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Occipital Nerve Block

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#1 Fri, 27/07/2018 - 09:27
cmcgrory
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Last seen: 2 days 10 hours ago
Joined: 02/07/2018 - 13:44

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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Last seen: 20 hours 19 min ago
Joined: 21/03/2012 - 15:16

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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Last seen: 2 days 10 hours ago
Joined: 02/07/2018 - 13:44

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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Last seen: 20 hours 19 min ago
Joined: 21/03/2012 - 15:16

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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Last seen: 6 days 19 hours ago
Joined: 27/05/2018 - 16:35

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). 

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