I only joined this forum yesterday, so my apologies if this question has been asked countless times before.
I have severe neck problems and occipital (head) neuralgia, and have tried acupuncture with no success, various medications such as gabapentin and pregablin which interacted with other medications and caused serious side effects, so these were discontinued promptly. Other pain medications such as codeine, tramadol and paracetamol cause side effects or interactions with other meds, and cannot take anti- inflammatories due to lung conditons. I am now on butrans patches but do not tolerate them well.
I have been booked in for a bilateral occipital nerve block on Christmas Eve, and just wondered if anyone had experience of this, how effective it was and if there were any side effects. I have attended the pain clinic once, and I am also due to have specialist physiotherapy.
Thanks for reading and for any advice offered.
Take care,
hugs from Huggs
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huggs
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The trouble with the patches is that they make me very nauseous and also cause vomiting after about a week or 10 days of using them. They do help initially but after a while I experience the above symptoms, and have to come off them for a while, until I am forced back on them as the pain gets pretty intolerable.
There are a lot of pain medications I cannot take, such as paracetamol, and codeine. I was prescribed tramadol and initially it helped a bit, but then had side effects and caused another condition to worsen. I do sympathise with my GP and consultant as their are so many medications I cannot take due to side effects or interactions with other medications.
Thanks for replying, and I am hoping the nerve block will give some relief for a while, although the consultant said I could only ever have 3 in my life, as the steroid injected causes some damage to the cartilage in the neck.
Thanks for the reply. Also the rest of my questions about existing meds has been answered in your posts below. Nausea is alas not an infrequent reaction to stronger pain meds.
There are only 3 choices. Suffer - not an option. Keep vomiting - not really good either. Keep changing the meds in the hope of finding one that suits better.
Have you tried DF118 instead of Tramadol? Have you tried Fentanyl patches instead of BuTrans? A couple to maybe talk with your Doctors about.
You are right in the fact that it is all about finding the right meds. As I have mentioned I do sympathise with my GP and consultant because it is difficult to find the correct med and balance, due to side effects and interactions of other meds.
Like many, if not all of you, my condition has been deemed not curable, so the consultant said if she gave me the strongest meds now, in 5 years time there would be nothing left for me to try, as I would become tolerant to them through time and therefore ineffective.
As far as the DF118 goes it contains codeine, so that is out. I was initially started on fentanyl but could not tolerate it at all, so was put on Bu-trans patches which are a bit weaker than fentanyl. I also asked for antisickness meds which have helped a bit.
At the moment I am swinging between pain or nausea and vomiting, which is not great, and why I am hoping that the nerve block will help.
Its a bit of a balancing act at present, and she did mention oxymorph and oxycodone or something like that, but did not think I would be able to tolerate them. Its just a case of trial and error.
To be honest, ice is pretty good but not practical all the time, but do use it when possible.
Thanks again for replying, and at least I know that people on here understand what nerve pain, and other types of chronic pain are like. Unfortunately, pain is no stranger to me, and after a while you just have to accept it, and try and focus on other things, but when it is really bad you can do nothing about it.
There are plenty of non meds tricks. Meditation to zone out of the pain. Limited success for me. Distraction is my strongest suit. Audio books play all night in an aid to divert the mind if I can't sleep or if I wake in pain. I also find it a more productive way of actually reading books during the day. Focusing on reading printed matter has become very difficult. Tens machine is useful for disrupting nerve pain provided you don't use it too long. I find switching frequency after 15 or so helps. Rib
Unfortunately the tens machine is not permitted in my situation for two reasons. One being that the patches would need to go on my neck where they are not advised to go, according to the manufacturers and the consultant, the other being my epilepsy which is caused by the electrical circuits in the brain going a bit haywire ( a short and basic explanation) and so to add electrical impulses in an area so close to the brain, and brain stem is not advisable at all. I asked if I could have one session under medical supervision to try it, but got a flat no.
