The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

Thoughts on the chronic & refractory migraine

#1

Having watched several videos on this years migraine summit, including the videos about refractory and chronic migraine, it strikes me how experts keep talking about the progression of migraine from episodic to chronic to refractory, but none mention patients who one day have a migraine they never had before and it never goes away. I never had episodic migraines in my life. The existence of many mav patients is the same - one day you get dizzy even though you never had a migraine before and the symptoms last every day or months or years. Yet the experts don’t really seem to discuss this, they treat ut as a progression from acute attacks to chronic. Why are mav patients so different then?

Another thing that has me curious, is why some people with acute migraine attacks develop an attack that lasts a week and they are hospitalised to break the cycle. Yet millions of mav patients with 24/7 symptoms for years on end are given preventatives. I’ve never been given any acute migraine drug to try. Why is this? Why are we different than those who they hospitalise?

The video with David Dodick about chronic migraine was really informative. He said people with chronic migraine have structurally different brains than those with episodic migraines. They aren’t encountering more triggers because they are putting themselves through more triggers, they don’t have a worse diet or lifestyle, they have more sensitive brains and arw triggered by more things. He talked about central sensitisation too and i think that must be a big factor for MAV patients since so many of us present with constant symptoms.

Thoughts, anyone?

#2

I used to say the same thing. I certainly never had the classic migraines. But I remember having lots of brain fog and nasal pressure, which was not painful. I also had lots of seemingly random neck “attacks” with pain, bouts of anxiety for unknown reason, yawning excessively at weird times of the day, etc… So, yes, I’ve never had episodic migraines in the classical sense. But if I go back in memory, I can find plenty of interesting examples where I might have been having some form of migraines. Even after an international flight, I remember feeling “wobbly” and kind of strange for a couple hours. And then, yes, there was a big event that kicked off MAV and it quickly went chronic.

Actually, most of my 30s I was trying to feel better, constantly searching for a health problem that fits all the neck, irritibility, mood swings, brain fog, hearing loss, etc symptoms. I hope I found it.

I think we are definitely a minority of migraineurs. It’s frustrated me at times too, because its not something that you can easily explain to someone. From the outside it looks like we just have an anxiety problem. Most of the time my migraines don’t hurt at all, they are extremely debilitating on cognition and of course I’m dizzy most of the time. So then how can explain this to someone that is watching me go through it all. I’m still able to do “stuff”, its just hard and uncomfortable. I get cranky or feel anxious, so people assume I just need to chill out and work on “meditation” or get a counselor. Of course, they are right, but that’s not the root problem. :grin:

1 Like
#3

I actually have way more questions than thoughts for these experts…

  1. Why does migraine present as MAV vs head pain or pressure?
  2. Why is it that some preventatives that work for traditional migraine not do so well with MAV (have read this from several experts)?
  3. Why don’t triptans work for MAV if MAV is migraine?
  4. How did they find that chronic migraneures had a more “sensitive brain”- imaging techniques with stimulation?
  5. At what point does fibromyalgia, dysautonomia, anxiety/depression, and migraine all become the same disorder, presenting differently?
  6. Is there a root cause beyond genetics that we’re missing?
1 Like
#4

I suspect that some of the people who get hospitalized are put there because the doctor who initially examines them (in the emergency room, let’s say) doesn’t know what is wrong with them, so the doctor says “let’s admit you” hoping that someone else will be able to figure out what is wrong with the patient.

#5

@napagirl i thought the comments about how chronic migraine brains are different was interesting. Because we all get told our mri scans are normal, since they’re only looking for tumours or bleeding on the brain. They aren’t looking at areas of brain activity because you need a specific mri test for that. Why don’t they do that test on us all then?

The stuff about personalised medicine was spot on - that can’t be introduced sopm enough imo. We wouldn’t need to be guinea pigs. Highly individual conditions like migraine need that personalised medicine asap.

The explanation of how medication overuse headaches work was really interesting too. Painkillers actually stimulate the central nervous system more thus resulting in headaches. I think that explains why i couldn’t tolerate any preventatives i tried without getting more intense migraines. They’re making my already sensitive system even more sensitive.

#6

Did they mention genetic testing for med response for migraine? This does exist for depression. I know 2 people who have been unsuccessfully treated for depression. They received a genetic test that tells which specific antidepressant med would have the highest likelihood of working for them. Both had great success with this route. We need this for migraine, and I am 100% positive these researchers are aware of the test for antidepressant meds. Maybe they’ll design one for migraine.

#7

I understand in US you already have access to genetic testing then? Amazing. I’m not sure if some msy be available privately in UK. I know a programme has bern developed in UK for some types if cancer but as far as the UK NHS is concerned it’s still very much in its infancy still. Still very much in the laboratory and unlikely to be in regular use by the NHS for a long time if indeed ever. Helen

#8

Except all preventatives are not ‘painkillers’. Ami at very low dose is used for chronic pain but is a vestibular suppressant. Betablockers and calcium channel blockers aren’t painkillers.

Going by my own personal experience with, say, light, I think an acutely hypersensitive brain will end up reacting to the most innocuous of things. Dolly Mixtures probably. It wouldn’t necessarily need anything as powerful as either painkillers or preventatives. Helen

#9

Helen, yes. And it seems many insurances are covering it. The 2 people I know had theirs completely covered by insurance.

I am only referring to the test to see which antidepressants med will work for an individual.

Other genetic tests for various conditions are also available, of course.

#10

It’s available in the uk privately but costs about £900

1 Like