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OCCIPITAL NERVE BLOCKS - CAN ANYONE HELP?

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#1 Tue, 02/12/2014 - 15:57
howardr
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OCCIPITAL NERVE BLOCKS - CAN ANYONE HELP?

Hi I'm Howard and I've just joined the forum and am looking for some advice.

I've suffered from chronic cluster headaches for about 10 years, before that they were episodic.  I take verapamil and Sumatriptan but unfortunately they're not having much of an effect on my headaches now.  

Early last year I was having up to five or six a day - really severe ones so I saw a neurologist in the National Migraine Centre in London last August, She gave me an occipital nerve block injection and within days my severe headaches had stopped and I had a good few weeks pain free. 

My problem is I'm from South Wales but I  work in the Middle East and am only home three times a year and I can't get the injections out here. Im trying to find a neurologist in South Wales, Bristol or even Birmingham area that can give these nerve blocks. I've contacted Spire Hospital at Cardiff but they don't have anyone who does them. 

Has anyone else had a nerve block at a hospital which is fairly local to me?

 

Tue, 02/12/2014 - 19:02
Val
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Hi Howard

I think I'm right in saying that Dr Pickersgill at UHW  in Cardiff has a headache clinic and I THINK  they offer GONB [greater occipital nerve blocks].  The next nearest would be if you are prepared to go north and go over the border into Liverpool to the Walton Neurological Centre and Dr Nick Silver, who is a great friend to OUCH and does do the GONB's and also the multiple nerve blocks.  One thing you might consider IF you are overseas and are in bout is a short course of high dose steroids which might keep you painfree for a few weeks, but there are no guarantees.  You could build up your supply of Imigran injections before you go and take them with you overseas, taking your repeat prescription form with you and a letter from your GP/neuro saying why you need the Imigran njections with you [I assume you have injections and not tablets - tablets won't work, not strong enough and anything taken by mouth has to be absorbed by the gut before it starts to work in any case.  Go to your GP in any case and get a referral [private or NHS] to either Dr Pickersgill or Dr Silver so that you have ongoing neurological care in the UK.  There may be other treatments that they suggest - after all they are neurologist, I'm not!   

I'm in Tenby by the way, but I go to London for my  neurological care. 

Val.

Wed, 03/12/2014 - 17:15
howardr
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Hi Val

Thanks very much for the info. My wife rang Spire in Cardiff and the lady she spoke to spoke to said that she thought Dr Pickersgill may do them but she never got back to her. She said she'll ring again tomorrow as he's going to be the most local. Its bad that we in Wales have to travel to London or Liverpool for treatment though isnt it?

I'm away for four months at a time so my wife gets my repeat prescriptions and sends them out to me but she also buys Sumatriptan online and sends those out to me too. I work in Oman in the Middle East and they're very difficult to come by out here even though they give me a prescription at the hospital the chemists don't often stock them so I have to wait for them to be ordered in and being Oman it could take weeks! 

The Neurologist I saw in London suggested I have the injections and wrote to my GP telling him so but he still keeps prescribing the tablets and of course as I'm out here I can't get to see him. She also told him that I needed Verapamil but not the slow release ones. Again he keeps prescribing the slow release!! Last time I was at home I tried to make an appointment to see him to explain but there were no appointments for two weeks and I had to go back to Oman.

I have taken prednisolone steroids before - I had three courses of them last year and the Neurologist said that I should not take any more as they have side effects but I'm going to have to take them again as they're the only thing that brings any relief.

It must be difficult for you travelling to London from Tenby - the last twice we went we stayed overnight - its very expensive as the injection was £200 itself.

Have you tried the nerve  block?

Thanks again for your help.

 

Wed, 03/12/2014 - 18:11
Mr Git
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Hi Howard

I live in Shropshire and I choose to travel 180 miles to London to have a GONB for the simple reason that if I'm going to go to the trouble of getting it done I want to give myself the best chance of it working.  There are no guarantees that it will work, even if it is done by the best person.

My consultant is Professor Goadsby who is based in Denmark Hill, South London.  Dr Juana Marin kindly did my last GONB.  I think it is worth making the effort.  Juana did a great job.

Despite there being no guarantees I have been lucky so far.  My first one lasted 3.5 weeks, my second one lasted just under 3 weeks.  It was a blessed relief and helped me get through my bout.

Best of luck with it and be sure to point out BNF 4743 to your GP next time you have the pleasure.  My baseline treatment is Sumatriptan injections (Sun Pharmaceuticals) and oxygen (administered via a Demand Valve).  Couldn't cope without both of them.

ATB

Sean

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Wed, 03/12/2014 - 23:27
Phil
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Sean.
I don't think quoting the BNF will work if the Doctor is ignoring the Neurologist.

Howard.
It's an all too common problem. Tablets are cheaper than injections.
When you do manage to see your Doctor, take a cricket bat:
See if you can get the body completely flat.

