Chronic migraines

[Qwan]

Hi I'm new here,

I'm wondering if anyone else has literal chronic migraines or atypical ones.

I always feel a bit strange using the term chronic, as Drs respond with the question 'How often do you have migraines'. To me chronic is pretty self explanatory but I understand that the medical definition is something like 15 days per week of headaches, 8 days of which are migrainous?

For me, it's been concluded (by specialists) I have none-stop silent migraines (lots of aura & sensitivity), with chronic headache (I've never had a day without a headache, I don't know how that feels) and more typical migraine pain (as in disabling pain) happens at least some point every day. They've suggested I have several types of migraine at once, perhaps this is normal? (Cluster, chronic and vertiginous are the ones floating about right now.)

I'm not always completely disabled by the pain, but I've gotten used to a lot of the pain.

The way I explain it to people is that I have a base level headache/migraine that is tolerable, but I seem to be triggered by every possible trigger, so they add on additional migraines at different points in the day. And sometimes they totally pass the threshold.

I'm used to walking around being able to just about see colours only, and only pointing out I'm having trouble seeing when everything is turning white. I don't normally point out I'm in pain until I'm shaking uncontrollably from it. So I often talk as though I'm 'starting to get a migraine' when in reality, I always have one.

I always feel a little unsure of what to call my experience as it's not typical (bilateral often, mix of symptoms that over lap different migraine types, completely chronic symptoms).

I feel there should be serious pain to qualify as a migraine, but also feel that I don't have silent migraines because I always have moderate pain. >__<

Anyway, I haven't met anyone who has this experience so was hoping there'd be someone here with it? Even if it's just at some point in their life?

[Sewnsew]

Hi Owan, you certainly seem to have more than your fair share of pain! You're right with the definition of chronic migraine. I was able to have Botox via the NHS for my chronic migraine but when the Botox reduced the headache days to less than 15 the Botox was stopped as it was then classed as episodic. I can't have NHS Botox again unless the headaches become chronic again!

Like you I have had more than one type of headache, I have had a lot of facial pain which the London Migraine Centre (they have changed their name now) thought might be an atypical migraine. My neurologist at the time just shrugged his shoulders and said I got multiple headaches! Not helpful but we eventually got the right drugs and my pain was reduced. Working at a monitor was not helping with any of the pain and I am better now I have stopped working, less stress too, but no money!

I had worked and carried on with pain for so long I think my body and mind had just had enough! I couldn't do it any more. I'm 57 so not at retirement age yet. I miss my colleagues but don't miss the hassle, the sickness reviews, the Occupational Health appointments etc etc.

I don't know what job you do but treat yourself kindly. I know my colleagues were very understanding but I didn't want any special treatment. Management never gave me any special treatment as far as the sickness policy went. Though they had made "reasonable edjustments", ha ha!

Are you on any meds, I've managed to stop some of mine since I finished work, I'm taking Propranolol, Nortriptyline, paracetamol or codydramol.

Nice to hear your migraine story, hope it improves for you!

[Marialiana in reply to Sewnsew]

Did you take Ill Health retirement?? was that an option??

[JTaura]

Hi Qwan

I'm sorry to hear that your headaches and migraines are so persistent and strong. I've suffered from migraines since I'm 14 years old. I'm no 41... My ones are not all the time like yours. They come and go in periods. Sometimes every day, but sometimes once a week or even once a month.

The key in my migraines is that I get the pain AFTER the aura. Because of that, I'm able to take big doses of Ibuprofen when I get the aura and then I don't have the pain. Still I have nauseas and other migraine symptoms. But at least not disabling pain as I used to have.

The point I'm making is twofold:

- first, before understanding that, I used to take lots of strong meds. Even when I was a boy. Those meds distorted my own sense of pain and migraines symptoms. And I certainly used to have many more migraines than I have since I stop the painkillers. I don't know if that means anything to other people, but to my body, it made a difference.

- second, if you try to differentiate other migraine symptoms (aura, nausea, etc) from the pain then you can treat them differently. For instance, for a long period I treated the nausea with acupuncture: every time that I had the aura I proceeded to put the needles as my doctor advised me. That controlled the nauseas while the Ibuprofen the pain.

Finally, maybe you have came across this book, but although very old (1970), it is a classic and very good one to understand migraines from both a scientific and personal experiences point of view. It is from Oliver Sacks and it is simply called Migraine.

Good luck