Optimism

I’m aware that I’m usually only drawn to my blog and writing about The Headache when it’s all going badly – it’s an outlet, and one that I’ve been grateful to have – so I thought I should write a positive post while I can!

I’m back to where I was a couple of months ago, feeling some positive effect from the amitriptyline.  I have moments (sometimes a couple of hours at a time) with no headache.  It feels bizarre!  The first time it happened, I thought there was something wrong with me.. why do I feel so floaty?.. until I realised I was fine, I just didn’t have a headache for the first time in three years!!

This progress was short-lived last time and was followed by a bad period of a few weeks where things fell apart again.  It was almost worse than before, because I’d had a glimpse of the life I hope to have in the future.  Maybe this time, though.. I have to be optimistic.

Choose-Optimism-_n

Optimism is an easy choice when you’re not in pain.  I think I’ll make the choice while I can, though.

I’m grateful for the messages I’ve had from fellow bloggers while I’ve been AWOL, you’re all lovely, thank you.

The possibility of botox for tension headache

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..

Botox for tension headache

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?

A turning point: Massage

Not too far in to my headache story (after seven months of a constant headache, neckache and nausea, in fact), I was pretty run down and stressed.  I decided to try going to a massage therapist.

I researched a few in my local area.  I knew I needed someone who knew about myofascial pain and trigger point massage, instead of the ‘beauty’ type of ‘scented-candle-whale-music’ massage.

I emailed a few places and got several responses (generally of the “yeah, we can help with that” kind) but received a detailed, confidence-inspiring response from one of them (Paula at Bodyworks in Daventry, for local readers).

I had 5 sessions. During this time, Paula was able to eliminate, piece by piece, specific areas of back and shoulder pain.

The ‘trigger point’ method involves identifying the most painful spots and pressing on them until the pain is no longer felt.  It’s not an easy thing to sit (or lie) through, but it was of tremendous help to me at the time, and Paula really put me at ease.

I’m interested to know if anyone has had success with treating pain or headache with massage?Pain-Positive-Tag1

Mission: Reduce tension

Yet another neurologist.

The appointment had been swapped and changed around a couple of times, because it had been begged as a favour.  Together with the fact that the previous 5 weeks had been mostly bed-bound, and that I couldn’t help but do the usual thing of putting all my hopes on this one appointment, I was pretty anxious going in to the clinic.

I needn’t have bothered getting worked up. He asked me questions – questions that I have never been asked before about my headache history, my lifestyle, how it feels when I’m in pain… Imagine that – a doctor who listened to my answers.  And not only listened, but seemed to read between the lines, too.

He told me of a patient that he had seen previously with very similar symptoms. He had diagnosed her with a tension headache with migraine symptoms. He had treated her with an anti-depressant that is used, in this case, as a muscle relaxant.

I’m a little embarrassed to say that I started to cry!

Why are you crying?” he inquired.

“Because I have been prescribed an anti-depressant before, and I had a terrible time.” I explained that the ENT consultant I had seen had given me 6 weeks worth of pills, but did not tell me that they were an anti-depressant, and gave me no warning of the dangers of stopping them abruptly. [Read about my experience.]

He reassured me that we would increase and decrease the dose gradually, as should always be done, so that that would not happen again.

But then he said, “You got upset before I mentioned the amitriptyline, why was that?”

Unbelievable! Not only listening, but observing and reading between the lines – this is unheard of!

Because I’ve heard those terms before – headache, migraine – and it doesn’t help me – I don’t know what to do about them.”

It’s true – those terms have been mentioned before, both in terms of them being suggested and of them being dismissed as causes. I have left many consultations thinking, but if that is the cause, what next? Who is going to help me to manage it or cure it?

I spent the next couple of minutes apologetically breathing back the tears to regain some composure, during which he talked about how very seriously he takes headache, that he knows it can be life-changing, and of the cases he has seen before. Hallelujah! That is the first time I’ve heard any of those things!

We discussed the role that anxiety plays in illness, and I guess I had to concede that my response to whatever started the headache has been tension and anxiety (understandable, I think, given what it’s done to my life!).

