Who can help diagnose specific migraine?

[Mummaru]

Hello all,

I am posting on behalf of my 68 year old Mum who has suffered with Migraine with visual aura since 1963. She currently is prescribed nortriptyline as a preventative with sumatriptan and co-codamol for relief during atracks. She has tried other medications over the years.

In recent years, her migraines have become more severe and two weekends ago, she began to experience a 'normal migraine' on the Saturday morning, which continued into the Sunday. By Monday the pain intensity increased dramatically and she was vomiting and confused, muddling her words and not remembering names (including her own). Thinking she was having a stroke by this point, we called 999 and an ambulance was dispatched, however 3 hours later the ambulance driver called to say he would be several hours more and could we get her to the hospital?

So we took her to A & E, she was given a CT scan and took bloods and a urine sample, all of which they said were clear. So they sent her home with an appointment to attend the ambulatory emergency clinic the next lunchtime. Her pain had subsided by this point but she was still confused etc. Although not as bad as earlier in the day.

As my Dad had suffered a heart attack two weeks previously, I had to drive them to the hospital the next day. When i arrived st their home, mum was experiencing another excruciating migraine, even worse than the previous day, so I got them up to the hospital where mum was violently sick, fitted with a cannula and given anti-sickness meds to which she had an allergic reaction. Once this was under control, she was given oramorphine which helped with the pain, and admitted for further tests & observation.

The next day she had an MRI which we were told was clear, so they decided she needed a lumbar puncture and EEG. On the Thursday evening (2 days after being admitted to hospital), mum began to get pain in her head, but alongside this she began to get even more confused, this time in an aggressive manner. She was swearing and being rude about the other patients and staff (something she would NEVER normally do), and was refusing medication. Eventually my son persuaded her to take the oramorphine which helped her sleep and ease the pain.

The next day, all hell broke lose. Mum attacked me twice, had been hallucinating, was paranoid, and aggressive to everyone and thing and thought she was a prisoner! Somehow, during the course of the day I managed to persuade her to allow them to carry out the Lumbar puncture (of which mum had very low pressure and it took an age) and EEG. She was furious at having to stay in hospital but had to wait for the results which she wouldn't get until the Monday.

Monday comes around, mum was still confused, muddled and seeing and hearing odd things, but less so than previously, but the doctor did not speak to her or me regarding the test results - yet another night in hospital! Tuesday and the doctor comes around before visiting hours to say she was going home. By the time i got there, the nurses were readying her discharge papers and an hour later we were on our way home. The doctor was not available to speak to, and the only thing I can gleam from the discharge notes is that mum has suffered previous mini strokes that we knew nothing about and there is some slow flow in one of the ventricles of the brain. Everything else was 'normal' except for Mum's cognition which was slightly impaired (in their opinion) but greatly in comparison to how she was two weeks ago.

She is unable to recall much of the week in hospital, is still confused about the eve ts she can recall, and is still struggling for and muddling words.

We still have no answers.... and it's frightening to think this could happen again at any time. I believe her migraines which usually begin with zig zag aura have taken a sinister turn, but neither the hospital or her GP are in the slightest bit helpful!

Where do we go, and who can we ask who is knowledgeable in these kinds of migraines .... any ideas or advice is much appreciated.

[MaryF]

HI, unfortunately the medical profession including neurologists are not up to date with the disease written about in the link below, there are three blood tests, perhaps suggest she has all the tests. The migraines that come with this condition usually do not respond to standard pain relief, but normally to Aspirin or anticoagulants. I administrate a forum on this platform for this disease and also a trustee for the relevant charity GHIC.

the-rheumatologist.org/arti... MaryF

[Mummaru in reply to MaryF]

Thankyou Mary, I will have a good read in the morning x

[Joyceito]

So sorry to read this, sounds like you and your mum have been very badly treated by the medical profession.

I’m not sure where you are from or what your financial situation is, but would it be possible to get your GP to do an urgent referral to a neurologist who specialises in migraine. If you go private you will be able to see someone quite quickly ( my own cost £250) who will have access to all her results and can explain them properly.

You say your dad had a heart attack two weeks ago, and I wonder if the very bad migraines might be a result of the shock and anxiety of this event. Perhaps some anti anxiety medication might be of benefit if your mum and her neurologist/GP think this might be a factor.

