Recipe for Hemicrania Continua
Around six years ago, my wife started getting excruciating headaches for no apparent reason.
Unfortunately Bromo Seltzer didn't manage to quite get my wife into a ta ra ra boom de ay frame of mind
They seemed to be non-stop, and whatever she took for them, they never disappeared completely.
Six years later they still haven’t disappeared, and my wife, now out of work, disabled, and almost always in pain because of a condition diagnosed as Hemicrania Continua, is due to be admitted for surgery on Wednesday of this week, in a bid to alleviate her difficulties.
I’m hoping to blog about this over the next few days and weeks to let people know how she gets on, how our family gets on, and to bring her disabling condition – Hemicrania Continua – to the attention of a wider audience – that they may understand it more thoroughly, and hopefully help society become better disposed towards helping people who have it.
So what is Hemicrania Continua ?
Well the dry medical definition is that Hemicrania – or HC – is a rare form of “primary headache” – that is a headache for which no cause can be found – it is that it is. (and if that sounds as if it doesn’t make much sense then do please tell my wife about it !). It’s related to other forms of primary headache conditions such as Cluster Headache – CH . Cluster Headache is usually several extremely severe headaches coming rapidly one after another in a very short time. Although attacks can be very frequent, or perhaps not so frequent, there are periods of respite in between. Hemicrania is a usually a left sided constant bi-lateral headache – it’s down one side of the head only and may vary in intensity, but is usually ever present. It’s a disabling condition, many sufferers have to give up their jobs, and medication used to treat it can cause a large number of side-effects – some of them very unpleasant.
I could – and will – tell you more about HC later – but for the time being I’ll leave you with this recipe for Hemicrania Continua from Liz – a Hemicrania Continua sufferer who posts on the Ouch website – Ouch is the Organisation for the Understanding of Cluster Headache – and acts as an umbrella group for all rare headache conditions. Please do visit their site.
Here’s the recipe :
Recipe for Hemicrania Continua
Take some labour pain – increase the strength a little
Add: a burning sensation
a strong feeling of weakness
nausea
some vomiting
sensitivity to light and sound
blocked nose on affected side
blurred vision
slurred speech
drooped and watery eye on affected sideStir well
Now pull the pain through the corner of your left eye until it goes right through your head so you can feel the pain of it coming out the other side.
Send stabs of strong sharp pain through the top of your head from time to time.
Boil well for at least 72 hours
Simmer for 12-24 hours
Boil again for 12-24 hours
Simmer again for a few hours
Boil again for 12 hours
Repeat this for the rest of your life occasionally swapping sides.
Oh by the way, I forgot to say, while you are doing this you must cook, clean and shop for yourself and go out to work.
Does that sound like fun ? No ? That’s right, it’s not !
Please check back here to see how my wife and our family get on.
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Recipe is a work of genius in observation of this horrid condition which I have suffered from for a number of years. Good luck with the op, and thanks for making me smile with the good humoured approach. I too have a very supportive wife and this makes a big difference. Looking forward to the next blog.
Looking forward to reading about your wife’s progress. I am a 34 year old father with 3 children and a beautiful and faithful wife. I have Hemicrania Continua and I can attest that it is awful. Balancing this condition with a career while providing for the home presents a challenge every day. I empathize with your wife and the situation
I have just been diagnosed with HC and my family is also very supportive. I am just starting on the long process and wish your wife and your family all the very best and I also look forward to reading more on your wifes progress. Any idea how many of us there are out there?
Hi Alan – best of luck with Hemicrania – I know how difficult it is. The very best place to find out more is with Ouch – the Organisation for the Understanding of Cluster Headache (which is where I picked up the “recipe” above.
Although primarily concerned with cluster headache it covers all similar headache related conditions (although not especially migraine) – and has been a great help for my wife – When she was turned down funding for her op for instance we mounted an appeal put together by a an Ouch member who suffered from Cluster Headache
Join the Forums – there are lots of regular posters, and these include the consultants who are working in the field
You can find the site here : http://www.ouchuk.org/html/
Thanks for the advice. I need all the help I can get to better understand and maybe know I’m not facing the battle by myself.
What surgery is your wife having? I am curious because I have had this condition also for the past 2 1/2 years. I have a surgeon who is trying to get my insurance to approve an occipital nerve stimulator. I can definitely sympathize with your wife. I am still working although this is getting progressively worse. It is really hard to work full time and take care of my family (husband and 2 kids). I wish your wife luck that whatever procedure she is having helps. I have found no medications other than the indomethacin to be helpful and it caused lots of GI problems.
The surgery is an Occipital Nerve Stimulator implant . It’s a device which puts electrical pulse directly on to the Occipital Nerve via electrodes at the back of the head, with a controller and battery pack inserted high in the chest.
My wife like you only had success with indometacin – and it’s made her anaemic and reduced her bone marrow production. I guess you tried all the others as well – topiramate, and so on. All of these were successful to a degree – but stopped working after a short length of time – or developed serious side effects.
She seems to be doing OK with the new device so far – early days though.
I can recommend the OUCH website – link above – Most UK sufferers eventually get referred to the National Hospital for Neurology & Neuroscience at Queen Square London – part of UCLH. Her consultant is Manjit Matharu, and has also been seen by Peter Goadsby.
If you’re in the UK it often takes an appeal to the local PCT to get funding for the op – this was the case with my wife. Not sure how you would go on with an insurance company (are you in the US ?) – but you could point out that they’ll likely be paying out for meds and stomach ops for many years to come if they don’t try this – the consultants at Queen Square tend to do work in the US too, and both take NHS and private patients –
Hope this helps.
