I feel I've tried everything. What can I try next? Botox and Occipital Nerve Blocks: An overview

[Charlotte_NMC]

We are being asked increasingly about the relatively new injection treatments - Botox, and Greater Occipital Nerve blocks. For whom they are appropriate, these have changed headache treatment for the better. The problem of taking too many tablets has got a lot of press recently and patients are becoming more aware of how much is too much.

Migraine affects the head, so let’s treat the head, not the stomach!

To clear up any confusion here is brief round-up of what the two procedures entail with stories from two patients who have found them useful:

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BOTOX

What? Botulinum toxin, of which Botox is the best known brand, is given as a series of tiny (0.1ml) injections under the skin or into the muscles of the forehead, above the ears, and into the neck and shoulders. For headache, the usual number of injections is 31 to 39.

Who? Botox, is licensed for the treatment of chronic migraine, i.e. in people who for 3 or more months have over 15 days of headache a month, of which at least 8 days are migraine (i.e. headache plus other features). The UK licence is restricted to people aged 18 to 65; and NHS use requires that medication overuse has been addressed, and three migraine prophylactics have failed. These restrictions need not apply to patients paying for their own Botox at the National Migraine Centre.

Why? A trial of almost 1400 chronic migraine patients proves benefit; probably by gradually blocking the action of pain nerves (C-fibres) which release chemicals that perpetuate and amplify chronic migraine pain.

When? The injections are normally repeated after 12 weeks. The effect usually lasts about three months, though once the vicious cycle of chronic migraine is interrupted, Botox treatment can cease. Two treatments, 12 weeks apart, are sufficient for many people; some need to continue treatment for longer.

How effective is it? Three out of four people with chronic migraine benefit after the first or second set of injections. The most typical response is conversion from chronic to episodic migraine, which then needs careful management to prevent recurrence of chronic migraine. Episodic migraine (i.e. fewer than 15 days headache each month) has not been shown to respond to Botox. There are other botulinum toxins available but these have not been found effective in any form of migraine, so are not approved by NICE or used at the NMC.

What are the side effects? Side effects are relatively uncommon and always get better naturally in a few days or weeks. Each of the following affects one in ten or twenty patients: worsening of migraine; neck pain and weakness; droopy eyelids or eyebrows. The injections sting slightly, and there can be a little bleeding from the injection sites. Very rarely, patients are allergic to botulinum toxin. People with nerve and muscle problems, other than migraine, may be oversensitive to botulinum toxin.

GREATER OCCIPITAL NERVE BLOCK

What? A greater occipital nerve (GON) block is an injection of local anaesthetic and depot steroid (i.e. it stays at the injection site) around the nerves which supply the scalp at the back of the head.

Who? Any form of headache may respond to greater occipital nerve block. If the nerve is blocked it cannot carry pain.

When? Benefit begins between an hour and a week after the injection. If you respond well, we may recommend additional injections when symptoms return. With some exceptions, in any given six-month period, we generally do not like to perform more than three nerve blocks.

Why? The steroid reduces inflammation and allows the local anaethetic to have a lasting effect. This may in turn reduce pain, and other symptoms caused by inflammation or irritation of the nerves and surrounding structures. Part of the benefit is from interrupting the feedback cycle of pain in the trigemino-vascular pathway. If migraine is like a faulty fire alarm, GON block is like putting a sock over the smoke detector.

How effective is it? In a trial at the Institute of Neurology in London involving 100 people with migraine and cluster headache just over half of patients found some pain relief, and 22% of these were pain free for between 20 and 90 days.

What are the side effects? Serious complications from this procedure are very rare. However, as with any injection, infection around the injection site could theoretically occur, as can bleeding. The most common side effect is pain which is temporary. The injection is just behind the ear, and you can hear it happening, which is disconcerting. There is often some swelling at the injection site, and a few hours on numbness at the back of the head. Twice Dr Elrington has had patients faint during the procedure – fortunately both had a good response.

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Obviously here we are sharing the success stories with you. For a lot of people these treatments show little or no improvement but we feel it is important for those who feel they have 'tried everything' (a phrase we hear time and time again), that there are options.

