Cluster Headaches- help needed.

Cluster Headaches- help needed.

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Discussion

DarrenL

Original Poster:

459 posts

182 months

Saturday 14th August 2010
quotequote all
Chaps and Chappettes,

A friend of mine has been suffering from cluster headaches. All very nasty, he has had these headaches on and off (mostly in the summertime) for at least the last year, if not two years.

He's in a pretty bad way at the moment and im hoping someone on here can post some helpful advice/advice the docs might not have thought of.

He just sent me this on Facebook (which is why its in first person).

Any help would be amazing.

DarrenL's friend wrote: "The illness is called Cluster Headaches, I take Sumatriptan Succinate as an abortive. Oxygen used to work as well at a flow rate of 15 litres per minute, but it no longer does anything.
Preventatives don't work on me, I still take some though, God knows why.
At the moment, I am on, Sodium Valproate @ 500mg twice a day, and Prednislone @ 60mg daily, taoering down by 10mg daily for another 5 days.
The other prophylactics (preventatives) I have taken are : Naratriptan, Rizatritan, Topiramate, Verapamil, Indomethacin, Lithium carbonate, Propranolol, Amitriptyline, Cyproheptadine, Neurontin...plus a few others and then obviously the Occipital Nerve Block Injection that I had on Wednesday"

If the Nerve Block Injection doesnt work, the next step is surgery.

Does anyone have any info which may help?

Thanks

Daz

Nardies

1,190 posts

226 months

Sunday 15th August 2010
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I don't know how helpful this will be but...my GP diagnosed me as having a cluster head ache after 14 weeks of almost constant pain. I was prescribed stronger and stronger pain killers, all of which had no effect. The GP resolution was for more potent pain killers, but I couldn't be bothered, and got a second opinion from a physio.

As I do a lot of desk based work, crouching over a small laptop, he assumed the root cause of the problem would be some sort of spin/neck issue as a result of poor posture. I spent a lot of money having intense and in some cases painful physio/osteopathy, but the result is the headaches disappeared and have not come back.

OllieWinchester

5,679 posts

199 months

Sunday 15th August 2010
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How horrible, also known as 'suicide headaches' apparently...

King Herald

23,501 posts

223 months

Monday 16th August 2010
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Nardies said:
I don't know how helpful this will be but...my GP diagnosed me as having a cluster head ache......

I spent a lot of money having intense and in some cases painful physio/osteopathy, but the result is the headaches disappeared and have not come back.
I just posted on another thread about long lasting throbbing shoulder pain I had for about six months total, last year. Obviously not in the same league as these cluster headaches in question, but it was caused by bad posture in front of the PC.

Such a simple cause, and cured in 48 hours simply by changing my posture from slouching forward to sitting up straight. Google was by saviour!! Most common cause of mysterious neck, head and shoulder pains is bad posture in front of the PC.

And again, the doctor could offer nothing but tablets. No attempt at investigating, just wiggled my arm around a bit, then offered me the heavy drugs.

Nardies

1,190 posts

226 months

Monday 16th August 2010
quotequote all
King Herald said:
Nardies said:
I don't know how helpful this will be but...my GP diagnosed me as having a cluster head ache......

I spent a lot of money having intense and in some cases painful physio/osteopathy, but the result is the headaches disappeared and have not come back.
I just posted on another thread about long lasting throbbing shoulder pain I had for about six months total, last year. Obviously not in the same league as these cluster headaches in question, but it was caused by bad posture in front of the PC.

Such a simple cause, and cured in 48 hours simply by changing my posture from slouching forward to sitting up straight. Google was by saviour!! Most common cause of mysterious neck, head and shoulder pains is bad posture in front of the PC.

And again, the doctor could offer nothing but tablets. No attempt at investigating, just wiggled my arm around a bit, then offered me the heavy drugs.
Exactly the same for me. I never once was seen by the GP, I was diagnosed over the phone each time, and prescribed stronger meds when nothing worked. I was even prescribed anti-depressants at one point, I wasn't even depressed but apparently they 'helped with headaches'

Scott Lawrence

3 posts

171 months

Monday 16th August 2010
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I am the sufferer in question....

Unfortunately due to the nature of the illness, physio or osteopathy won't even touch this condition...

Darren posted this to see if anyone had been offered a treatment that I haven't been so far....
I have tried everything, nothing is working at the moment, except for Imitrex (Sumatriptan Succinate) injections.

Most recently I had Occipital Nerve Block injection, this didn't work.
It looks like the next stage is to have electrodes implanted onto the Occipital Nerve...

I just wanted to thank you for taking time to actually post something on here, words cannot describe what I am going through (attacks every 2 hours) and it makes a lot of difference to me knowing that there are people out there that are willing to look into this.

Thanks once again.

Scott

YarisSi

1,538 posts

251 months

Monday 16th August 2010
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Hi Scott,

You could come and try The City of London Migraine Clinic (www.migraineclinic.org.uk). They see quite a few cluster headache patients (they have even made two small videos about cluster/suicide headaches).

I take it your in contact with OUCH who will be able to tell you about the Clinic and you can refer yourself or be referred by your GP.

I'm at the Clinic helping out for a bit if you give them a call.

Si

Scott Lawrence

3 posts

171 months

Monday 16th August 2010
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Si,

I have just filled out the form requesting an appointment, I would call, but can't really speak due to the pain in the right hand side of my face.
How long do you think it will be before I can get seen?
I am getting very desperate, I'm having attacks every 2 hours and they are getting more and more painful.
I'm afraid that I'm doing myself damage with the amount of Sumatriptan I'm injecting, I'm not really eating and feeling very unwell on top of the pain from the attacks.

Thank you for your help so far.

Scott

Scott Lawrence

3 posts

171 months

Monday 16th August 2010
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Si,

I have just seen about the donation. I cannot afford this.
I haven't worked for 3 weeks, and will not be getting paid this month, shall I cancel the appointment?

Scott