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New here, not to CH’s

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#1 Tue, 18/07/2023 - 22:22
SHERIDAN38
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Last seen: 11 months 4 weeks ago
Joined: 18/07/2023 - 16:52

New here, not to CH’s

Hi all

Some background on me - I have suffered with ECH since I was about 14, possibly earlier. I'm 38 now and they are still with me. They come in cycles.  In the terribly bad old days, I really don't know how I coped. My wife, whom I met 16 years ago, has witnessed me literally punching my head to try and release the pain, they truly are horrendous. Every time I went to try and get some proper medical help, they would subside and so I never followed it up. They generally come on every 18 - 24 months and last for about 8 weeks. I am currently "in season" now as the wife calls it! The injections are the only thing that work. Spoken to many GP's " oh have you tried this, have you tried that" - please just give me the injections! I've had the injections for about 6- 8 years now and they are a breath of fresh air.

Like everyone, I have tried to work out triggers. Unfortunately, I do smoke and nicotine is definatly a trigger, as is alcoholol, but not all the time ( when "in season"). I can go out have drinks, no issue. I can have one drink, and the monster has woken up, I can feel my eye tightening and it's about to attack.

the issue at the moment for me , and why I have decided to reach out and look for some help, is this "season" has lasted about 13 weeks, and they are getting worst. I had 3 today, 3 yesterday, 2 the day before and I usually expect them to start to subside by now, and reduce to one or two a week.

Does anyone who has ECH, have experience/ noticed longer periods, and if so, any ideas to send this back for another couple of years.

 

thanks for listening and any suggestions

Wed, 19/07/2023 - 03:32
Littlelola
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Last seen: 2 weeks 1 day ago
Joined: 29/03/2023 - 00:01

Hi, so sorry to hear you're experiencing a long cluster. I have suffered with chronic cluster head pain, (hate calling them cluster headaches, as the word 'headache' just does not even begin to describe the pain!) since I was 12, I am now 51.  I get very long 'episodes' that last most of the year, they tend to go in cycle bouts, having several everyday for a week, then a break for 2-3 weeks, then back they come.  I have no triggers, I've kept a pain diary for years and there is no pattern, not seasonal, just consistent!  I have home oxygen which can help early onset, but the only thing that really is a miracle worker for me is sumatriptan injections they are just a life changer. My consultant has recently advised me to start some steroid treatment to try and 'break the cycle' maybe you could discuss this with your consultant too?  I've been prescribed a full course which is taking 12 tablets a day to start and then slowly reducing down to zero.  I am virtually at my wits end with the pain, and will try anything.  People find it hard to understand, thinking it's just a headache, if only they knew the truth!  Keep strong and sending you hope that your horrendous pain subsides soon.  

Wed, 19/07/2023 - 08:22
Gary
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Last seen: 1 month 3 weeks ago
Joined: 13/07/2018 - 20:38

My sympathies, it's an awful thing to have to cope with and can be so all-consuming when you're in the midst of it.

I was 18 when attacks started (1981), initially as CCH, but over the years became definitely ECH.  My clusters at that point were typically every spring and autumn and lasted 6-8 weeks, each cluster generally starting with one attack a day and building to a peak of 2, 3 or sometimes 4 intense attacks every 24 hours and then would subside in intensity and frequency fairly rapidly.  I'd then have a few months off, or if I was lucky I'd skip a cluster for some reason.  Having said that I would sometimes get a rogue cluster which, as you are currently having to endure, would last several weeks longer (or sometimes even start and then peter out before it got going).  Over the years I got to realise that it can be very difficult to predict with any certainty and I was better off mentally expecting the unexpected, it almost felt as if the condition was playing games with me every time I thought I has worked it out.

As mentioned  above, it may be worth getting referred back to your consultant to see if there are any other treatment possibilities which might be appropriate for you.  The advice line can provide details of headache specialists in your area if needed.

Wishing you a speedy end to the current cluster!

Wed, 19/07/2023 - 10:30
SHERIDAN38
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Last seen: 11 months 4 weeks ago
Joined: 18/07/2023 - 16:52

Thank you guys. I have never seen a consultant, or a nuerosurgeon about these - at best its been an (on-line) GP, and they change from appointment to appointment although they do have previous notes. They are obviously supportive but somewhat out of their depth asking me If I have tried strong painkillers before I tell them to go away and do some research on it. One of them did subscribe me the injections about 6 years ago and they are a game changer, although I have gone through 50+ in the last 12 weeks.  I only have 2 left and a call with them this morning to get some more. I think its about time I asked for a referral , could not live with these on a daily basis, every two years is manageable but this is horrendous.

 

Wed, 19/07/2023 - 11:15
Gary
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Last seen: 1 month 3 weeks ago
Joined: 13/07/2018 - 20:38

You definitely need to be referred to a specialist, GPs just don't have the expertise generally.  The advice line can help with pointing you in the right direction with the name and location of suitable specialist doctors - 0800 6696 824

Thu, 20/07/2023 - 10:47
Colin Allen Vic...
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Last seen: 1 week 11 hours ago
Joined: 21/03/2012 - 15:19

Good advice from Gary - make that call to the advice line,it will pay dividends.

Colin Allen

Vice Chairman

Wed, 26/07/2023 - 19:55
Nicky Smith
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Last seen: 10 months 3 weeks ago
Joined: 09/03/2023 - 12:07

Hi 

My neurologist prescribed verapamil to start at the beginning of an episode and then to continue with my treatment of zolmitriptan sprays  (which I don't find all that great but they reduce the length of attack I think, but like your injections I go through so many)

The verapamil is supposed to be increased from low dose to high gradually to bring an end to the episode itself.. I will say my experience of verapamil has not been great.. I have fairly low blood pressure anyway and that reduces it more so last episode I had to go to a much higher dose than before and initially I felt awful from that... But I hoped worth it to stop the episode.. Then you wean off them, though I have heard about others who stay on it.  I think it did shorted the episode this time from the usual 12 to about 9/10wks,  but it was a bit of a blur.. Anyway it might be worth speaking to the advice line /gp or consultant about it. 

I do plan to start it again as soon as next episode starts, my gp is quite good at prescriptions for me as soon as I ask. But you do need to have your heart monitored if you go on verapamil, so may not be suitable. 

Best of luck, hope it eases soon. 

Nicky Smith 

ECH sufferer 

 

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