The minimal risk of serious side-effects from these procedures compared to medication means that for many we think it is worth considering.

If you feel you have tried everything – make a list of exactly which drugs, at what dose, and for how long. Medication overuse (10-15+ days of acute or rescue mediation, with 15+ days of pain per month over at least 3 months) largely blocks response to other treatments and is a very common cause of treatment failure: previously disappointing medications can become effective a few weeks after addressing medication overuse.

Often doctors and patients do not use regular medication for long enough, or at sufficiently high doses. Never give up treating headache and migraine.

Both Botox, and nerve blocks are carried out at the NMC should you wish to try one of the treatments. Not all of our doctors administer them, so please discuss with reception if you are considering booking for a procedure.

Unfortunately we have to charge for these as the equipment and drugs required cost a significant amount more than an average consultation. We price them simply to cover our costs so they are more reasonable than at a private clinic.

[Sybille]

The cost is the problem. I have tried averything except Botox but there is no way I can affor it. Isn't there anything teh NMC can do to get funds from the NHS?

[woodwasp]

hi im the same like you its the cost and no funding on the nhs which is not fair at all

[Pattipan]

Hi, I've been lucky enough to have the GON jab on the NHS through my local hospital in Plymouth. That was 6 weeks ago, but unfortunately, I haven't really had any major benefits from it. Perhaps if I hadn't had migraines for the past 42 years, the outcome might have been better. I'm now waiting for my Neurologist to follow me up (a phone call) to see where we go from here. I believe I can have Botox on the NHS, but not sure whether I qualify under the NICE guidelines of addressing the overuse first.

[Charlotte_NMC Partner National Migraine Centre]

We are working on developing contracts with the NHS for both treatments as well as for general consultations. Sadly it is no easy task at the moment with the changes at commissioning levels. After April 1, we expect things to settle and hope to have more success. We will keep you informed, but it is always worth trying to open up discussions with your GP about referral for either procedure.

[teadrinker]

Thanks for posting this information. I have had both GON and botox at my local NHS pain clinic. The GON didn't help me but the botox has transformed the pain in my face and my migraine headaches. I still get migraines but the headaches are much shorter and less intense for the most part. I no longer need to take daily medication such as gabapentin, and use far less other pain relief.

The injections aren't too bad. If I have them when I am having a pain flare up I feel very tired afterwards, but otherwise I feel OK. It can take a week to settle down (depending on how I am at the time). The clinic does the injections every 16 weeks, and I have just started to get a return of headaches at 11 weeks, but it is well worth it.

I am very fortunate to get this on the NHS - don't know how much longer it will continue for, and a as a result I am doing everything I can to manage my pain and overall lifestyle better just in case...

Botox certainly got me out of an awful cycle of pain / migraine. I was incredibly reluctant to try it beforehand but so glad that I did.

[Charlotte_NMC Partner National Migraine Centre]

I am glad to hear you have had success, frustratingly it is a case of trial and error with these treatments, much more research is needed so that we can understand more about how and why they work for some people and not for others.

[jaynem in reply to Charlotte_NMC]

Yes, I would agree here I think more Research is needed. There has been some done in US, but it would be good to have some done over here. Maybe there is some going on? Might be worth looking into. See if there is any research being done here.

[Hidden]

Under NHS rules, I am too old to have Botox injections. Is this ageism or because they're not effective in people over the age of 65? I've not made any enquiries about GON injections.

How much do the Botox injections cost at the Centre please, and are all 30 or 30 administered at the same appointment?

