen if the happen and usually it's a guy thing. Cluster headaches come without warning, (other than my dream what ever i am having, i get a headache in it, then wake up only to find it's not a dream) and once they hit you dont want to say laying down, not that you could, you just REALLY dont want to..For me, they leave me aggitated, exhausted and I tend to pace a lot.. I also have painkillers on the side, so kinda talkative too. I didnt have much luck with triptans, doesnt mean you would or wouldn't, but there is not much more than is known or can be done for cluster headaches, other than relief and let them pass thru. each attack is 20minutes to 3 hours, except mine feel they last more like 8 hours..it is possible it is not just one headache/attack but many. Attacks seem seasonaly, meaning they happen the same time each year, last for 3 weeks or so then repeat months or a year later or for some, longer periods of no pain. I lucked out and dont seem to be chronic, meaning non-stop attacks..  During an attack period, whether a headache is in progress or not, you wont be able to eact certain foods, it's different for everyone.. Mine is chocolate.. oh why oh why.. I hope after all this time you have been successfully treated and know more, as I'm just getting into it all.. well they began 3-4 years ago.. but.. I didnt dleve deeply into any specialized care till now, as I used to be treated for chronic migraines and dont look forward to taking all the meds again.  verapamil 240mg SR left me a zombie for a month till i got used to it but barely did so it was reduced to 120 SR. (sustanined release.). I still take inderal. the verapamil was stopped, my bp at the time was 70/60 and the dr wasn thrilled by that, so my gp stopped the one med. But migraines stayed at bay for 20 years, unfortunately now, i get these gawd awful things.. Maybe you have learned more since this past year, joined some support groups and such..Hopefully you are doing better..

cheers.