chronic migraine / desperate / nortriptyline

[daisyji]

Hello lovely people.

I'm really desperate, I was admitted to A&E in England on Saturday as the pain was so bad. Jaw/face/neck/shoulders. They gave me a steroid and told me to get in touch with my GP on Tuesday.

I have tried most of the drugs years ago and didn't really stick to them that long as the side effects fro me were awful. I have two children and trying to keep my job.

I just don't know what to do. I can't stop crying from the pain, and I now feel really anxious, with terrible tinnitus.

Has anyone had any experience with nortryptyine please? Which is what I think they'll suggest.

I'm really asthmatic so can't take propranolol.

Thank you :)

I expect you've already tried rizatriptan and all of those similar triptans?

Topamax as a preventative?

I can't take propanol either.

For me rizatriptan with buccastem anti emetics with codeine for pain helps.

I now also have medical cannabis. Works better than anything else I've every tried. Sadly private prescription which means paying for it. But so worth it.
It has to be said I also have autoimmune mediated arthritis which is what the medical cannabis was originally for but the added benefit of migraine relief is fantastic

Thanks so much for getting back to me. Yes I’ve tried all the triptans. I was doing really well on medical cannabis but not anymore, feel like my health has fallen off a cliff. So pleased to hear that it’s helped you. I’ve got autoimmune hashimotos and Ehlers Danlos. I’m not convinced this is just a migraine as pain is so bad in my neck/ jaw. If you don’t mind me asking how did you get diagnosed with arthritis? Been in bed all day waiting for out of hours gp. Thanks again for your support x

I got put on Amitriptyline as a preventative which helped massively. Biggest turning point though was releasing a certain game I played was my trigger! Went cold turkey and I’ve only had one in the last few weeks! Definitely worth exploring the preventative options.

I am seen by a neurologist who only deals with severe migraine. I have been instructed to start taking the following supplements. There is apparently a considerable amount of clinical evidence that these do act as preventative for chronic migraine sufferers and even if uou do subsequently get headaches, the severity should be less severe and duration shorter.
vitamin B2 400mg a day
Magnesium 400-600mg a day
Feverfew 1 tablet a day.
Apparently they take 3 months for peak efficacy but do start to work before that. I was surprised to be told this by a top hospital.
Topirimate a preventative is also worth trying.
I've found eleytriptan, one of the newer generation of triptans to be the only one that works.
I've also been told to ensure never to rake painkillers fir more than 2 days in any month for headaches as they cause rebound headaches.

With EDS with might be worth seeing a really good osteopath (not chiropractor as they mobilise even over mobile joints) to have your neck checked as this can give time to migraines too.

Thanks for this! Mine are ramping up in frequency again so I’ll give this lot a whirl.

OP, I can’t help but I can sympathise. I hope you get some relief soon.

I was once given some dihydrocodeine by the GP.
They were too strong but did kill the pain.
I could just feel a mild throbbing sensation.
I now get paramol from a pharmacy which has a very much smaller dose in it alongside paracetamol.
sometimes a triptan works but when it doesn’t and I use the paramol but very sparingly and not very often as it can be addictive.

Chronic migraine sufferer here too. In the end I got Botox (done by an anaesthetist specialising in Botox for medical reasons, not by an aesthetician) and do weekly stunts in an oxygen 'tent'. I also pretty much gave up lactose when I realised heavy cheese days were coinciding with migraines. The migraines are reducing much more than they did with amitryptaline or propranolol, but mine feel very tension / inflammation related.

Hope you get some relief. They're awful. It's no life when you're suffering such pain consistently.

Always happy to chat if you need a friendly ear.

It sounds a bit like Trigeminal Neuralgia. Is that worth investigating? Would explain the jaw/facial pain. Sounds bloody awful

I’ve not had much luck with stuff from the doctor.

Now when I get one I take soluble solpadeine as soon as possible. I set up my bed with lots of pillows so I’m half sitting up and use cold gel packs and a cold wet flannel.

I hope you find something that helps.

@daisyji
I have ankylosing spondylitis. Diagnosed via X-ray and mri.

Shame the medical cannabis didn't work for you. I've found it close to life changing. Spending more than a decade in pain with very little sustainable relief, this has been great for me.

I wonder if you have TMJ as well. Perhaps look up the symptoms and ask your GP?

