nerve block

Hi Carol,

For me personally I have had a good response with the nerve blocks - I am assuming here that you mean the Greater Occipital Nerve Block?

I have had a lot of them over a long period of time and have looked forward to the relief I would get (if only for a short period of time) and once it did not work and only once it made things a little worse for a short time.  Overall it was very good for me, but not everyone has the same experience.

take care

Liz

Hi Carol

Likewise, my experiences have been extremely positive.

On one occasion a GONB blocked out all pain for 3 weeks which was incredible.  On another occasion the results weren't quite so good.  It seemed to block most of the pain for about 9 days, which was still gratefully accepted at the time.

As you will have been told there are no guarantees, and sometimes it can lead to things getting a little worse. Medical professionals have to inform you of the worst case scenario and hearing that in the state we are in can tend to put you off a bit.

Overall, I don't think twice any more. It's a painless and straightforward procedure (compared to CH) and the upsides have far outweighed the downsides.  However, we are, of course, all different and what works for one may not work for another.  If it works on one occasion it doesn't mean it will work on another.  Could I make this explanation any more confusing!!

You have to be a bit patient with this.  I frequently experience some worse (if possible) pain during the first and last 24 hours. 

Apparently, even your GP can carry them out.  However, personally I would only want this completed by someone who specialises in this field.  I have mine carried out by Dr Juana Marin in London.  It's about a 350 mile round trip for me but it's worth it.

Best of luck with it Carol

Sean

Good luck with your GONB Carol.  I had it once only, at Dr Matharu's clinic at Queen Square London.  The procedure was virtually painless but it didn't work and unfortunately made my clusters worse over the following few days and there were no beneficial effects whatsoever.  However, I do believe most people benefit and I've got my fingers crossed for you!

Martin

had it twice at queens sq,  painless both times,no side effects either but did not help with chronic clusters.

Hi, I have had the nerve block done on numerous occasions but never had any benefit but I keep going back and having it done again just in case this time it works! Good luck with your treatment.

Tracy

Hi I had the injection many times at Queens in London as I read others have also most times you get short term relief occasional nothing and very rarely it can make it worse.Its like anything i thik if you are like the rest of us you will try anthing to"make it go away"I also had the multi cranial nerve block which as it says is 12 ,that worked brillantly.Goodluck

Hi

I am now fully diagnosed  'Severe chonic cluster headache, Chronic migraine and co-morbid restless legs syndrome'.

Yesterday my consultant injected a 'nerve blocker' into the back of my head to try to deal with the migaines I suffer.  Unfortunately I forgot to ask how long before it works.  I was woken at 5am with a really severe one.  Is this normal?  I expected an immediate relief.  Before the treatment I had a really annoying back headache which, miraculously disappeared soon after the treatment! 

Initially I am also to be prescribed oxygen with sumitriptan injections to cope with the severe CH attacks and if all else fails Verapamil.

It appears I am going to be kept busy this summer........most annoying because we had to cut our last break short due to a worsening in my condition. 
 
Looing forward to hearing from you
 
Jeannie

Hi Jeannie

I had GONB for my CH a few years ago and I was warned the attacks might get worse before they got better. That night I had one of the worst attacks ever but after that they started to subside.  I think it's different for everybody though.  Good luck, I hope you get the benefit of it soon.

Dorothy

Hi Jeannie, verapamil is a prophylactic and should be taken in conjunction with the abortives (injections & O2). Verapamil (not the MR or SR version) is taken in increasing dosages until,hopefully,you receive some beneficial effect.

Thank you Dorothy and Colin for your kind replies.  It's allvery new to me at the moment and I have lots of q's running around my head.  My main fears at the present are about oxygen.

1. How big and heavy is the complete package?

2.  We don't have a car and use public transport to visit our family the furthest being 300 miles away, will coach/train and boat companies allow oxygen on board?

 3. We have a narrowboat which is our only holiday destination often for many weeks, would I be allowed to take oxygen on board and how many attacks does a tank hold? ( I hope this makes sense)  Also if I ran out would I be able to get a refill elsewhere in the country?

Sorry to bombard you so early, I have tried to find answers on line but nothing appears to be easy to find......