Thu, 04/12/2014 - 05:41
Mr Git
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As Phil says, the reason your GP is prescribing the tablets is because they are significantly cheaper. I don't have up to date figures and the Beast ensures my brain is frazzled, however, off the top of my head I believe an injection used to cost about £22, whereas a whole box of tablets costs very roughly a couple of pounds, hence you can see the appeal to a GP who is focused on driving prescription costs down. The only problem is that injections work whereas tablets would never be capable of entering your system fast enough to abort a CH attack. 

Perhaps someone could provide us with up to date data regarding costings so we have the current facts to hand? Whilst on the subject (apologies for hijacking your thread Howard), does anyone know if Sun Pharmaceuticals ever progressed the idea of producing a 4mg injection? It seemed like a no brainer to me, giving us the option to inject 3 times a day instead of 2 and presumably costing about 75% of a normal 6mg injection. Surely they would have been leaning against an open door??

In the meantime Howard, I have two suggestions which amount to a metaphorical cricket bat, thus avoiding a charge of Grievous Bodily Harm! :)

I would consider trying to see Professor Peter Goadsby and Dr Juana Marin. When the Prof and Juana ask a GP to do something it usually gets done. For the few who choose not to they encounter the might and full force (albeit tightly packaged) of Juana, which, let's say, clarifies the position! :bigsmile:

Secondly, I would address the issue of medication cost head on and ask your GP to confirm that he/she is basing their decision on cost. They obviously won't confirm that, but carry on anyway and explain that you are similarly cost conscious and want to ensure that you are acting in a responsible manner, and as such you are requesting the generic version of the Sumatriptan injection by Sun Pharmaceuticals which is cheaper than the GSK version (Imigran). You may find they appreciate your grasp on the situation.

If that fails, give Phil a call....:D

By the way, there are several other benefits to using the Sun Pharma version, but for now, back to sleep (hopefully)! ;)

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Thu, 04/12/2014 - 10:50
duetto
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A letter from the neuro direct to gp might help, had this once when the gp/pct wanted to replace imigran jabs with tramadol tablets, worked very well even got an increase in the prescription from 6 to 12 a time.

Fri, 05/12/2014 - 10:47
Mike
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"does anyone know if Sun Pharmaceuticals ever progressed the idea of producing a 4mg injection"

 

Believe it or not Sean this is still progressing after four years! The difficulty is the cost of the licence.

 

Imigran injection £22.50 each, (max 2 per day) Sun Pharma  approx £20.50 (max 2 per day). The generic form of sumatriptan tablets, less than four pounds for six, (max 3-4 per day depending whether they are 50 or 100mg).  Sumatriptan nasal spray  £8.00 each (max two per day), the sprays are in the BNF but are virtually useless, they take up to twenty minutes to work if they work because most of it goes straight down the throat as many of us get a blocked nose during an attack. Oxygen varies from £8.00 per day for high flow to less than a pound per day plus the one off cost for the demand valve. (Unlimited O2 treatments)

 

The question you should ask your GP Howard is given the pill is useless for CH and is not a recommended treatment what altenative can he offer? The answer is there isn't one. Also ask your GP, would he prescribe the pills to one of his family if he saw them writhing in agony during an attack when he knows the only correct recommended treatment would abort the attack in less ten minutes. Its like a pregnant mother in labour being refused gas and air, which from all reports our female members say isnt as painful as a CH attack - Frankly its obscene. 

When he says, as ignorant GP's often do, which website did you get this information from because its usually rubbish, tell him OUCH is on the NHS website with a link to us, this at The NHS's request.

 

Sorry to waffle on,

Mike Chairman OUCH UK

 

 
 
 
Chairman OUCH UK

Fri, 05/12/2014 - 12:22
Mr Git
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Thanks for coming back to us with those figures Mike, really useful to know and have available for any GP questioning costs.

If Sun Pharma knew what an enormous difference the ability to take 3 injections per day as opposed to 2 would make to a CH sufferer who experiences up to 7-8 attacks per day they would go for the licence regardless of cost. We would all switch to that version overnight and they would take the GSK slice of the market.

If they could price it at £15 per unit surely everyone in procurement would be beating a path to their front door?? Imagine their sales team being able to headline "it's £7.50 per unit cheaper than Imigran!".

No brainer....open door.....is it me??

By the way, you never waffle mate....unless you're talking about Manchester City ;)

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Fri, 30/01/2015 - 10:49
howardr
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Hi Sean

Thanks for the info. I'm working in Oman at the moment and I'm only in the UK three times a year. I'm due home in April so I'm going to try and see Professor Goadsby. How do you get in touch with him? I can't find any contact details for him online. Does he have a clinic?