Thank you everyone for your replies - it's given me huge comfort on one of the worst days, I'm hoping the morphine from the Dr knocks me out, so pleased you are all finding your way through x

Watching with interest. I've just been put on propanolol and this has made me realise it's prob why I've become all wheezy...

Thank you everyone, I tried escitalopram on advice from a pain Dr who said it would be fine with morphine and diazepam but I had the most awful, terrifying reaction to it, all night panic attack, terrible hallucinations it was the worst night of my life. I know having Ehlers Danlos makes me more prone to drug reactions etc. I just feel like I'm going from bad to worse. I've just been weeping uncontrollably since Wednesday, feel terrible physical panic and anxiety, I haven't been able to go out and pick up my children, or look after them and work, which I know is a slippery slope. I never thought this would happen to me as I've always had a strong grip on my mind. I feel like I've had some sort of nervous breakdown. I guess I have to wait until I feel better before I try and go out to school etc, sort of feel I should push on, but I can't. I sort of feel that the panic is now far more of a concern than the chronic pain, but does anyone have any experience of well tolerated drugs that might help panic / pain. I've got a zoom appointment with a psychiatrist tonight, but I'm now nervous of drugs.. Any help so much appreciated, I just want to feel like myself. Many thanks x

Hello, I have chronic lower back pain but also bra strap upwards pain radiating into shoulders and top of arms. I was prescribed Nortriptyline by consultant for pain. I can take up to 50mg daily. In reality I can only take 30mg as I have to drive several hours daily and side effect of medication makes me drousy, thirsty, vivid dreams and eyes and skin a bit dry. The tablets do help with pain though. Not certain but I think they might relax muscles a bit. On holiday when I did not have to drive because DH drove, I took 40mg and pain was a lot better. After holiday had to go back to 30mg and really noticed pain was worse. I am just so worried about falling asleep at the wheel. I fall asleep after work sitting on sofa for about 45 mins most evenings. This is with 30mg. If you don't have to drive they may work for you. I can put up with being thirsty as just drink a lot of water.

Hi Op I've had similar for years and finally got to see a headache specialist 4 months ago and have now started medical Botox. Due to have my second round tonight. I too had awful neck and shoulder pain with my migraines and the Botox has helped so much with that. It's pricey though but I was at my wits end.

Oh and meant to say my dentist thinks my jaw and facial pain is due to teeth grinding and jaw clenching so is making me a mouth guard to try

I managed to stop my migraines[including visual disturbances sometimes] by keeping my upper body, especailly shoulders, a lot warmer than I was doing.
And especially during the night.

May not be the total answer for some, but massively helped me personally.

Botox - for migraine and teeth grinding was a life changer for me.

I also had physio which uncovered a load of muscle issues in my neck and shoulders.

That and the botox liberated my tense muscles which were causing chronic pain.

Hello! Sorry you are suffering, it’s horrible. The only thing that worked for me was lamotrigine. I now only have hormonal migraines twice a month, and for those I take frovatriptan, which is longer active and kicks them out within a couple of hours.
I’ve also heard people having success of candesartan too.
Keep pushing, it’s no way to live. I hope you get better soon!

Agreed there are many many preventer options so there really is something for everyone.

I also have a Cephaly device which is very good.

Is Botox an option? I have a TMJ disorder, which causes tension headaches, shoulder and facial pain, and tinnitus. Physical therapy and Botox have been life savers in that sense since surgical outcomes would be iffy.

@daisyji how have you gone on? Is there any update?

@daisyji sorry haven't read all of the other replies but is there any chance it could be a problem with your jaw (TMJ disorder or similar)? I have TMJ disorder and when it flares up the pain can be horrendous, it goes from the top of my head to my shoulders and I could seriously cut off my head.

I've had botox twice now in my jaw and it has really helped to loosen things up plus when it was bad before Christmas I had some physio which worked really well. Apologies if I'm way off and giving pointless advice.

I also take Nortriptyline for IBS and abdominal pain and it really helps with the pain.

Fingers crossed you find something that helps.

Thank you so much, I definitely have TMJ - severe cross bite etc, botox made me worse sadly, so please its' helped you though. I've been advised it could now be neuroplastic pain in part, with centralised nervous system is switched on for no reason, creating severe pain. Thanks for your reply

If you've failed three or more preventatives you may be able to try one of the new anti CGRP drugs, which are monthly injectables. Would need to be prescribed by a neurologist, it might be worth looking at the criteria used for prescribing these and asking for a referral if you think you'd meet them.