Feeling Desparate: Specialist query and preventives

Hello all,

Just had my worst attack in a while, mine increased in August. I began amiptryptaline as a preventive 2 weeks ago, doctor said to increase dosage from 10mg to 20mg if they got worse, this feels like worse? I'm led here feeling like a ton of bricks. I keep reading it's best to see a specialist but I don't get what that means? I saw an NHS neurologist once and it was nothing special, she also has a huge waiting list so I wouldn't be able to see her regularly. Just want a consistent source of help.

Any input/suggestions? I started taking supplements 1 month ago, doing yoga etc. So scared that this is my 'new normal'

[kellythomas]

Try a Daith piercing I truly works

[barbara1949 in reply to kellythomas]

HI I HAVE JUST HAD ANOTHER BOUT OF MIGRAINE WAS SHOOTING PAINS IN MY ONE EAR THIS TIME ALSO FED UP OF THEM NOW AM ON MEDICATION FOR ANXIETY AND STRESS DEPRESSION I AM WONDERING IF ANY OF THE TABLETS I TAKE CONTRIBUTE TO THEM I TAKE LORAZAPAM DIAZAPAM LOFFRAPRAMINE PROPRANALOL IF ANY ONE TAKES THESE PLEASE WOULD LIKE SOME REPLIES THANKS

[Hidden in reply to barbara1949]

Hi barb maybe try partying this as a separate post as people are more likely to see it that way? Hopefully someone can help you

[barbara1949 in reply to Hidden]

HI THANKS BUT NOT SURE HOW TO DO THAT XXX

[Hidden in reply to barbara1949]

In the upper right hand corner is a button that says 'Write a post' x

[Watch_it_unravel in reply to barbara1949]

Propranolol is a migraine preventative. Do you take all those benzos at once?

[Hidden in reply to kellythomas]

Already have one so no joy for me unfortunately, but glad yours is helping!

[kellythomas in reply to Hidden]

Did you try getting both done sometime the one is not enough. Best of wishes

[Hidden in reply to kellythomas]

I've just got the one right now, that's interesting to hear I hadn't heard that before

[Hidden]

Hi Willowsarah

So sorry to hear you are having a bad time with Migraine at the moment.

I had a very positive experience with Amitriptyline, after visiting the National Migraine Centre for help, but you might have to keep increasing the dose VERY slowly as I took 50 mg. three hours before bedtime daily to get the maximum benefit and I understand that is the recommended dose for the best relief. Maybe speak to your GP and see if you could increase your dose.

Good luck 👍

[Hidden in reply to Hidden]

Thanks penny, I do know I need to be patient but as you can see I'm struggling to be! In just about to increase to 20mg, also going back in to citalopram as I came off that a month before this issue started so wondering if that would help too. Thanks for your sympathy

[Cat00]

Hello,

You do have to wait for all these things to work, for supplements that can be 6 months and for drugs like Amitriptyline it is likely to not reach full efficacy for 6 weeks. That is not to say you won't feel any benefit before then just that they will not be up their full potential and therefore you won't be able to tell if they are working or not. With Amitriptyline you can be given between 5mg up to 500mg depending on your condition, I am on 175mg but 20-50mg is a typical dose for chronic pain, 400 mg is typical for an antidepressant dose.

In the old days a neurologist was the only one really qualified to deal with migraines but in recent times the model has changed somewhat and more GP's are being educated in how to deal with them. If you have a good GP then it may be fine, I have very chronic migraines and have to see a specialist neurologist but this is in part bc they are the only people in my area qualified to give Botox but it really comes down to where you live in the end as to who will be appropriate for you to see.