My last block lasted for about two months and it was a blessed relief. I'm a chronic sufferer and I'm having them three of four times a day - some last for about two hours. Sumatriptan tablets - which are also very hard to come by out here sometimes help but not often, it depends if I "catch it in time". My wife buys them and sends them out to me along with my prescription because trying to explain Cluster Headaches to a doctor with very limited English who also doesn't understand the condition is difficult to say the least.

When I was home at Christmas I saw a new GP - she was very young and very arrogant!  I asked for steroids just to have a break for a week or two but she was determined not to give them to me. I asked if she knew what Cluster Headaches were and she said - of course its a migraine!!! I said try Googling Suicide Headaches. She prescribed them in the end after a long debat but said she wasn't at all happy to do so and I won't get them again! I'd like her to go what we go through for just one hour and then see if she changes her opinion.

Thanks to everyone for their replies too.

Howard

 

Fri, 30/01/2015 - 10:50
howardr
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Hi Sean

Thanks for the info. I'm working in Oman at the moment and I'm only in the UK three times a year. I'm due home in April so I'm going to try and see Professor Goadsby. How do you get in touch with him? I can't find any contact details for him online. Does he have a clinic?

My last block lasted for about two months and it was a blessed relief. I'm a chronic sufferer and I'm having them three of four times a day - some last for about two hours. Sumatriptan tablets - which are also very hard to come by out here sometimes help but not often, it depends if I "catch it in time". My wife buys them and sends them out to me along with my prescription because trying to explain Cluster Headaches to a doctor with very limited English who also doesn't understand the condition is difficult to say the least.

When I was home at Christmas I saw a new GP - she was very young and very arrogant!  I asked for steroids just to have a break for a week or two but she was determined not to give them to me. I asked if she knew what Cluster Headaches were and she said - of course its a migraine!!! I said try Googling Suicide Headaches. She prescribed them in the end after a long debat but said she wasn't at all happy to do so and I won't get them again! I'd like her to go what we go through for just one hour and then see if she changes her opinion.

Thanks to everyone for their replies too.

Howard

 

Fri, 30/01/2015 - 11:06
tangerinearmy
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i know i should nt say this but lets face it the medical profession offer little help and most of the drugs on offer are seriously scary.

there are other options 

 

the vit d regime is working really really well for lots of people

having the correct 02 set up

and of course the the dreaded clusterbuster method (my fave) which unbelievably some dismiss without reading into it properly 

 

good luck

Fri, 30/01/2015 - 16:35
lakefamily
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What's the vit d regime?

Sat, 31/01/2015 - 00:52
tangerinearmy
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lake family

 

read all about it and dont let ignorant doctors who dont suffer put you off.

 

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404

Sun, 01/02/2015 - 09:52
Mr Git
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Hi Howard

Best if I don't post the Prof's contact details on this forum. I will speak with Val and either I or Val will private message the details to you.

I'm obviously not up to speed regarding your condition, and I'm certainly no expert, but it sounds to me like your treatment plan would definitely benefit from some management by the Prof and Juana. It may be that sticking to an agreed regime may benefit you in the long run. I appreciate that is easy to say now when you are probably suffering, but short term pain may help long term gain.

Your GP may have a point regarding the steroids. I believe there is a limit on how often you can take them. Hopefully, someone with more experience will be able to advise you. What I can tell you is that I tried them once, and subsequently wished I hadn't. Although they suppressed the CH instantly the subsequent fallout/after effects dictated that it wasn't the right option for me (this was before I was under the care of the Prof and he has since explained why it was the wrong call).

Trying to treat your condition whilst working abroad sounds extremely problematical. I hope you get the advice you need. I will get back to you regarding the Prof's details.

All the best

Sean

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Mon, 02/02/2015 - 13:02
Mr Git
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Hi Howard

Just to let you know I have sent you a PM.

Sean

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Sat, 07/02/2015 - 21:27
Harrietjt
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Re tablets/injections/cost/GP's:

My husband cannot use Sumatriptan imnections safely so was given Zolmitritan (Zomig) tablets for ages. Then a nurse spotted that Cluster Heads are supposed to have the nasal spray version, not tablets. The nasal spray was much better (and much more expensive), but we then went round and round in circles with several GPs because they got caught up in the concept of Medication Overuse Headache. It seemed that no one got that this didnt apply to CH; we strongly suspected that doctors thought Cluster Headache was just a name we had made up for migraines!

Anyway, we learnt that the way through this nonsense is always to get the Neurologist to spell out in writing to the GPs what should be prescribed, and then when the GPs failed to follow the Neurologists instructions a written complaint to the Practice Manager works wonders.

Our practice manager called me to apologise and said this would be sorted out at the next Practice GPs meeting. I seem to remember asking her to tell the meeting that the CCH sufferers wife says 'if you don't like what the Neurologist has written - take it up with him; but until he has been persuaded to change his directions - FOLLOW THEM!' 

We do not have problems any more and my husband gets his two Zomig sprays per day. 

Best wishes to everyone

Harriet

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