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Occipital Nerve Block

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#1 Fri, 27/07/2018 - 09:27
cmcgrory
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Occipital Nerve Block

Hi guys

I had my first nerve block injection on Wednesday afternoon. I was told by the nurse administering it that as I was in the midst of an attack that it can make headaches a bit worse for a day or so - which it has. I also started my Verapamil yesterday and was wondering how effective most people found this combination?

Does it generally stop attacks for a period or reduce number/intensity of headaches?

I've been suffering constantly for over three months now and am really hoping for some respite rather than fighting off the pain with O2 and injections.

Thanks

Tue, 31/07/2018 - 10:15
Val
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Hello

Verapamil is a preventive drug for CH.  It is originally a heart drug called a calcium channel blocker.  In heart conditions the top dose is 160 mgs a day, in CH the daily start dose is 240 mgs a day going up to a top dose of 960mgs a day.  You have to have an ECG before starting and an ECG every two weeks before increasing the dose.  The ECGs are necessary because of the high level of verapamil used in CH and for the same reason the increases have to be gradual.  It may be several weeks or a couple of  months or so before you start to see a preventive effect with verapamil.  It is used as the first line preventive as it works for about 80 -85% of sufferers, and is generally well tolerated.  Common side effects are constipation and swelling of the hands and feet; rare side effect is heart block, hence the regular ECGs and slow increasing of the doses.  If you would like a copy of the suggested regime from the Institute of Neurology, PM me and I'll send you a copy by e-mail. 

Val

Sat, 04/08/2018 - 11:28
cmcgrory
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Hi Val

Thanks for that, I was more looking for people’s personal experiences with the nerve block and verapamil. 

Reason for asking is I was (perhaps naively) hoping for a period of respite after the nerve block but what’s actually happened is I’ve still been getting the headaches as much and still at same times albeit no killer ones for a few days. That unfortunately changed over the past couple of days when it’s been as bad as ever again. 

 

Thu, 09/08/2018 - 09:49 (Reply to #3)
Val
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Sadly there is no guarantee that the GONB's will work, when they will work if they are going to, and how long they will work for.   Again with verapamil, some get an effect at low levels, the majority have to wait at least a few weeks before they start to work and for about 15% of sufferers they may not work at all.  There is a 'protocol' that most neuros use for preventive meds, starting with the verapamil and going on thru those listed on our treatments page.  CH is totally unpredictable and is the closest thing to a designer disease there is.  No two people suffer exactly the same way, or get the same reaction/non-reaction at the same time.  The only common factor is the appalling pain.  

Val

Thu, 09/08/2018 - 11:52
arualno1
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Hello,

I am going for my second block today. The first one took me about two weeks to take effect (I am also on Verpamil). When I said it took effect I got two days of complete pain free which was amazing and two weeks of manageable pain with the one Cluster every few days. This might not sound encouraging but for me it has felt like a step in the right direction. I am hoping that this second one will continue to work. I hope your treatment plan works for you. Stick with it (by the way I'm new to this if you haven't guessed, this is my first cycle of CH and it has lasted so far 15 weeks). 

Tue, 21/08/2018 - 08:53
NG
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Joined: 06/07/2018 - 14:02

Hi. I had nerve block a couple of years ago. It took a few days to take effect and then lasted for a few weeks. For me, though, it wasn’t worth the trauma as I am needle phobic and passed out and was unwell after the procedure. Have recently started verapamil but jury still out on that one as struggling with side effects, including headaches!!

Fri, 24/08/2018 - 11:57
Ihpatterson
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Joined: 27/05/2017 - 17:40

Verapamil is a calcium channel blocked. This raises two considerations-

Do NOT add this to other calcium channel blockers prescribed for hypertension.. This may cause hypotension.

There are other calcium channel blockers, Felodipine, Amlodipine or the latest one, lercanidipine. I do not recommend Lercanidipine as my wife and I were put on this for hypertension and found it ineffective over 24 hours as it’s plasma half life is only 9 hours and it has worse side effects than the older drugs. ( probably Lercanidipine is recommended by the NHS because it is cheaper despite its side effects and ineffectiveness over 24 hours)

So, has anyone tried the other calcium channel blockers just for CH?

Mon, 03/09/2018 - 09:54
Val
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Not as far as I know, neuros always go for verapamil as opposed to the other types.  One thing also to bear in mind is that the slow release or modified release verapamil [usually 160 mg dose tabs] do not work in CH.  It has to be the standard BP version of 80 mgs or 120mgs.  I'm not a pharmacist, but I do know that it is something to do with slow release content.  

Val

Fri, 02/11/2018 - 10:57
Lorraine
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I have chronic SUNCT,  a cousin of CH but with no pain-free days, and am awaiting a Lidocaine infusion at King's. (I also suffer from migraine). In the meantime, I have had a second GON block. The first didn't help and made things worse for a while.  But this one, which was far more painful at the site of the injection in the hours after I had it done, seems to have halted my stabs of pain. It's only been a day or so but has anyone seen a relationship with the discomfort of the procedure and the effect afterwards?

Tue, 06/11/2018 - 09:21
ElizabethK
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Lorraine, I have had many blocks done over the years and each has had a different level of discomfort afterwards, but I have never correlated the discomfort and effectiveness for me!  However, I have found a small link for me between the person who does it and the length of effectiveness, but it is tenuous!  I sometimes wonder if our nerves are intelligent and move away as the needle goes in so that affects the effectiveness of the block, but I just know every time is slightly different!  I am just grateful for any pain break however long or short it is!

Tue, 06/11/2018 - 12:56
Paddy G
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Hi I had a nerve block roughly 4 years ago for two days the pain eased a little maybe a 4 out of ten compared to most days being an 8 to 10.But then the beast of pain returned iv since been left with horrendous pain at the base of my skull where the injections were. Maybe im just one of the unlucky ones. Anyway i hope you guys having this done for the first time have better luck. My heart go's out to any one suffering this horrific pain.

Thu, 08/11/2018 - 11:35
Val
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Hello Paddy

Sorry to hear the aftermath of your GONB left you with pain at the injection site - have you got back to the GP/consultant/nurse who did it?  From what I can gather from other sufferers who have had GONB there is sometimes a little discomfort for a few days at the injection site, but I've not heard of it going on for as long as yours.   I'd suggest talking to the person who did it and your neuro [if its not the same person!].

Good luck

Val. 

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