[VeraS]

I started to receive Botox injections for my Cluster Headache/chronic migraines (which I would get daily for 3-7 days, usually twice a month) back in the summer of 2013. It is 32 injections in the forehead, scalp, shoulders and neck. Not the most comfortable thing in the world, but compared to the headaches, it was like picking daisies. The doses are generally given every 3 months. The first set of shots were *wildly* successful for me, beyond even the doctor's expectations; I could feel the headaches trying to happen at their "usual" time, but it felt like...I don't know, things wouldn't expand or flow to turn it into a full blown attack. Additionally, I did not suffer the photophobia or auras. I would occasionally still get the headache pain, but it was manageable and often resolved with merely excedrin migraine (a first for me!). Seeing as 100 mgs of Sumatriptan, handfuls of Vicodin and every other med under the sun had done very little to manage the headaches (and often made them worse due to the stress of the various side effects, rebound headaches, fogginess, etc...), this was an absolute miracle to me. I dared to think I could finally get my life back and start actually making plans again, rather than be in this perpetual , debilitated maintenance mode of existence. I started thinking clearly for what felt like the first time in ages. Toward the end of the 3 months, the headaches got a little worse and by the time I was due for my second set of shots, I had a full blown clusterheache (though still not experiencing the auras and photophobia like I used to), so I was anxious to get my second treatment and went into the doctor with a rapidly worsening headache to get my shots.

MISTAKE.

Much in the way they don't quite know what causes clusters and migraines, they aren't sure how Botox works on them and it is still a relatively new treatment. When I got the shots, they felt different than the first time (i.e., hurt a lot more, there was some bleeding) and when I left the headache kept getting worse. Then it continued, for days. The best I can figure is that if the paralytic effect of Botox on certain nerves and associated muscles can shut down the migraine response, it's quite possible that getting the shots while I was in a full blown attack sort of left me in an "ON" position, so that there was potentially even few barriers to whatever triggers the conditions. After suffering for days with the headaches and accompanying symptoms, I asked my neurologist if this could have happened. She gave me "I don't *think* so", but basically she couldn't definitely say and another neurologist I consulted with said my theory could indeed be what was happening. I could find no studies that were specific to a person receiving the injections while suffering a full blown attack and seeing as how I had such success with the first round of shots, I basically have resigned myself to dealing with daily headaches of moderate to acute severity until mid December, when the last dose is due to wear off and I'm scheduled for another round. Because of the life altering success of my first round of shots, I'm going to continue with them, but I highly recommend to anybody interested in receiving Botox therapy, DO NOT GET THE SHOTS WHILST IN THE MIDDLE OF A HEADACHE EPISODE. The doctor will probably say it doesn't make a difference, but the truth is, how can they even know that when THEY don't even know how it works? I will update my (what is hopefully) progress after the next round of shots, because if they have the same success as they did the first time round for me, they may be of great benefit to other cluster headache and chronic migraine sufferers (and one that doesn't come with all the wonderful side effects and rebound headaches that every pharmacological treatment I have tried ).

I don't know the treatment protocols in other countries, but here in the US (and our oh-so-wonderful faustian healthcare system), you must suffer from migraines/clusters at least 15 days a month to even qualify for the Botox. In my armchair research on all the studies and clinical trials about it, it also seems that it only effective for particular kinds of migraine, like cluster headaches and chronic migraine conditions, rather than just the occasional migraine that lasts for a day or two (even if those are real skull crushers).

[Queenbee177]

Tried both nerve block made me worse botox just lessens the serverity. On my 5th course

[Queenbee177]

Nhs i get mine on

[ToniPainPositive]

3 years in to a chronic tension headache with migraine symptoms, I have only just come across Botox as a possible solution. Dr Google is my only source of help once again. I have read the research, weighed up the pros and cons and it seems that it may be an option.. only to find that - after three years of working minimal hours, relying on working tax credit and spending what little savings I had just to live - I can't possibly afford it. How can a £600 consultation fee possibly be justified?

[sentinel]

Cost of Botox privately is 600£ every 3 months. The cost of my medication is well above that.

Prescription cost to me is £120 every 3 months. But would cost the NHS more as I take 9 tables a day, plus tramadol and sumatriptan to try and combat the migraines.

Botox on the NHS costs £375 plus 15 mins of a consultants' time roughly £75

Therefore cheaper than my persisting medication cost to the NHS.

Many people who suffer migraines, are currently off long term sick and also claim sickness benefits ... Which in turn costs more than Botox and nerve blockers.

They work, unlike all the other medications we have all tried and miserably failed ... These injections work they should be more widely available and help people have better quality of life without having to suffer miserably first