Migraines changing

I'm a 24 year old Staff Nurse. I have been off sick for 3 months due to severe migraines. When I struggled with them while working I would feel photophobic (sensitive to light), sensitivity to loud noises and nausea. I would sleep for hours after or before work to cope with them. They would only last until I slept, and the pain would be localised to the back of my head.

Since being off sick, sleep doesn't ease them anymore. And they have changed. I feel pre-migraine constantly, with no let up. And the pain feels like my skull is being crushed. I have tried sumutriptan, zolmitriptan, immigran, pizotifen, high doses of aspirin, ibuprofen, propanolol, tompiramate. Nothing works!!

Some days I can't drive, can't speak properly as if my brain can't function,I'm lethargic and in total agony. I use a tens.machine for my back and neck pain.

I suffer from tinnitus,nausea and my temperature is totally uncontrollable.

I have tried herbal and alternative therapies but with no success!

I am waiting to see a neurologist but I'm not sure what to expect!

Is there anyone like me ? Can Anyone offer some advice??

7 Replies

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  • Hi I feel so sorry for you as I too have suffered with chronic migrane and trigeminal neuraglia.

    I worked in the NHS and my manager was not understanding about my illness and added more stress for me trying to get rid off me which made my migrane worse. I ended up leaving after 20 years. I have been under neuro dept for now my 3rd year I had severe pain nausea tinnutis

    and facial pain along with spinning feeling. I had suffered this for years and had no idea it was migrane as I was treated for sinusitis all the time with anibiotivs at the GP. Until in my last job which I was in a contract for a year nearing the end of it I could no longer cope and I think was on the verge of a breakdown as I didnt care about anything anymore as I was in so much pain.

    Finally after going arounf the house ie ENT/ MAXFACIAL I end up at Neuro which resulted in around of drugs which didnt work then I had 4 Nerve blocks in the back of my head which was allright for a couple of weeks but it came back. Next I had 2 lots of 31 injections in my head and forehead I looked like I had done ten rounds with a boxer. Now having nothing for a while its settled down and I now have trigeminal neuraglia to deal with on pregablin at the moment waiting for a Pain Clinic appt. No one understands as to look at I look ok but they cant see the pain I am in everyday. Movement for me makes everything worse I had a really bad bout the other day vomitting the room spinning awful just hadto stay still most of the day. Try those patches for migrane on the forehead also a ice pack ask the doctor for lidocaine patches for back of head/neck. Watch what you eat keep a diary I know drink and chocolate are problem for me. Keep to a routine for bedtime early to bed get plenty of sleep. I have had all you mentioned and more also my left eye has been affected vison problems as well.

  • Sorry to hear how ill you are. As I have had very similar symptoms I can empathise. Although I had migraine from age 14, and it worsened after a head/neck injury, along with chronic fatigue symptoms, what I experienced beginning nine years ago and ongoing was even worse, different to my previous experience and very much like what you are going through now, including vomiting, and waking in the morning with migraine already out of control. Medication doesn't work or has unbearable side effects. I have been fobbed off with 'stress' 'age' and 'hormones'. Don't let this happen to you. Make a list of your symptoms and timings of your headaches to take with you to the neurologist. You should have an MRI to rule things out if you haven't already. Unfortunately there are many other conditions as you probably know which can cause these kinds of headaches and it can be hard to get a diagnosis.

    Personally I have experienced some improvement by following a strictly gluten free diet which has in general improved the nausea and vomiting and migraine aura. I have improved further after taking time release vit B2 for three months (takes time to work) after a GP told me this helped his own migraines, and also bromelain. In previous years I tried every complementary therapy, even qualifying as a practitioner myself. I also take various other supplements after research, trial and error. However, the neurologist I eventually saw only recently informed me any improvement after taking a vitamin supplement was due to the 'placebo effect'.

    Adding together the days of migraine over the last year, I found I spent four months of the year with migraine, but this is an improvement over every day. The added problem is the unpredictability of the attacks, in terms of timing and intensity.

    I hear the National Migraine Centre is very good, once you are certain it is migraine, and there are electronic devices which I have not tried, such as Cephaly, which some people find helpful.

    But first what you need if you can get it is a proper medical diagnosis to rule things out.

  • I am very sorry for all you are experiencing. The National Migraine Foundation is a good source for information. That is where I finally found a name for my very rare type of migraines. Knowing how many People are out there with "migraine disease " made me feel less alone. I would recommend their website.They have a monthly newsletter where they focus on a particular type of migraine. You can become a member, but it is not required to receive no from them.

    Your Neurological is your place for medication. and hopefully all the answers you need. For me, I always had a good diet, but I realized that processed foods were a trigger for me. Eating clean has eliminated my migraines (so far ) and my my hospital admissions. I have become quite creative and enjoy what I'm eating. I hope you have some.relief soon!

  • Thanks all for your help. I've got the doctors Friday for review and a reflexology appointment Monday.

    Feel so much better that I'm not alone!

    One further question, is it still classed as a migraine if your constantly feeling pre-migraine?

    Thanks all

    XOXO

  • As far as I know, yes, it has become 'chronic migraine' which used to be called 'transformed migraine'. But I'm not a Dr.

    When I was very anxious about my new and increasing neurological symptoms, one GP told me migraine doesn't stay the same throughout your life but changes.

    I am also trying to look into B12 deficiency but it seems the current blood test for B12 is inaccurate so this is not easy.

    By the way migraine.com is an interesting blog for reading about other people's experiences (if

    you are well enough to spend much time on the internet).

  • See a cardiologist, arrange to be checked. I had a PFO. Contact the Migraine centre in London, they may be able to help you. I had open heart surgery to repair the hole. It can be repaired keyhole surgery depending on the area of the heart.

    I wish you well.

  • Hi I have what they call chronic migraines 24/7 and have had the headaches for the last 8 years and I too have tried all sorts of medication/remedies (propanalol, pizotifen, amytryptline, nortryptline, topiramate, sodium valproate, pregablin, gabapentin, codeine phosphate, naproxen, arcoxia, ibuprofen, paracetamol, oxygen, oesteopath, acupuncture, physiotherapy, anti inflammatory diet. When I tried Topiramate previously it made me a bit confused and I was unable to function properly, so had to give that up as I had a job to do. I have been signed off for the last 3 months for the first time over this period as I can't cope any more and no medication is working. I have had a session of botox which hasn't helped so far. However, I have recently had my second MRI scan and a cavernoma was found in my brain and upon doing a lot of research, many people with cavernomas suffer from headaches/migraines. When a neurologist that I saw (not my usual one as she was on holiday) he looked at my previous MRI 6 years ago and it was there also and was never picked up on.

    While you are waiting for your neurologist appointment, maybe you could ask your GP to refer to the hospital for an MRI scan seeing as things have changed.

    When you see the neurologist they will ask you about the headaches when they started how often you get them what they are like etc and will do a few test and will probably suggest Gabapentin and maybe even Botox.

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