I find myself here again.
After nearly 4 months of taking amitriptyline and being ‘on the up’ – albeit slowly – The Headache takes over again. In bed in the middle of the day again. Wondering why again. Feeling hopeless again.
I went through my all-too-familiar cycle again of (1) getting angry, (2) crying in hopelessness and (3) getting online and looking for the next possible solution to this hateful, unbearable problem.
Once again, I find myself at the mercy of Dr Google.
I came across Botox. Botox has been NICE-recommended for chronic migraine and available on the NHS since June 2012.
Who can have botulinum toxin type A?
You should be able to have botulinum toxin type A if you have chronic migraine (that is, you have headaches on at least 15 days each month, with migraine on at least 8 of these days) and:
you have already tried at least three different drug treatments to prevent your chronic migraine headaches, but these have not worked and
you are not taking too many painkillers or using them too often.
Further searches suggest positive results for tension headache, too. It makes sense to me that un-tensing the tense muscles I have could help..
First reaction: Oh. My. God. These are exactly my pain points. Second reaction: Can I sell a kidney on eBay to fund it?
I contacted a consultant at UHCW who is a specialist in this area. He replied to say that even if I did get a referral from my current consultant, Botox would not be his first course of action, more like his last – there are many more medications to try first. He also stated that Botox is successful in “20-40%” of his patients.
This obviously made me wonder if Botox is a bad idea. I went back on to the forums I regularly haunt and found that there were people with good experiences and bad. One person had developed an extreme headache after her first treament which lasted two days and then faded back to her original headache. Another said it had been transformative and she had her life back.
But many, many more had been living with chronic daily headache for years. One lady had suffered for 45 years. 45 YEARS! She listed the medications she’d tried.. the alternative therapies.. but no Botox.
When I’m in stage (2) – crying out of pure frustration – I often think of the total lack of urgency in the treatment of headache. It’s not life-threatening, you’ve had your standard MRIs to prove that, so you’re okay.. But until you’ve lived with headache and understand the devastation it causes in every area of your life, why would you have any urgency?
I just wonder.. if a consultant were to develop a sudden-onset headache like I did, would they be happy to follow the route of their patients..? Wait 3 months in between consultations.. try a new drug for a few months.. see what happens..? Or would they think that not being able to work, not being able to read, not being able to live their life as they had done before was unacceptable and go straight for the treatment that gives them the fastest relief?
I’m not saying that Botox is a magical solution, how would I know? But if there is something out there that could potentially get me my life back, trying it should be an option?
The only two reasons I can think of are (i) it’s too expensive for the NHS to try without having tried cheaper alternatives first, and (ii) consultant reticence – “let’s try something else first, let’s wait and see…”. (Clinical trials suggest very rare occurence of side effects.)
What if that lady with a 45-year history had insisted on being treated quicker, made herself a nuisance demanding help, been more proactive.. what if I had been more demanding – would I still be here? Is there a 20-40% success rate because the other 60-80% that it could help are at home, suffering quietly, picking up their prescriptions, living as small a life as is possible so as not to aggravate symptoms??
A friend suggested trying the ‘beauty’ style Botoxers to see if a small amount did result in a bad reaction.. I feel alone again.. I’m taking matters in to my own hands again when I should have professional advice, I should have professional support..
I looked in to private medical consultations. An initial consultation costs around £600. How that can be justified, I have no idea. It’s out of reach.
So I contacted some ‘beauty’ style Botoxers.. not ideal, but it might give me an idea of whether it could work for me..?
I don’t know where to turn again. Should I do it? How can I possibly afford to do it? What if it failed?