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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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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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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. 

Mon, 28/01/2019 - 14:20
cmcgrory
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So I had my third nerve block last week but it was a different injection this time. It had no steroids in it and a double dose of local anaesthetic. It was also extremely painful compared to the usual ones.

Has anyone else had this and is it a one off? I was in a lot of pain (before from CH and after from the injection) so never got round to asking why this one was different.

Thu, 07/02/2019 - 23:09
DavidH 7
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Had two injections in my neck and one above my left eye yesterday ... and have been pain free since. 

I think I can kind of feel a very mild shadow every now and then but I may be imagining this. 

I must confess that I've felt strangely bemused that I've not had this treatment in previous years. 

Fri, 08/02/2019 - 18:29
DavidH 7
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Had 36 pain free hours, following the injections ... and then have had three attacks today.  Hmm. 

Was hoping for *weeks* without pain. 

Mon, 11/02/2019 - 18:51
DavidH 7
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So ... any advice welcome on a next step?  Repeat the injections, maybe?

Sat, 16/02/2019 - 21:57
DavidH 7
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How strange ... After my the injections, I had 36 pain free hours followed by five days of "back to usual" (1-6 attacks) Cluster Headaches ... and now I've had 72 hours without attacks.

My episdoes can last up to 3 months but am currently not even at a month (though it has been a strange episode with the pain ramping up quickly and more frequently).

Fri, 22/02/2019 - 20:43
DavidH 7
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How strange (continued) ... Since my last post, I'm still relatively pain-free (I've had some pain but it has been managable without the need for Sumatriptan or Oxygen).  I wonder if this means the injections worked?  On the one hand, it doesn't really matter what has worked but on the other it would be nice to know (to do the same next episode).

[As a matter of interest, this site seems very quite ... Is everyone on Facebook, these days?]

Fri, 22/02/2019 - 23:29
DavidH 7
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*Quiet*, obviously.

 

Mon, 18/03/2019 - 09:35
Val
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Hello David

Apologies for lack of responses!  Somehow I had turned off my  notification for posts on the forum.....   Yes it is quiet since the advent of Facebook - not my favourite place, and I'm careful about what I put in posts, you never know who is reading them.  At least in here you can only post if you are a member and you know you will get genuine responses.  The forum is password protected, as in the past when it was an open to all forum, we got sickos who thought it was fun to crash not just the forum but the whole site, so to protect sufferers - who are already very vulnerable - we made it password protected.  I don't know about you but £13 a year for online security is well worth it.  We have in the past had comments on FB and online forums about how we have the nerve to charge people to join the organisation and our answer to that is the whole of the site is free to read and download apart from the forum; we'd never deny sufferers of such an awful disease access to information that could help them.  And most people pay more than £13 A MONTH for their mobile phone contracts.  Maybe it's just me........       Sorry rant over!

Val

Tue, 19/03/2019 - 21:20
DavidH 7
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Thanks Val.

Since diagnosis, I've found the forums invaluable and have really, really appreciated the advice/support.  I have to confess that it bothers me that the forums are so quiet - this is the first year that I have sometimes felt as if talking to myself. 

I feel very reluctant to post about "health" on Facebook though perhaps I am being naive. 

Thu, 21/03/2019 - 16:52
Val
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There is a Friends of OUCH page which people post on, and it is a closed group. 

Val

Tue, 02/04/2019 - 17:29
Doodles
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Hiya 

thanks for this thread I found it interesting as I’m currently trying to decide if I should accept my gp’s offer apparently my gp is qualified to do the nerve block he said it’s only himself and Doctor Tiagy from Glasgow that do them just now.  I am just a bit worried I make things worse. Any advice is grateful so thank you for this thread. Pain free wishes Sharon N 

Wed, 03/04/2019 - 11:09
Kit
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I’ve had two GONB, both at the pain clinic at St Thomas and the first one worked the second did not. The first one was at the end of a 3 month bout when I was being treated with Topiramate and the second within a week of starting a bout with no other meds in my system. I think the second block was overwhelmed to be honest. There was a small break of about 14 hours then back to normal ECH activity with 6 headaches per day. I’m now on Sodium Valproate and Melatonin and have been for the last month or so.   I’m pleased to report that this has been really effective and I’ve pretty much been pain free for the past 2 weeks. I’ve returned to work much quicker than in previous bouts. 

Tue, 09/04/2019 - 00:07
VickieJayne
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Hello All. I'm new to Ouch. So please bear with me. I am waiting for my first GONI but am absolutely terrified. I watched it on Youtube and . . . well - phew i don't know what to say ! I am not bothered with needles at all just the feeling ( or thought) of the actual liquid been injected in. I'm absolutely fine with extracted fluids eg blood tests but my gosh i just can't grasp the thought of this. Any advice please. Blessings x

Tue, 09/04/2019 - 07:41 (Reply to #25)
Kit
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Well for one thing you can’t see what’s going on if that helps. It’s a mix of local anaesthetic and steroids so it gets numb quickly and tbh neither injections hurt. As always it’s a balance between short term discomfort v ch and it’s always a simple choice for me.  All the best. K

Wed, 10/04/2019 - 19:39
DavidH 7
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Vickie - My slightly flippant response would be that the injections feel like *nothing* compared to a cluster headache.  I had two injections in my neck and one above my eye.  I have to confess being able to see the latter felt a bit weird but it was with such a fine needle I hardly felt a thing. 

Wed, 08/05/2019 - 16:46 (Reply to #27)
ithomas2011
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Hi David. Just to be sure, these were which kind of medication, please? Thanks, and it's great that it's worked for you. Idris

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