Your mum is lucky to have such a good and caring family.

[Cally01]

Hi, this is just awful. Your all going through such a terrible time.

You definitely need a neurologist to look at your mums results and symptoms.

I'm thinking similar to Joycieto . I had a similar situation with my mother in law. This woman was never sick, very strong willed and independent, my father in law died suddenly, she started having migraines, panic attacks, confusion and insecure living on her own.

Go to the GP and see if hospital reports say anything and demand neurology see her.

Good luck.

[babs1234]

This sounds remarkably like what happened to my mum went to the docs one day and totally lost the plot there. Couldn’t remember anything and was totally confused. Eventually she started to remember and slowly got back to normal. A few months later in the docs in front of the receptionist just went blank and stared, receptionist took her straight through to the docs who said she was having a migraine, told her not to drive so she walked home. She has absolute no recollection of this, as it happens, it wasn’t a migraine, it was a TIA and. Three days later she had a major stroke. Don’t let them fob you off. Insist that she has her blood tested for her INR. If the doc had sent her straight to hospital and she’s had this test done, she probably wouldn’t have had the stroke. Hope she’s soon better xxx

[Quito]

Hi Mummaru, what a shocking experience for you all to have gone through. Thank you for sharing it. I would recommend (if you can afford it) going to the National Migraine Centre in London if you're in the UK. They can help talk through what happened and also provide diagnoses. Migraines change over the years, but that sounds like something so drastic that it's worth checking to see if that's a 'normal' trajectory. Take care xx

[kirstyo]

If her CT, MRI and LP are clear its very unlikely that there is something sinister going on. Some people have TIAs (mini strokes) and don't even know it at the time and its only found out as a incidental finding during a scan for something else (as in this case). You can get all of these symptoms with migraine, but its not very common and probably warrants further investigation, but isn't really something she would have needed to stay in hospital for. Hospital environments make these things so much worse as when people are confused the unfamiliar environment and strange people make the situation so much worse for the person and often results in aggression as you seen with your mum. I assume they will have recommended that the GP follow up, if not you should request this. You may also want to complain about the lack of communication from the hospital because that is not on.

[chrissy30]

Really sorry to hear all this has happened to your mum and the worry to you. As others have advised best to get a neurologist involved. One that specialises in Migraine. I've suffered from Migraines from a child which worsened as I got older. But this was due to undiagnosed Coeliac disease mainly. I was malnourished for years. I saw various people at the hospital and was 'enrolled' in the pain clinic. It was only my new doctor that got things going and sent me to a dermatologist clinic and it turned out I had Dermatitis Herpetiformis which previously had been diagnosed as psoriasis! This led to finding that I had Coeliac disease! Gastroenterologist told me that I'd probably had CD all my life. This all led to severe osteoporosis and now I'm suffering from a collapsed vertebra in my spine. Insist on seeing a neurologist who is an expert in migraine. I had 3 TIA's as well when I was 28, I'm almost 70 now. and that didn't seem to ring any alarm bells at the time and I was just left to get on with it. One has to sometimes be very firm with hospitals and doctors - in a polite manner of course. For my sins I ended up as a mental health counsellor and I used talking therapy and relaxation therapy with my patients back in the 90's which was very effective. Your mum could be really effected by your Dad's turn of health so maybe seeing a counsellor or mental health professional could help to at least let her talk out her concerns if necessary. I do hope that things do get sorted out for your mum. Migraine can give so many symptoms that can be confused with other things or wrongly diagnosed. Migraine can be very serious in older people with the risk of strokes more so. Sometimes it can be a battle to get people to listen especially with the state of our National Health system. Short staffed, overworked and not enough doctors. (Took 5 weeks to get my X-ray results of my spine back to my doctor's despite me being in really bad pain due to collapsed vertebra. Now waiting to attend Osteoporosis clinic. I live literally around the corner from our local hospital!

[Kathybishop]

I am so sorry to hear this! It’s so frustrating when medics just don’t understand the pain we get! You’re poor Mum has no answers and nobody seems to be helping!! I gave up on my GP a few years ago. I just read as much as I can , I’ve changed my lifestyle, my diet and luckily for me a combination of sumatriptan and Naproxen work! However I take it as infrequently as I can otherwise the body gets used to it and it becomes less effective! I’m so sorry! Migraines are a massive nightmare!! 🙁