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Severity worsened - unsure why

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#1 Sat, 11/03/2023 - 11:16
Alexander
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Last seen: 10 months 1 day ago
Joined: 20/08/2021 - 11:41

Severity worsened - unsure why

Hello all - this is my first post on Ouch, I've been a silent reader up until now.

I'm 28 and I've been an episodic CH sufferer since I was about 21 years old. I've tried a lot of different medications and sumatriptan injections have been my saving grace.

I've always typically had headaches at the same time every day, for a few weeks, and then they're gone for ages as you'd expect. However, for the last 6 months they've been nonstop and I don't know why.

My headaches became more ferocious, more frequent, more unpredictable. I've gone from 6 years of having 1-2 headaches per day to having 6 headaches per day. I never had a headache at night before and now I'm getting woken up by 3 headaches in a single night, every night. I can only use sumatriptan twice daily so it's really caught me off guard! I'm not getting more than a few weeks off without the headaches coming back.

I feel like I've transitioned into a chronic sufferer for no reason and I don't know why.

It's affecting my work, my daily life, and I'm desperate to try and get a handle on this it because it’s jeopardising some of the most important years of my life but I'm really struggling.

My GP is relatively supportive but also clueless and my neurology appointment's already been delayed by 20 months. I'm welcoming any advice with open arms.

Thank you kindly, Alexander.

Sat, 18/03/2023 - 10:26
Phil
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Joined: 26/02/2014 - 17:02

Hi Alexander.

CH bouts can change. My current bout is relatively mild at only 2 attacks per day, but I've managed to squeeze 8 attacks into a day regularly in previous bouts.

Sleep is a trigger during a bout for a lot of us. Each bout severely impacts the quality of our daily lives; it is a disability after all.

Your Doctor may be clueless, but they have computers and books: Cluster headaches are on the headache tree under TAC (Trigeminal Autonomic Cephalagias) not Migraine (where most of them look) and section 4.7.4.3 in their BNF, if I remember correctly.

Hopefully, they can decide to help you while you wait for a Neurologist appointment.

Thu, 30/03/2023 - 11:58
Dorothy Trustee
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Last seen: 1 day 6 hours ago
Joined: 19/02/2014 - 10:16

Hi Alexander

Sorry for late response but wondered whether your GP has referred you to a headache specialist neurologist and do you have oxygen and a demand valve?  You would benefit from having a chat to someone on our Advice Line team on 0800 6696824. 

Hope by now your head has calmed down!

Dorothy 

Dorothy (Trustee)

Thu, 30/03/2023 - 20:34
MrT
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Last seen: 1 month 3 weeks ago
Joined: 01/12/2014 - 09:25

Sorry to hear that Alexander. I posted on 19/10/22 that my last cluster episode had changed also. it went crazy, like nothing I had experienced in some 30 plus years of having this lovely headache! I thought it may be down to changes brought on by Covid ? but thats just a stab in the dark I guess? I am now trying new drug treatment, my GP is doing his best, but like you I still have yet to see a neuro. I'd definately give the the oxygen route a go if you can. Good luck! 

MrT

Thu, 27/07/2023 - 16:54
Mags
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Last seen: 10 months 3 weeks ago
Joined: 22/07/2018 - 21:57

Hi Alexander, I too am a ECH sufferer and have noticed each yearly bout is getting longer and more severe. One thing my specialist has suggested was that the 6mg injections were adjusted into 3mg injections, ergo, I can take upto 4 per day. I have tried this and note the speed at which they impact is lessened, but I suppose that was to be expected. It does reduce the CH pain though and allow for more to be used in a given day if needed. This may be worth pursuing? getting both 6mg andf 3mg on repeats was a challenge, but that GP's for you. I am slightly worried that I am becoming so used to the injections that their impact is wearing off a little, which is making me very anxious, as this is the only thing that works for me. 