Good luck,

Cat

[Hidden in reply to Cat00]

Thanks cat, I do know these things take time but it helps to hear it when I'm feeling that desperation. I've managed to find a nice GP so think he'll have to do for now, just helps to know there's not something really obvious I'm missing when it comes to who should be in charge of my care. Thankyou

[Cat00]

There is quite a lot a GP can do these days just because a specialist will have expected you to explore the obvious drug choices first before they'll consider you for more drastic treatment. It is right that you should make sure you are taken seriously bc early treatment can prevent these things becoming more chronic so hopefully if your GP starts to feel out of their depth they will refer you to a neurologist esp if might have other complications.

I hope someone has told you you shouldn't be taking painkillers of any kind on more than 8 days a month (for me they say 6 for some reason!?) Just because painkillers can cause 'rebound' headaches which will mean you have way more headaches in the long run. It would also be helpful for you to keep a headache diary which states whether you have a headache, how bad it felt on a scale of 1 -10 and whether you took any meds for it. This is something a specialist would expect to see and will also make it easier to argue your case should you need access to a more expensive treatment down the line. Also it gets very hard to remember how many painkillers you take especially since your memory can be so badly impaired by constant pain!

I never knew anyone who had as many migraines as I did until I came on this forum, its been helpful to know im not going crazy and this horrible condition is actually real.

Xx

[Hidden in reply to Cat00]

Hi Cat,

I know what you mean, I always felt like I was treated like an outlier only to come here and realise we're far from alone! I hope yours are well managed? Thanks for the info on rebound headache, being on these forums is the first I've ever heard of it and I'm glad I know sooner than later. Hope the botox is helping you

[Cat00]

Botox is great, nearly halved my migraine frequency sadly haven't been able to have it for two years because of trying to get pregnant/being pregnant but once I have this one and finish with breast feeding I'll be straight down to the hospital with a massive smile on my face! I'm 40 now I've had migraines since I was 5 they have got gradually worse as I've got older, I think I've seen 20 doctors, I've had at least 5 neurologists and I think last count I'd been on nearly 20 different meds, accupuncture, meditation, exercise, GON injections etc etc!

I have a great specialist now, I had to fight for 6 years to get her, I moved around a lot over my life so thats probably why its been a bit crazier for me than for most. There are some new meds that are going to be coming into the market over the next few years, these will be the first ever drugs made specifically for migraine so there is hope there too for us all!

[Hidden in reply to Cat00]

Yes so excited for those - you're very strong, if I found something that helped I don't think I could stop so I'm v impressed! Did anything particularly help for you? It's crazy how many things that are to try

[Cat00 in reply to Hidden]

Well we waited til I was 37 to have our first child, we kept hoping I'd get better! Started fighting for Botox 4 years before NICE guidance finalling accepted it and then had to wait another 2 years before I found an NHS doctor who would do it by which time I was 6 months pregnant. We'd already put off children for 2 years bc I was desparate for Botox but thought we couldn't risk any longer bc of my age. They made me stop breastfeeding at 6 months bc my migraines got so bad, so then they could start Botox. The first session made me even worse but the second time was amazing. I also went back on Amitriptyline 175mg and triptans. I love Amitriptyline bc it helps me sleep and I am an insomnic. I also did a 'living with pain' course which I think ultimately made me fight it all a bit less. It's a slow process really, if it doesn't go on for that long you don't have to change your attitude too much but once it becomes clear that it's not going away you do have to make some pretty major personality adjustments if you want to find any peace!

[Hidden in reply to Cat00]

I'm glad the ami is helping you; i just upped to 20mg and feel like i've been hit by a truck, hoping i improve soon! Thanks for your in-depth replies

[babs1234]

Hi. How often do you have a migraine.? Are they daily, weekly, monthly. Mine were almost daily and I was referred to avheadache specialist who diagnosed Hemicrania Continua. Anything over 15 a month you can request he Gammacore trial. It’s for 3 months and if it helps you can get it on the NHS. It has helped me with frequency and intensity. See if you can get you doc to refer you ...good luck . X

[Hidden in reply to babs1234]

Hi babs, mine used to be monthly but this latest cluster has been at least weekly. I'm so glad you've found something that helps you