Cluster Headaches

My Name is Eleni I am 30 years old and have been suffering from Cluster Headaches now for approximately 7 years however have only been correctly diagnosed for the last 3 years, which by the way was NOT by my doctor it was by my husband and sister who would sit on the computer day and night researching on the internet to try and find out what this pain was that I was going through as it was 100% NOT a migraine like my doctor constantly diagnosed me as having for years and years.

When eventually my doctor finally listened to me once I demanded to be referred to a neurologist that is when I was finally diagnosed correctly that I suffer with Cluster Headaches... Finally will I now get these evil headaches under control???

When reading through all of your messages I am saddened and can relate and sympathise to all of your pain that each person is experiencing.

The pain I experience....

It is always my right hand side of my neck, head, eye and jaw/ teeth. This pain feels like someone is pulling and stabbing my eye out of its socket without any pain relief along with someone yanking all of my teeth out one by one...before I even get a chance to prepare for this pain once again BANG the pain it in its full peak without any warning. I could not tell you if my eyes water as many people say this is one of their symptoms however this is only due to the fact that when I have a cluster I cry and scream like an absolutely baby just wanting to die just so that the pain will stop... after rocking myself back and forth and taking my injection the pain eventually STOPS suddenly just as sudden as it begun.

I have noticed a pattern that my clusters seems to follow..

Every 18 months I wake up approximately 2 hours into my sleep with a cluster headache and that's me for the next 4 weeks. I have read that people say there clusters are worse at night and I have to agree that this is mostly the case for me as well. Whether its a case of the fact that for days on end I have not slept and that these cluster headaches have completely wiped out very ounce of energy I had I don't know but to say the pain is excruciating is an understatement.

I am a married women who luckily enough I have the most amazing husband ever who is there for me throughout each and every one of my clusters helping me to understand that it will only be 20-45 minutes of this pain and I will feel better soon but for the people who go through this all on their own I can only but sympathise with them.

I have found that a few things I do seem to help slightly ease the pain following each and every time I get a cluster...

Make sure that you either go outside or open all your windows for as much air as possible and take as deeper breath as possible through your mouth and then exhale through your nose. I have been told this helps by getting as much oxygen to the brain as possible which is why some people use oxygen tanks. I usually stand up which I find is better than sitting down.

Water is a must for me, I drink as much as my body can take without feeling sick. Make sure it is not ice cold which can be just tap water or room temperature. This seem to dilute the length of my clusters ( be aware though that you can actually drink too much water for your body as well though )

Do not take hot baths at all. I found that heat only but intensifies the pain for me even crowded rooms

Do not use any deodorant, perfumes/ aftershaves, sprays or anything with oil based. Avoid strong smells even things like petrol.

I would advise not to drink alcohol as this can bring on clusters and intensify a cluster

maybe try using a cold flannel on your forehead

Try making a very very strong black coffee no sugar and drink as quickly as you can ( please be aware that for some people this can make a cluster worse but for me it seems to helps )

I make sure that I do not use any products on me like muscular pain relief gels in particular Menthol fragrance gels due to the smell as I mentioned above.

I avoid chocolate, cheese and any other items that generally cause headaches

I think the one thing that is the most upsetting is that for years and years NO ONE apart from my family would or could sympathise with the pain I go through every time I am in a cluster cycle. unless they experience seeing me when I get one in front of them. People at work would try to understand by saying “That's awful, I know when I get a headache I have to go to bed and lay down and try and get some sleep” but as we all know this is not like a normal headache this is by far the worst pain any human being could go through and so when people hear the word cluster headache they just assume its like the same thing and it cant be as bad as you make out.

I am lucky that I actually had a very understanding work place and they sent me home and told me to come back when I felt better but I am sure that for most people this is not the case and I just wish that this was taken much more seriously once and for all by doctors who seem to incorrectly diagnose people all the time with migraines!!!

Just in case this helps the medication I am prescribed during a cycle of my cluster headaches are

( Obviously I can not say which medication will suit each person but this seems to have helped me )

x3 tablets a day of Verapamil 80g which is a calcium channel blocker which is meant to prevent a cluster from coming on or at least limit the number of attacks I suffer from ( I take this when I am in a Cluster and carry on taking this until 1 week after my 4 week period which I usually have my clusters for )

Sumatriptan / Imigran Injections 6mg which is what I take at the acute of an attack. The only problem is I am only allowed to take 2 of these in 24 Hours so I have to use my judgement on which cluster I feel I can handle without medication or if I need to take the injection. Once I have taken this injection which I would suggest in your arm my cluster would go within minutes. I must say that all medication is so so expensive especially when you are off work trying to deal with this horror situation.

I really hope that, even if one of my part of my advise above helps just one person then I would feel truly grateful.

Good Luck ( please remember I am not a doctor and can only go by what helps me this might not help everyone )

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