Fri, 28/07/2023 - 07:21
Gary
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Last seen: 1 month 6 days ago
Joined: 13/07/2018 - 20:38

Unfortunately the nature of CH is that it can alter in the way it presents.  If it is a while since you saw a specialist headache doctor it may well be worth getting a referral in order to check that the treatment regime is still optimal.  The advice line can help with the name of a specialist in your area.

Sun, 27/08/2023 - 07:51 (Reply to #6)
Alexander
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Last seen: 10 months 1 day ago
Joined: 20/08/2021 - 11:41

Hi Mags. This is very interesting as I specifically requested to my GP whether this was a possibility or not and they said it only comes in 6mg, so it appears my GP is mistaken.

One thing neurologists have assured me is the effectiveness of sumatriptan does not get less over time, so please don't worry about that from using it frequently. It'll only feel like it's working less if you mentally let yourself think it is, in a 'placebo like way' so to speak. The only thing to be cautious of is if using too much sumatriptan in a month it can in fact bring on more headaches which isn't ideal!

Thank you so much for commenting, this was very helpful.

Sun, 27/08/2023 - 07:52 (Reply to #7)
Alexander
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Last seen: 10 months 1 day ago
Joined: 20/08/2021 - 11:41

.

Sun, 27/08/2023 - 07:57
Alexander
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Last seen: 10 months 1 day ago
Joined: 20/08/2021 - 11:41

Thank you everyone for your responses and input, I really appreciate it. I was fortunately blessed with 3 months headache-free shortly after posting this original comment, however they are now back. I hope not for as long as before. I met with a neurologist in June and have been prescribed oxygen but I'm part of a 25 person waiting list with no definitive date. Patience is my best friend for the time being. Thanks again all.

Sat, 02/09/2023 - 13:56
janekbarcikowski
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Last seen: 9 months 3 weeks ago
Joined: 31/08/2023 - 16:03

hello I'm Janek just discovered ouch and forum but very similar thing is happening to me, around 12 years of episodic cluster headaches and now 3rd week of 6-8 episodes per day, 2-3 per night, more severe, I can't take verapamil (right bundle block on ECG), can't use gammacore (i have pacemaker and also had valve heart valve replaced and lobectomy) the thought that it could now become chronic (daily for) is paralysing me, I have been in bed for the last three weeks and just cant take it anymore. I'm using oxygen and sumatriptan nasal spray, never tried injections (should I?) had two virtual neuro consultations in the last 4 years (Covid and other reasons), have gp review on Monday will ask for referral but any suggestion would be greatly appreciated... 

Wed, 06/09/2023 - 13:30
Colin Allen Vic...
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Last seen: 1 week 2 days ago
Joined: 21/03/2012 - 15:19

Hi Janek,and sorry you are suffering so badly. Yes you should source sumatriptan injections,provided they are not contraindicated with your current problems. Please give the Advice Line a call,they will give you the name of an expert nearest to you. Good luck!

Colin Allen

Vice Chairman

Wed, 06/09/2023 - 13:32
Colin Allen Vic...
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Last seen: 1 week 2 days ago
Joined: 21/03/2012 - 15:19

Sorry, Advice Line number - 0800 6696824

Colin Allen

Vice Chairman

Thu, 14/09/2023 - 13:03
Pete
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Last seen: 2 months 2 weeks ago
Joined: 21/12/2015 - 07:21

Hi Janek,

Its horrible that you are suffering so much, you have my thoughts and empathy. I'm lucky that i have no physical problems preventing any type of treatment, so i'm on a heavy dose of varapamil which so far is keeping them away. I had (and still have) oxygen, but i didn't find it very effective, it took a while for the pain to go and it came back quickly. I'm on the sumatriptan epi pens, they work fantastically, take the pain away in 5 mins and keeps it away all night (i only had headaches at night/evening). I'd definately try the epi pens if they are not contraindicated, but convincing your gp will be hard, they are very expensive so they don't like to prescribe them! 

pete

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