Well I have had my latest appointment with my neuro last week and he feels going to Queens Square (National Neurology hospital in London) is now the best place to help my 'unusual headache soup'. My first question is, has anyone here in the UK been to the National Hospital?

I joined this site about 16 months ago when I was told by my neuro that I had CH but I had a 'lot of other stuff going on' as well. Basically my 'headache soup' consists of a constant migraine-like headache all over my scalp and temples (I have not been pain free since this cycle started in July 2009) with facial pain (random every few minutes or so, pain is up and down) and CH (although no real pattern and the pain is on my LH and RH). I have been on various medications and had to come off Topamax due to its 'village idiot' effects, although I found this to be the most effective med so far as I have quite a lot of debilitating problems (aura, numbness in limbs) that it's helped me deal with. I have had scans, MRI, CT and LP to make sure I have no underlining problems and am also on Verapamil which has helped the amount of CH attacks and on Oxygen to abort. My body can't stand triptans, I have tried them all, but they put me in a weird giddy trance for a few days (and have no effect).

I am now trying Epilim as a 'last go' before I am referred to London, my next question is, has anyone tried this? I couldn't find a reference anywhere...

I'm very much struggling with the pain and symptoms now especially at work, but I will try and keep going (I have a great family and fiance who are amazing supporters). How do people explain their headaches? I have printed the letter from OUCH and I am a very patient person to explain my situation, but still people assume 'migraine' and switch off or still give me cures to try! I wish just having some fresh air or cutting out caffeine did cure this! So I am curious to see how people dealt with work colleagues who continue to not understand? My managers are the most difficult...and my neuro has even written to them.

The cluster headache info to me is really interesting but I don't know where I place myself (cluster headache or cluster-like headache). I think this site and OUCH are the best websites and I would like to stay on here and help others and would be interested in hearing if anyone has heard of such a mix of headaches? I have looked at the cluster-like info (I won't self diagnose myself, but for the moment I am still not too sure...)

Thank you all for reading x

You're a mess! ;)

Seriously, I'm so sorry, that's one hell of a full plate you're dealing with there. :( We have a number of members who sadly have multiple diagnosis, ch and migrains, ch and occular migrains, it makes the diagnosis a whole lot tougher when they have multiple problems to figure out.

Praying the specialist can get you on a better road!

Joe

Guiseppi wrote on Jan 9^th, 2011 at 10:06pm:

You're a mess! ;) Seriously, I'm so sorry, that's one hell of a full plate you're dealing with there. :( We have a number of members who sadly have multiple diagnosis, ch and migrains, ch and occular migrains, it makes the diagnosis a whole lot tougher when they have multiple problems to figure out. Praying the specialist can get you on a better road! Joe

Yes a mess is one way of putting it! I am trying the best I can to cope before I go to the National Hospital, got to keep busy and work and try not to think about it as much as possible (getting harder at the moment though!)

I have ordered a new triptan to try today, I thought I had tried them all, but it doesn't seem so (I get the impression and from what I have read maybe it is because they are expensive they are not given on NHS right away?) this is a good thing because it is another option!

Thank you for your post :)

You are probably doing this already, but it would be helpful to your drs if you kept a laundry list of everything you have tried, in what amounts and frequency, and its effects. Also, for your own peace of mind, search this site and make note of anything and everything someone has tried that has been effective for them. Having such a list (I still keep one) helps keep hope alive cuz there's still something you haven't tried that might work. You've been dealt a pretty tough hand. Here's hopin' and prayin' you are pain free soon. lance

Emma_s wrote on Jan 13^th, 2011 at 11:29am:

Guiseppi wrote on Jan 9th, 2011 at 10:06pm: You're a mess! ;) Seriously, I'm so sorry, that's one hell of a full plate you're dealing with there. :( We have a number of members who sadly have multiple diagnosis, ch and migrains, ch and occular migrains, it makes the diagnosis a whole lot tougher when they have multiple problems to figure out. Praying the specialist can get you on a better road! Joe Yes a mess is one way of putting it! I am trying the best I can to cope before I go to the National Hospital, got to keep busy and work and try not to think about it as much as possible (getting harder at the moment though!) I have ordered a new triptan to try today, I thought I had tried them all, but it doesn't seem so (I get the impression and from what I have read maybe it is because they are expensive they are not given on NHS right away?) this is a good thing because it is another option! Thank you for your post :)

Hi Emma, I am most interested to know how you are getting on with your new triptan.
I was prescribed a new triptan (Migard Frovatriptan) on the 2/06 last year, I have yet to try it, it was on the recommendation of the latest neuro whom I consider an idiot, the first drug he came up with nearly killed me so I am cautious, also my gp told me that it was the first time she had prescibed Migard & wondered if it was any good plus they are expensive £7.00 each, or they were last year.
I really feel for you, I am in my 26th year of clusters & I don't think I have suffered any where near as much as you, I just get clusters, nothing else.
My medication is pretty simple as well, Dihydrocodine at 40mg, maximum 320mg a day, oxygen & sumatriptan nasal spray at 20mg, the spray usually works well but I don't want the body to get used to it so limit use, plus they are expensive as the practice reminds me, often.
My attacks started May14th 1985 14.30hrs & I went chronic October 10th, 2000, 12.10hrs, Nico's bar/cafe, Arillas, Corfu, Greece, that information is for Lance, I do not keep a diary, just tend to remember my cluster history.
Sorry to go on a bit Emma, I pray that you are getting more pain free time now. Keith.

wimsey1 wrote on Jan 14^th, 2011 at 7:42am:

You are probably doing this already, but it would be helpful to your drs if you kept a laundry list of everything you have tried, in what amounts and frequency, and its effects. Also, for your own peace of mind, search this site and make note of anything and everything someone has tried that has been effective for them. Having such a list (I still keep one) helps keep hope alive cuz there's still something you haven't tried that might work. You've been dealt a pretty tough hand. Here's hopin' and prayin' you are pain free soon. lance

Hello Lance, thank you!

