Fibro and chronic daily headache syndrome

[ToyIla]

I know fibro suffers often have some form of headache condition or suffer from frequent headaches, but I was curious how many out there have had the confirmed diagnoses of chronic daily headache syndrome. Of the three CPDs I suffer from this was the first to be diagnosed by a neurologist about 6ish years ago. When I looked up about it at the time it was, like fibro, without a 'known cause', but possible causes included chemical imbalances and oversensitive/overactive pain receptors (sound familiar).

When fibro was first suggested to me as the possible reason my HMS pain was so unmanageable, I obviously looked into it and instantly spotted the similarities with my chronic dailies, but to date I've not been able to find any information directly linking the two conditions together (most sites might mention migraines or tension headaches, but I've yet to see chronic dailies listed). Now that I've been given the confirmed fibro diagnosis I again find myself wondering if these conditions might be linked. If so could my lifetime of headaches been an early warning for my fibro?

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I have not been dx with this, I have facility headache because the muscles in the neck and shoulder blades are in spasm which causes radiating pain into my head. Bloody hurts

[TheAuthor]

Hi Toylla

I am so sorry to read that you have daily headache syndrome, and I have also been diagnosed with this by my Neurologist just a few months ago (October last year).

I have endured very bad Migraines for most of my adult life and these accompany my insomnia. As a result my neurologist says that the medication used to treat the migraines has caused my daily headaches. He says it is not just my CoCodamol use but my Sumatriptan and Metocloperamide use also. He prescribed me Pregabalin (and says to use less CoCodamol and Metocloperamide) which I have not really had any success with.

I want to genuinely wish you all the best of luck.

All my hopes and dreams for you

Ken

[Fibrofoggiest in reply to TheAuthor]

Hi dear Ken, have you ever been offered prophylactic treatment in terms of something like beta blockers ?

I am as you probably know off to London for more investigation and hopefully treatment, there is talk of injections into the back of the head which although it sounds terrifying I'm willing to go for if it has a good record of success in the reduction and intensity of migraine.Botox is another idea, but I'm not sure whether that is used more for the treatment of cluster headaches rather than migraine.

Sending as always, huge amounts of positive vibes to you and Julie 😃😃

Muchly Foggy 😀😀😘😘

[TheAuthor in reply to Fibrofoggiest]

Hi Foggy

Many years ago we discussed beta blockers but my Neurologist said that I could not have them due to my asthma as I would more than likely be allergic to them. I tried so many different medications until I got to Sumatriptan which really works for me, although they ration my monthly allowance to 9, 50mg tablets.

I have seen a documentary whereby the do the injections in the back of the head and the lady that had them was delighted with the result as she was Migraine and headache free for three months.

I genuinely hope that your trip to London for investigations goes really well for you my friend. Loads of warmth and positive feelings for you also.

Good luck

Ken x x

[Fibrofoggiest in reply to TheAuthor]

Oh Ken, I'm so glad the sumatriptan works for you, I didn't get on with it, it resulted in a very nasty constriction of my throat, so I've moved over to rizatriptan which to some degree works, but only if I get it in at exactly the right time, otherwise it only takes the very edge off it.

Thank you so much for your encouraging words about the injections - the thought of being migraine free for that length of time would be completely amazingly wonderful and make the exhausting journey worthwhile. 😀😀

Muchly Foggy xox

[ang53 in reply to TheAuthor]

Hi I take pitzotifen think that's how you spell it. They have reduced my migraines and headaches such a lot. Took twenty years of trying everything. hope this helps

[Fibrofoggiest]

Hi Toylla and welcome to the forum, I see you have only recently joined what I consider to be the best place on the Internet for support, information and some of us enjoy a bit of fun , in the belief that a laugh can release feel good endorphins, which can only be good 😀

Could I also suggest that you take a peep at our mother site fibroaction.org where you will find lots of very interesting and extremely useful information.

On to you question, I suffer with chronic migraines and have just been referred back to the Princess Margaret Migraine Clinic in London, which isn't great for me as I live in Devon, but to tell you the truth I would do almost anything if it results in any form of reduction of the occurrence and intensity of my migraines. I haven't been diagnosed with "chronic dailies" , as I may get three or with luck four days in a week with them, but not every single day, though sometimes, whilst recovering from one I go into another, which thus is hard to delineate .

I am sending you lots and lots of positive healing vibes and much look forward to seeing more of you around the forum 😀😀

Foggy x

[Betty67]

Yes and found they get worse when I take painkillers (all types) I try very hard not to take tablets for headaches as all it does is postpone them. Massage is helps me

[ToyIla in reply to Betty67]

hi Betty67,

I find painkillers non-effective full stop for everything except period pain (and even then they're not always effective). I'm also sensitive to medication which was discovered after the chronic daily diagnosis and I was basically abandoned to self-management of the condition after reacting to all the medications recommended by the neurologist one by one.

I actually found cutting certain things out of my diet dramatically reduced the number of bad headaches/migraines (or as I like to call them 'sick headaches') I get with this condition. Unfortunately though I'm also light sensitive so the summer can be a bit of a nightmare no matter how careful I am. On a 'good day' I just have a continuous background headache, the kind you know is there (because if you're in pain you know you're in pain) but its more like a dull ache that can be ignored. I never have a day without at least the background headache, which is unusual even amongst those with chronic dailies as you usually get some completely headache free days during a month(even if there a dwindling minority). Then again I don't think I've had a headache free day since my early teens, so I'm not sure what one would feel like lol.

However of my three CPDs this is the one I have the most control over. I know exactly what the 'triggers' are and how to manage the pain correctly when it moves from background headache to 'sick headache'. It's why I thought managing the HMS would be easy and I've no idea where to even start with the fibro. x.x

[Betty67 in reply to ToyIla]

I find with fibro always keep something in reserve. Plan your day and your week.

[ang53]

I was diagnosed with chronic headaches years before y fibro diagnosis. Now told it was the beginning of the condition. I suffered terriblyband had so much pressure at work. Saying no one had that many migraines I had to prove it and was diagnosed cdh with migraine by a neurologist. Justvanothet stick to beat us with

[mo1mo2]

I too have chronic daily headaches told they are migraine tried every drug now they want me on an elliptic drug not too happy as very serious side effects

Maureen

[ToyIla in reply to mo1mo2]

I'd be wary about the anti-epileptic, it was one of the ones they tried me on and of all the reactions I had it was the most dangerous of all the medication reactions I had. So, yeah, I don't blame you for being concerned *big hug*