PS – have you had the ONS injections ? basically lignocaine & steroids injected into the occipital nerve – these have been partially successful for my wife – and some patients report dramatic success with them (for several weeks at a time)
I am in the US. Yes, I tried every other class of medicine available for any type of headache and no others worked. I had serious side effects with some of those also. I have had the occipital nerve blocks. The first one was the best but only lasted 3 days. I am so glad your wife is finding relief with the stimulator. I hope she continues to. Hopefully I will be able to receive one myself. It is different as far as dealing with insurance companies but I am willing to fight to get the surgery. I have talked to Dr. Goadsby through email myself. He seems really nice. He offered to see me but I live far away from California and could not really afford to travel there. I will check out the OUCH website. Thanks so much for the recommendations!
Best of luck and thanks for dropping by
I used to suffer from Hemicrania Continua and have written about my experience. I would encourage anyone to visit.
http://www.hemicraniacontinua.com
My hope is this may somehow help someone.
Mark
Sorry it’s taken a while to publish – I’ve not been too active on the blog lately.
Hi! I’m not shocked to hear about you…I have henicrania continua and suffer tremendously and have been suffering for approximately 5 years now. In May of 2011 I had a neuro stimulator implant on my right side and it is working 60% of the time. It saved my life literally!! My problem is that I’m allergic to indometheson in all forms as well as most of the drugs on the market today. In addition to that The doctors now feel that I need a second neuro stimulator for the other side of my head because my headaches are more powerful now on that side and the pain is getting stronger. My problem is they knew that was a posibility from the start.
Unfortunately, I have to still work and can’t have the surgery for another year…
It’s important to have a supportive family… sometimes they are and sometimes they are not so it’s very hard!
I haven’t been to a wedding or family function in years. i spoke to an e.n.t. today about special ear plugs to stop me from hearing any noise so that I would be able to go somewhere….we’ll see how that works out!
Good luck with you’re Neuro surgery! It really changes your life.
Good to hear from you – it’s my wife who’s the sufferer.
Where abouts are you by the way ?
In the UK all implants of this kind are now normally dual fitted (ie. one on each side) – as research seems to be showing that the headache tends to shift to the other side over time without one. My wife had the implant last summer. It’s worked well, but it’s still definitely a treatment not a cure. She’s now noticing a lot more of the aches, pains and general fatigue that she had anyway, but wasn’t so apparent because of the extreme pain.
In general she’s cut her pain by around 50% – which is fantastic – but … if she was regular experiencing 7, 8, and 9 out of ten pain before, it means she’s still experiencing 3, 4 and 5 out of 10 now. She rarely has a “zero day”. Sometimes she just wishes she could have a day off from having hemicrania.
We get similar problems with weddings of family functions – my wife tends to have to lie up the next day to recover, and they’re a bit of an ordeal. Relatives all think she’s being funny of course, so we don’t get invited so often any more. Oh well c’est la vie !
Best of luck with your treatment
Thank you for the information on the UK, here in the U.S. they do only one side and hope that it will work and not shift. My neurologist is not sure if it is shifting sides or if I’ve developed an additional irritractable hemicrania continua condition on the other side. All I know is that if I wasn’t so highly allergic to most of the medication on the market I wouldn’t be in this situation. Anyway, A week and a half a go I had 3 nerve blocks (2 in one day)and ended up in the E.R. again so they scheduled the second neurostimulator for July 10th, 2012.
The interesting/ different thing about this one is that it is on the left side they are placing it by the heart so it’s a little scary, but if it will help I will do anything!
Last night my nephew got married and I wanted to be able to participate a little since I haven’t been to a wedding in so long. I spoke to my E.N.T. and asked if they make special ear plugs to block out all sound. He told me no but they do make something called Musician’s ear plugs. They are very expensive and they are custom. They allow you to hear the person’s voice you are talking to but eliminates 25decibles of exterior sound. As a speech therapist, I jumped at it…$300- later it was worth it, but I wish it blocked out more! The down side is that when I talk I hear myself very loud…others are lower but I am loud and that takes getting used to.
I still had to leave the second they tied the knot, but I made it through the ceremony (Chupah) which had music.
I then had to leave and go straight to bed and was quite sick!
I understand about not getting invited to things and about the relatives thinking your wife is funny…I get that with some family and friends too. People just do not understand!
You’re a good husband to go on the blog and be understanding!
Family is sooo important!
Just an update…as much as I need the second stimulator, the insurance just denied me the procedure a half hour after I got the medical clearance… oh well.
this really made me laugh… just what I needed to read today. 22 years of HC and counting.
Thanks for commenting – I’ll try and check out your blog – it looks good.
I just had a second Neuro stimulator implanted and I think it helps. I had it done finally on July 11, 2012 and my headaches are not as severe. The stimulators help approximately 50-60% of the time which is a major improvement! It might be something worth considering. The only thing I can say is that I do feel more fragile these days. But there are no miracles!
Hi, I have had HC since 1984. Was diagnosed in 2007. I’m curious to know if anyone else suffers from brain fog and memory loss. The last 28 yes just seems like a big blur for me.
Yes my wife gets that all the time. Hard to know how much of it is down to medication. She’s much worse when she takes Gabapentin (although it does tend to help with the pain). Does anyone else also have Adie’s pupil ? (aka Holmes-Adies syndrome – usually sufferers have one eye pupil a distinctly different size to the other one) Although it’s supposed to be benign, we’re wondering if it’s linked.