I have started a course of amitriptyline, moving up a dose each week. The strange thing is that, now the tension over my right eye has been identified by someone else as causing the pain and nausea that I live with daily, I’ve become super-aware of how tense that muscle is, and I’m able to see a way forward in the task of un-tensing it.

cloud-breakthrough

He explained that the white “structural damage” seen on my MRI is not uncommon in migraine sufferers and, for now at least, we won’t investigate this further.

Two further appointments – to an optometrist and a reading clinic – will, I hope, explore if there is actually anything wrong with my eye / reading ability. Maybe I will have to accept that it is entirely tension – although the fact that this started very suddenly at a time when I was at my happiest leaves me with a seed of doubt (one which I will happily admit that I’m wrong about if the amitriptyline helps me and returns me to a normal way of living!).Pain-Positive-Tag1

Hope: A consultant who cares

After my last consultation, at the end of which, I was told that there was ‘nothing wrong with me’, I felt I had nowhere left to go.

After spending a couple of days feeling helpless and – I will admit, doing a fair bit of crying! – I decided to take matters in to my own hands and find my own doctor – one willing to acknowledge, at the very least, that there is something wrong with me, and at least try to work out what that something is.

I spent a headache- and nausea-filled Sunday afternoon writing out all my notes – every appointment, every possible diagnosis that has been mentioned and ruled out, every symptom… I researched the local neurologists, opthalmologists and ENT specialists and I posted my notes out to the first 10 on my list with a letter asking if they could offer any help.

The responses were mixed, ranging from the very lovely;

“Thank you for your letter. I am sorry that you are having such problems and that the cause/diagnosis is proving so elusive. I doubt if I can further your cause as the bulk of my clinical work relates to glaucoma which obviously is not the issue here. So as you can see I am of no help to you for which I can only apologise.  Hoping that you make progress.”

to the (mostly) not-quite-so-helpful, including;

“I’m afraid I find it inappropriate to be asked for medical advice via mail. I would suggest that if your headaches are still an issue, the sensible thing to do is to visit your GP.”

(Gosh, I wish I’d thought of that!!)

As it happens, I have a close relative who has worked for many years in a hospital, and she suggested I approach one of the consultants that she has worked with and ask whether he might know someone who could help me.

His response was overwhelmingly nice.  I haven’t been accustomed to such kindness!  He reviewed my notes and spoke to a neurology consultant that he knows. I think I might have said “thank you” too many times!

dry-cracked-earth

Hope.

Pain-Positive-Tag1

There’s nothing wrong with you..

I had a follow-up consultation at QEH, Birmingham.

It was the familiar ‘ushered in, ushered out’ kind of appointment. I felt decisions had been made before I entered the room. I was told that my last MRI scan showed “Good news! There’s nothing wrong with you!”

Hurrah! So I can skip out of here pain-free and return to my carefree, headache-free, study-filled, fun-filled life? Brilliant!

“But…,“ I said, “that IS good news. I’m glad that the MRI showed nothing serious, but.. I still have a headache. I still have almost constant nausea. So what are we going to do next?”

The consultant – having barely turned his face towards me to take his eyes away from his screen, spinned on his chair back to face the wall and said “This is good news, there’s nothing wrong, and therefore we don’t need to take any action.”

The room fell silent as he waited for me to leave.

I didn’t.

Disbelief. My throat tightened and my eyes began to well up.

“But there IS something wrong with me – I have a headache…,” I said quietly.

Sighing, he turned towards me, and repeated “We can’t find anything wrong. I’m afraid there’s no more we can do for you”, and gestured towards my coat and bag on the floor beside me, turning his chair back to the wall.

A student entered the room, coming in to what must surely have looked like a strange scene of a patient sitting dumb-founded and a doctor sitting with his back to her.

“So will I see you again?”

“That won’t be necessary”, he said to his screen.

I stood up, taking my coat and bag, and left. I did not thank him for his time. I was fuming. I walked back to my car and cried.

Brick-Wall

Yup. Again.

Pain-Positive-Tag1

The story of my headache

I have finally got around to putting all my notes together and creating a timeline of my headache so far.  For those of you who are interested – and maybe want to compare notes – please see the ‘My Story’ page.  (Up there on the top right corner, see?)Pain-Positive-Tag1