I brought a new thick notebook today to continue my diary but this will include as much information as I can. I used to update a computer diary but wasn't always effective as I wasn't always at the computer and would miss things off even if I made paper notes. Thanks again x

Storm wrote on Jan 15^th, 2011 at 3:57pm:

Emma_s wrote on Jan 13th, 2011 at 11:29am: Guiseppi wrote on Jan 9th, 2011 at 10:06pm: You're a mess! ;) Seriously, I'm so sorry, that's one hell of a full plate you're dealing with there. :( We have a number of members who sadly have multiple diagnosis, ch and migrains, ch and occular migrains, it makes the diagnosis a whole lot tougher when they have multiple problems to figure out. Praying the specialist can get you on a better road! Joe Yes a mess is one way of putting it! I am trying the best I can to cope before I go to the National Hospital, got to keep busy and work and try not to think about it as much as possible (getting harder at the moment though!) I have ordered a new triptan to try today, I thought I had tried them all, but it doesn't seem so (I get the impression and from what I have read maybe it is because they are expensive they are not given on NHS right away?) this is a good thing because it is another option! Thank you for your post :) Hi Emma, I am most interested to know how you are getting on with your new triptan. I was prescribed a new triptan (Migard Frovatriptan) on the 2/06 last year, I have yet to try it, it was on the recommendation of the latest neuro whom I consider an idiot, the first drug he came up with nearly killed me so I am cautious, also my gp told me that it was the first time she had prescibed Migard & wondered if it was any good plus they are expensive £7.00 each, or they were last year. I really feel for you, I am in my 26th year of clusters & I don't think I have suffered any where near as much as you, I just get clusters, nothing else. My medication is pretty simple as well, Dihydrocodine at 40mg, maximum 320mg a day, oxygen & sumatriptan nasal spray at 20mg, the spray usually works well but I don't want the body to get used to it so limit use, plus they are expensive as the practice reminds me, often. My attacks started May14th 1985 14.30hrs & I went chronic October 10th, 2000, 12.10hrs, Nico's bar/cafe, Arillas, Corfu, Greece, that information is for Lance, I do not keep a diary, just tend to remember my cluster history. Sorry to go on a bit Emma, I pray that you are getting more pain free time now. Keith.

Hello Storm, thanks for your post.

I don't seem to have as many auras today though the pain is still very much there and my eye is hurting a lot! I am taking Frovatriptan now too, a tablet every day.

I tried Sumatriptan and I couldn't handle it well and it seemed to make my migraine-like symptoms worse so am trying different versions now. The triptans make me feel like I am 'loosing it', but I am in pain so it is finding the balance of if the tablet is working to making me pain free and if the side effects are worth it.

How do you find Dihydrocodine? I take codiene on the odd occasion (not for headaches) but avoid it as rebound headaches (those caused by codeine) aren't welcome in my head!

:) PFDAN to everyone x

Storm wrote on Jan 15^th, 2011 at 3:57pm:

Emma_s wrote on Jan 13th, 2011 at 11:29am: Guiseppi wrote on Jan 9th, 2011 at 10:06pm: You're a mess! ;) Seriously, I'm so sorry, that's one hell of a full plate you're dealing with there. :( We have a number of members who sadly have multiple diagnosis, ch and migrains, ch and occular migrains, it makes the diagnosis a whole lot tougher when they have multiple problems to figure out. Praying the specialist can get you on a better road! Joe Yes a mess is one way of putting it! I am trying the best I can to cope before I go to the National Hospital, got to keep busy and work and try not to think about it as much as possible (getting harder at the moment though!) I have ordered a new triptan to try today, I thought I had tried them all, but it doesn't seem so (I get the impression and from what I have read maybe it is because they are expensive they are not given on NHS right away?) this is a good thing because it is another option! Thank you for your post :) Hi Emma, I am most interested to know how you are getting on with your new triptan. I was prescribed a new triptan (Migard Frovatriptan) on the 2/06 last year, I have yet to try it, it was on the recommendation of the latest neuro whom I consider an idiot, the first drug he came up with nearly killed me so I am cautious, also my gp told me that it was the first time she had prescibed Migard & wondered if it was any good plus they are expensive £7.00 each, or they were last year. I really feel for you, I am in my 26th year of clusters & I don't think I have suffered any where near as much as you, I just get clusters, nothing else. My medication is pretty simple as well, Dihydrocodine at 40mg, maximum 320mg a day, oxygen & sumatriptan nasal spray at 20mg, the spray usually works well but I don't want the body to get used to it so limit use, plus they are expensive as the practice reminds me, often. My attacks started May14th 1985 14.30hrs & I went chronic October 10th, 2000, 12.10hrs, Nico's bar/cafe, Arillas, Corfu, Greece, that information is for Lance, I do not keep a diary, just tend to remember my cluster history. Sorry to go on a bit Emma, I pray that you are getting more pain free time now. Keith.

That's not recommended for clusters.

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