I have been thinking about meditation, and do try distraction things but when nerve pain is at its worse and goes on for hours at a time, believe me, nothing works in terms of distraction.
I have not given up at all on learning other ways to deal with it, and will be looking into it further.
If the pain is too bad to keep me off sleep but not bad enough that I am in tears then I either watch TV or go online. I love the sounds of nature, and use to have a website on my favourites bar where you could choose from all manners of sounds and mix them up to your own choice, so will reinstall that when I can remember the name of it.
I see there are many books available from pain concern and would be interested in hearing if anyone has found any of them beneficial.
I am pretty stubborn and generally positive and not so great at asking for help but being stubborn is helpful in these situations I think.
Rib, I must give you a big thank you and extra special hugs for your interest and offering suggestions and thank you for caring and your support too.
On another matter I am due for a scan on the blood vessels on my neck this Thursday, but looking ahead the forecast is bleak here in terms of wind so it is likely the ferries will be off, unless they sail to another port if it isn't as bad as it was last week.
Hope you are doing ok yourself and have recovered after your outing, we all need these treats even if it means you are exhausted afterwards.
I've had bilateral lower lumber nerve blocks if that helps?
I was really frightened when I went in for the procedure but it really wasn't anything worse than mildly unpleasant - your surgeon should use plenty of local anesthetic before injecting into the nerve roots. It takes 3-5 days for the effects to fully tale and the effects are different for everyone, I'd spoken to a handful of people from my pain clinic group about it first, 2 of them had had the treatment and neither found it to be of help so I want expecting much but I've got to say, I found it a total godsend!!!!! I had my procedure on 1 July this year and have only recently started to feel the occasional hint of the old nerve pain!! I'm still on strong pain relief for the muscle and skeletal pain, but none of that has ever been as bad as the nerve pain so I'm super happy with it and would recommend the treatment 100%!
Thanks a lot for replying and its good to hear that your lower lumbar nerve block worked really well for you. My consultant did explain that the nerve block procedure worked for some people but not others and they have no explanation for this.
Out of interest did your surgeon tall you that you could only have this procedure done 3 times over the course of a year, and then no more, ever? I am only asking because that is what I have been told. It may be more difficult around the neck area for some reason, and I do agree that nerve pain is the worst of all. I cannot take drugs such as gabapentin, which as you probably know is an anticonvulsant as well, and I am already on two anticonvulsants for epilepsy, and adding a third to the mix, caused me to have multiple seizures over 2 days, and I not prepared to try them again.
Thanks again sharing your very positive experience, which has given me a boost, and I hope mine is as successful as yours.
I fully intend to go ahead with the procedure if the weather permits, ( I live on an island, so the ferries go off frequently at this time of year) and patient transport doesn't cancel the appointment.
Take care, and I hope your back doesn't get too bad again.
hugs from Huggs xx
I've had it done twice now and it's been a complete godsend! It took away my constant arm pain after about a week and lasted around 6 months the first time. The second it took a little longer to work, but I was stupid and overdid things when I got home! 3 months on, I'm back to being more or less pain free and best of all, no migraines, which I suffered badly with before the nerve block. As for side effects, the only problems I had afterwards were pain until the nerves settled down, lets face it, if you'd had needles and stuff stuck in you, you'd be jumping around wouldn't you? LOL But seriously, you will not regret it!
Great!! Another positive reply, and just what I need to hear. You will see from my other replies that the consultant explained it didn't always work, and you can only ever have 3 nerve blocks in your life, in the neck area, so I am really desperate for this to succeed, as finding medications are extremely difficult for reasons such as side effects and interactions with other treatment.
I have neck and head pain, and find myself in the ridiculous position where heat helps my neck, and cold helps my head!! I must look a pretty sight (not !! ) at times, as I have a heated wrap around my neck, and ice packs on my head, and all head in place by a hat and scarf. LOL
Sometimes I just have to laugh as I pass my hall mirror. What a state! ha ha
Thanks so much once again, and I am pleased it worked so well for you. I reckon the pain after the procedure will not be any worse than I am already experiencing, and if it helps, fantastic.!!