Regards Jeannie

Hi Jeannie

The complete package is usually a 2000 ltr cylinder with mask and tubing.  This is big (about 2ft 6 high and weighs a fair bit), I keep mine in the bedroom at home.  Portable cylinders are a bit of a problem to obtain, you have to see either a respiratory nurse or respiratory consultant to obtain portable cylinders, your GP can refer you for this.  The usual portable cylinder is between 400 and 450 litres and comes with a back pack to carry it around.  The number of attacks you can treat depends on the flow rate and length of time you are on it, if you use 8 litres per minute and abort your attack in say 20 minutes  you will use 160 litres of oxygen, so a 400 litre cylinder will only treat two to three attacks.  You can get 600 litre portables, but I'm not sure if every oxygen company has them available.  If you are going on holiday in the UK, call your 02 company at least two weeks before you go and tell them and they will arrange for cylinders to be delivered to your holiday address (there is a reciprocal agreement between all the 02 companies in the UK), that would apply to both the static [ ie: big ] cylinders and the portables, so perhaps you could order two or three portables for your holiday address.  As to who will allow you to take oxygen onto their boats, holiday premises, hotels etc, it varies.  Generally speaking taking portable oxygen on public transport is not welcomed!  You can take it on trains, but you have to book your seat in advance.  You cannot take your 02 on the London Underground or London buses.  You cannot take oxygen cylinders onto a plane. I would suggest you speak to the canal boat hire company and explain that you have a medical need for oxygen and would you be able to take it on board. 

Hope that helps

Thank you so much for your reply Val.

I have looked into it a little further but the size of tanks and restrictions appear to be hiding away in some dark recess of the www.

We own the boat and normally tour North yorkshire, Chesshire and the  North West for about 8-10 weeks in the summer months.  Storage of large tank/s would be no problem and it will be approximately 30ft distant from our propane tanks (encased in solid steel housing on the outside of the boat) and nowhere near any naked flames (Gas cooker and wood burning stove).  We would, of course, need to inform our insurers and this might be the sticking point along with the oxygen company. 

Oh well let's just hope for the best.

I'll post a query on the general forum to see if anyone has any experiences of holidays on narrows and oxygen supplies.

Regards Jeannie.

Hi Jeannie

Take a look at this link and you'll see a picture of the 2000 ltr cylinder and the info below the pic gives the dimensions:  http://www.baywater.co.uk/patient-carer/our-therapies/oxygen/equipment/c...

Hope that helps!

Val

Just FYI, I've just spoken to Transport for London and you are allowed to take and use oxygen on the underground without having to declare it or asking for permission.

Johan

Hi, Im new here but went up to London, Queens Square last week and met the most lovely consultant who mentioned I should have this Nerve Block. It sounds very scary and painful (obviousley not as painful as my clusters, but its a needle which i hate!) can people who have had it tell me more about it and if it works and for how long. I read somewhere that it only works for a few days up to a week - if this is the case i wonder if it is worth it? 

thank you 

Hi,

It is definitely worth a go. For me personally I didn't really feel much a small sting maybe that lasted for seconds. With the nerve block I had at least 2 weeks pain free sometimes longer sometimes shorter, but for someone who is in pain all the time, having daily exacerbations of that pain 2 weeks is a lifetime! I used to look forward to having that pain break. (I have an implant now)

Now some folk get a much longer period either pain free or attacks reduced in strength and frequency. Everyone reacts differently to this, you don't see the needle as it is behind you, and it only takes a few moments to do, and the potential relief is so worth it! There is a little bruising for a few days afterwards in the back of the head but it doesn't last long. Give it a go!

take care

Liz

I recently had the multi nerve block about 18-20 injections, stopped clusters for a week, but was hit heavily with migraines which filled in the void left by the clusters. Apart from the the jabs by the eyebrows which I found a bit painful, the other jabs were ok.

Carol

I had the procedure about 5 weeks ago.  Seemed to be reasonably effective for the first two weeks then back to normal after that.  Hope yours has given you some positive results.

Hi there

I've not posted before but I had two nerve bloc injections in the back of my head a week ago at the Walton Centre. I am a chronic sufferer and sadly the pain is now worse and different. There is still pain in my left temple and down the left side of my face but now also on the left side of my head down to the top of my neck. Also the pain is a constant thudding unlike the more piercing pain I've got used to (!) over the last 20 years and there's a weird tingling senstaion on the left side of my head. Has anyone else experienced this? Maybe the injections still have time to improve things but it doesn't feel like it right now....

All best to all

Mark