It's still "only" a migraine , how we can be sure ?

[dagmarafairley]

Hi. For many many years my situation was very clear , suffering a “classic” migraine every 7-14 days – same symptoms every time I had no doubts – it was a migraine. But in the last 2 years things has changed and I was diagnosed ( over the phone) with a chronic migraine. Between the painful migraine I'm experiencing silent migraine, awful brain fog, difficulty with speech , problems with thinking and learning , fatigue , occasional weakness in arms and legs. And yes , all above are ( apparently) common migraine symptoms but I have an impression that everything is , soon I will be told that a hair loss or itchy spots are also a migraine symptoms ( /s). Where do you draw the line , when it is still “only” a migraine and when it isn't ? Is it a case that once you have migraine written in you med records they will blame it for everything ? I would love to know your opinion. Thanks

[Gambit62]

if you are suffering from hair loss then I would mention that and ask for blood tests - it could be a sign of thyroid problems or iron deficiency or other vitamin deficiencies (eg B12). All of these could also explain the other symptoms you are suffering.Unfortunately the test for B12 deficiency is more difficult to interpret than other tests and most medics aren't aware of this.

[Cat00]

I think to a certain extent you are right. I've had chronic migraines for 25 years and I've never had a brain scan whereas I know people who have one "out of character" migraine and had a scan straight away, once you've "migraine" on your file they assume you can get brain tumours.

I think the trouble is all of the symptoms you describe are not uncommon for chronic migraineurs. Migraines are pretty big physical events and if you're having every few days then you're having a lot of Prodrome and Postdrome inbetween so you havent got many normal days left.

I have other diagnosis too now, like fibromyalgia but I think most likely that was caused by having chronic migraines in the first place.

[Chleo11]

Hello. I'm glad that you're talking about this because I feel the same about getting a diagnosis of chronic migraine (I've got the same symptoms as yourself). As soon as you have the diagnosis (which is not based on any tests but only on what you're saying and what the doctor think), other doctors don't want to touch you anymore. It leaves me puzzled because migraine is a very common ailment, right, however, chronic migraine is not, supposedly. So, how can they give us the diagnosis without considering any other chronic illness? The issue with things like hair loss or itchy skin, could be a lack of something, or a physical reaction to the stress you're experiencing with your chronic pain. I guess you're a woman (???) and the hormonal side of things can add to the issue. Modern medicine is very much biased against women and what you're saying to your doctor will be dismissed when the same coming from a man will lead the doctor to order a whole set of tests and a referral to a consultant. The headache specialist I saw with the NHS several times was adamant that my chronic migraines had nothing to do with hormones (during my whole life when my migraines were episodic, they were closely linked with my cycle) but felt it necessary to mention on the report (he dictated it in front of me) the fact that I was perimenopausal with a smirk on his face. So what is it then? Ah yes, the hysterical middle aged woman.

When it comes to medication, unfortunately, I have never found one that really works for me. Awful side effects too. I'm still looking though. What else can you do?

If you can, see private doctors. Try acupuncture, have healthy good food. Be kind to yourself. I wish you all the best!

[K7227]

I agree, it’s really difficult. I have had chronic migraine for 11 months with many of the symptoms you mention but I saw a hormone migraine specialist who said she thought the topiramate i was on was interacting with my mini pill and hormones (I’m peri menopausal) and causing a lot of the symptoms which I had been putting down to migraine. I have been much better since stopping the topiramate. I still have chronic migraine but feel so much better in between and less brain fog and memory/concentration problems. It’s so hard to know if it’s menopause or medication or the migraines (or something else!)