Yes my pain specialist warned me that they might not work, but, he never said I could only have 3 lots in a lifetime! I'll be having my third lot in the New Year (See him March), so I'll ask. I seem to remember him saying at my first appointment that you could only have 2 lots a YEAR, which is fine because they seem to last 6 months anyway.
I know what you mean about heat and cold, the same worked for me. Since having the block I haven't had one migraine, not one, and I used to get at least two a week before, so it was definitely from nerves trapped in my neck! Two birds, one stone lol The things we do to alleviate pain eh? I've toyed with stopping the Morphine, but we shall see!
Thanks for getting back to me. That is interesting that your consultant told you that you could have two injections in a year, while mine said I could have a maximum of three in a year, and then that would be it.... no more ever because it was not curative. However, since posting I have received a copy of the letter sent to my GP ( don't know if all pain clinics do this) and in it she says that after my first injection I would be able to get two more, and that she has warned me that this treatment is not life long, but no mention in the letter of only being three ever. I will clarify when I get my first treatment on Christmas Eve, assuming I manage to get there which is difficult at times due to living on an island and relying on patient transport.
I am so pleased that this procedure worked for you, and you are so positive about it. So you got it for migraines? Do you mind me asking if you have other pain as well, I only ask as you are still taking morphine, which I hope to be able to stop if the procedure works. I am also going to get physio from a pain specialist, which I reckon will need painkillers in order to get through that.
Good luck in remaining pain free or at least a lot less of it. Your quality of life must have improved dramatically without migraines so no wonder you rave about the procedure, and I just hope it works as well for me too.
I have this pain too but it comes in bouts. I wear a collar at night which helps somewhat. When I have that pain there is nothing that takes it away, I am taking Tramadol 100mg slow realise topped up with tramadol 50mg some times taken at two at a time. I also take pregablin 100mg twice a day. None of these take the pain away so I also take two pink migraleve. The pain still lasts all day, it is a pain that is there from the minute I wake up and I can not do a thing when I have it. I will be interested how it goes, I noticed that jaynep has had the nerve blocks and they work. I am waiting to go to pain clinic so will ask for one too. Do you have this pain constantly? If you do I am sure the nerve block will help. Good luck I really help that it brings you much relief.xx
thanks for taking the time to reply. I also wear a collar much of the day and night, which the consultant understands. At first the physiotherapist said not to wear it too often as it causes the muscles to weaken, but it got to the stage where even the most gentle of movement made the problem worse. I am trying to do without it for periods of the day, when I am not moving around too much, but at night if I try to do without it, I am jolted awake as I move in my sleep and have to put it on again.
I cannot take meds such as pregablin due to epilepsy as I am on two anticonvulsants already and tried adding a third which caused multiple seizures over two days. Tramadol worked a little bit initially, but then caused nausea and vomiting.
The pain is pretty much constant, although sometimes I get relief for a few hours and back it comes! I do not get out much and when I do I have to travel by taxi, and going over each bump is agonising. I am presently on Butrans patches with a gradually increasing dose by 5 micrograms each week and they do help a bit, but then the nausea and vomiting start.
If you are having the same problems as me, then it is certainly worth asking for a nerve block, and I will be sure to let you know how it goes, although it has worked wonders for Jayne, but the consultant warned me it does not always work, and they do not know why.
I have found that ice packs help with the nerve pain, and I do understand what you mean when you say when it is at its worst you can do nothing. I hate saying this, but I have been in tears with it at times, and really hope the nerve block helps.
Good luck at the pain clinic and hope something can be done to help you too.
May i ask if u r still taking the gabapentin and if u r what is the dose? I had rfa done prior to surgery, radio frequency ablation where the nerve is burnt/blocked, it works for some people and can last for 6 to 12 months, it only lasted 3 for me and pain came back
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