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New member, living with CCH

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#1 Thu, 01/12/2022 - 10:28
Dan.B
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Last seen: 1 month 4 weeks ago
Joined: 01/12/2022 - 09:32

New member, living with CCH

Well where do I start, I have known about OUCH for some time now, my neurologist suggested I join when I was diagnosed by her some 5-6 years ago but I've only just signed up realising the good the charity does. 

I'm 32 married to a beautiful wife and together we have an amazing 3 soon to be 4 year old son and I'm a chronic cluster headache sufferer. 

I have had 5-6 years of relentless cluster attacks with no sign of it easing or getting easier to deal with. The excruciating pain is like nothing I have ever experienced and there's no way I can describe to friends and family to get them to understand it to the true extent. 

My wife is understanding and caring and tries to help guide me through the pain during an attack but truthfully there isn't anything she can do except watch or listen to me during the attacks. 

I have had many different treatments to try and combat the CH however none have really done the job. I am currently on a combination of Verapamil (960mg spread over the day) I have GONI injections every three months and use 6mg Sumatriptan injections when attacks occur (at the time of writing this on average 6-8 attacks per day) this is the best combination of treatments I have had so far but it is by no means a cure. Without the Sumatriptan injections I would not be able to work and support my family, I do thankfully have an understanding employer who is aware of the condition and what I need to do when attacks occur. 

I've lost employment in the past due to CH because they just didn't understand what I was going through and didn't care either. 

I have been prescribed oxygen at home before but it either didn't work or took too long and I couldn't sit still long enough to use it. 

Personaly for me the imigran injections are trerrible, they bruise my leg and create patchy areas of damaged tissue in my leg. The mechinism is also awful. 

I have found a different manufacturer of injections and they have been a god send, Sun Pharmaceuticals produce a pre-filled single use injection pen which has a window so you can actually see when the Sumatriptan has fully gone in and do not cause the discomfort and bleeding that the imigran ones create. I urge anyone who hasn't used them before to encourage thier g.p/neurologist to swap to them. 

I wouldn't wish the pain I experience during attacks and the fatigue afterwards on anyone. Its truly brutal. But I push forward and refuse to let this condition get the better of me. 

My neurologist who has been my real saviour through all this (big shout out to Dr.Medcalf) has suggested and has set the wheels in motion, because of being chronic and the amount of attacks I have, I've put forward for a surgical implant where an electrical stimulator will be fitted to my occipital nerve to treat attacks. I'll be honest I'd try anything to stop the pain. 

If this is successful and I am accepted for this implant I will of course keep this forum updated on progress. 

I understand there are many of us who suffer terribly with this condition. I hope that reading this gives people, even if only one person some comfort to know they are not alone and to keep fighting with medical professionals to find the best solution for your situation. 

If your current treatment isn't working don't be afraid to reach out to your g.p/neurologist and ask to try something different. 

Your not alone. 

Keep pushing! All the best,

Dan 

 

Sun, 04/12/2022 - 22:31
Val
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Last seen: 1 month 3 weeks ago
Joined: 21/03/2012 - 15:16

Hi Dan

Welcome to OUCH [UK] !  What a time you have had with your CH.  I am replying because I too am chronic and have had the ONSI which you are being considered for.  I use the Sun injections and also the new oxygen therapy demand valve oxygen.  I'd suggest you read our 'Cluster Headache Basics' and also High flow oxygen notes, both will tell you about demand valve, which works much faster for CH.  Before I had my ONSI implanted in 2008, I was getting between 1 and 5 attacks every 24 hours and I worked had worked my way through all the preventives.  The only treatment that worked to give me PF [painfree] time, was dihydro-ergotamine infusions which I had to got hospital to have over five days and I had these four times a year.  They are quite strong , but I tolerated them quite well and they gave me at least a couple of weeks off four times a year, but because it is such a hard drug on the system, it is not a treatment you can have on a permanent basis.  So ONSI was done and I went from those 1 to 5 a day to 1 or 2 a week, sometimes I get a couple of weeks painfree.  But when I do get the attacks, an injection of sumatriptan and the demand valve oxygen see it off in about 10 to 12 minutes, sometimes less.  I am still chronic, and I never know when I will get an attack, but as long as I carry my injections in my bag, and the portable 02 in the boot of the car and I have a much better life now.  I know that the ONSI is not a 100% for everyone, but by the time I had it I would have crawled on broken glass if it meant some relief!  It also meant I could work from home, [freelance audio-typist].  I travel overseas [ see our holiday notes in the downloads for useful tips on holiday meds.  Don't forget we have an advice line too, all our volunteers are sufferers.  Ask all the question you want, there  is no such thing as a stupid question where CH is concerned.  And we also have a supporters section on our forum.  

So once again welcome aboard and have a good reading session! 

Best wishes

Val

Wed, 07/12/2022 - 11:25 (Reply to #2)
Colin Allen
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Last seen: 5 days 10 hours ago
Joined: 21/03/2012 - 15:19

Hi Dan,and sadly welcome to OUCH(UK). It's a big bonus when you have a concerned and knowledgeable neurologist. Has anyone suggested Frovatriptan to you? It is a tablet form of your injections which can have a really good impact on the attacks. Obviously,a tablet will be of no use to abort an individual attack because of the delay in being absorbed into the system. However, Frova' usually begins to work within 24 hours and can have a profound impact on attacks. Obviously it doesn't work for everyone,but many people take it to give themselves a much needed pain free time,often taking it prior to going on holiday. We don't fully understand why it works so well,but an unusually long half life of 26 hours could be a clue.

A silver bullet for CH you may think. Not quite,unfortunately. We know from experience that attacks will start to break through after time - how long a time varies from person to person. You would then be well advised to stop taking it and revert to your normal medications. It's pointless taking medication if it has ceased to be effective,and it may prevent you from receiving benefits some time later. In other words,use it sparingly. I am not a healthcare professional,and you should not take or stop any medication without the express permission of your GPs/Neurologist.

It's no use asking how long it will work - everyone responds differently. It may not work for you at all,but it's certainly worth a try. Good luck.

Sat, 28/01/2023 - 19:05
Clarabel27
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Last seen: 4 days 6 hours ago
Joined: 28/01/2023 - 15:59

Hi Dan, I'm new here too, although not a new CH sufferer!

I was diagnosed 5 years ago, initially episodic, which is now chronic.  Sounds like I have been through very similar treatments.  Verapamil did nothing for me, even at maximum dose.  Home oxygen therapy helps a bit in addition to the Sumatriptan.  I also have the 3 monthly GONI.

My current episode started on 5 November, longest one to date.  I'm exhausted, I don't want to go to sleep as I know that within a couple of hours I will be wide awake clutching my head.  My son came home this evening to find me on the floor rocking & crying.  I found myself apologising for seeming pathetic being in such a state over a 'headache', fortunately my immediate family get it, so many don't.

I'm currently considering the same treatment you mention moving forward.  Like yourself my neurologist Dr Medcalfe is awesome.

I haven't discussed this treatment in any great detail with her yet, she has suggested it at my last 2 OP appointments.

 I'm kind of at the point of wondering if this is as good as it gets or do I take the scary step of trying something new in the hope it gets better.

Cath 

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