Running out of options... what next? - National Migraine...

National Migraine Centre
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Running out of options... what next?

Chronic migraine sufferer, was managing fine since being diagnosed back in 2014 after prescribed toprimate. Diagnosed after having meningitis, though not conclusively linked but consultant said because not had any previous record of migraines it was 'his opinion' highly likely a link.

Fast forward to november 2017 and VM and this knocked me understandably for six. Toprimate increased to maximum dosage as increase in migraines.

September 2018 migraines at best 4 days out of 7 in week whilst on maximum dosage of toprimate - propanolol tried alongside- extremely ill - vomitting- etc

November - present pitofitzen- same effects as above taken at night as zonks out.

Migraines I would say have reduced by a couple in a week but overall not much different than before if I was really honest.

Been back to Dr and he has referred to consultant again.

In a nutshell, the preventative betablockers all seem to make me sick, dizzy and or very very tired.

Any advice

15 Replies
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Hi can you qualify for Botox? I’m in beta blockers too but now don’t feel the fatigue anymore after three years or so but first six months or more was exhausted indeed. Also what about the new calcium peptides out of Europe?

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BOTOX could be an option, depends what the consultant says. When I was ill back in 2014, after being in intensive care (lucky to be alive to be honest) I was left with chronic migraines hence the toprimate.

I also have been left it would seem to be intolerant now to a wide range if medication. I have never been able to take anti biotics.

I like in the UK so a lot of drugs available are not permitted here that are allowed elsewhere.

I am hoping that there will be options.

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Please please please try and push for botox, i have Hemiplegic Migraines and it completely saved my life. Good luck

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Candesartan (brand name is Atacand) has done wonders for my migraines. I've thrown up once since January 14, 2014, when I started it. It's a blood pressure medicine, but I don't have high blood pressure. I take a 4mg pill and take 1/2 of it every day. It has CHANGED my life.

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Hi do you get aura migraines? And does this medicine help if you do?.

Thanks

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I have only had an aura twice that I remember. One time, I wound up with a headache and vomited. The other time, nothing happened.

Good luck with your headaches.

👍🏻👍🏻👍🏻

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I've had amazing success with Aimovig I've had 4 monthly injections. Before, I took 18 triptan per month. After, I've taken a total of 7 triptan in 3 months, and only 1 in the last 7 weeks. My migraines are related to scoliosis and resulting muscle strain and nerve overload.

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Can I ask where you live headachequeen? Aimovig sounds wonderful? Might enquire about it but when I have done a quick search, I think I would have to pay privately for it ? Only became licence in UK in summer and think it's private not NHS. Might be wrong though.

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I'm in the US. It has been available for about six months here, I believe. I pay $500 a month until my deductible is met, but luckily I can swing that. Aimovig also has a program that will get you five months of injections for $5 a month, but then you would need to figure out the remaining 7 months.

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I'm on just pizotifen 1.5mg daily taken last thing at night. Really difficult to start with due to side effects, I would urge you to persist as now I am used to it it has changed my life. Battle through the lethargy, nausea etc as in my experience they did ease off. No pain no gain as they say.

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Hi, I was having headaches daily and of which were migraines about 5/7 days a week. I had a greater occiptal nerve block (GON) done on 11th December 2018 on my left side ( I always have left sided migraines) Had a rough week and a half following with stiff neck , 3 migraines and associated sleep problems, though I was told to expect some discomfort while nerve was soaking up the steroids.

But this week just gone I’ve had 4 very low fuzzy headaches which have been a dream! And the one migraine i did have I was able to halt with Rizatriptan. Especially with all the Christmas antics, I also snuck in some normal trigger foods 😃

This GON was suggested by my NHS neurologist at my follow up appointment Dec 2018 ( first appt was Jan 2018). During which time I had to reduce my use of acute medications to ensure that I was also not having medication overuse headaches.

I had previously taken tried Amitryptyline, nortriptyline, Gabapentin and Pregabalin ( originally for my fibromyalgia, but did nothing/ if not worsened my migraines) I also was recently diagnosed withh PCOS and wanted to start planning a family so explained why I did not want to take any potentially tetragenic medications.

The GON is also one of the few treatment options that are considered safe throughout pregnancy. I hadn’t read about the treatment until my neurologiat suggested it.

Hope this might be an option that would be available for you to try.

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Thanks for all your replies. I am just in a bad way to be honest at the moment and I am willing to try anything to try and manage the have to say daily migraines.

Toprimate was working fine for 3 out of the 4 years until I would say the viral meningitis back last year and it knocked me for 6. Since then the headaches have been increasing. October I was in a bad way again and ended up in bed for 9 days due to a very bad attack. I should have gone to hospital but due to family reasons (daughter has complex needs) decision was made to stay at home.

Propanolol - does not agree with me at all

Amitryptyline, - took 4 years ago had to stop taking within a few days as very bad adverse reaction

pizotifen - makes me a zombie even if I take at night

I will put up with nausea etc if migraines reduce nut the preventative medication are not reducing the migraines.

Alongside this is the muscle / neck ache intolerance to lights etc.

I also have to say that all the advice on here is wonderful.

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Go on a super food practically vegan diet no alcohol ,sugar or wheat ! Tough but worth a try . It’s helped me ! But make sure you get all your vitamins including vitamin B 12 with which you will probably need to supplement

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Thanks, I dont drink alcohol at all, sugar is limited as I am diabetic (was never at risk before 2014 at being but one of the things the BM left me with). Will look at cutting wheat out. Like I say will try anything. I am hoping it isnt long before I get to see the consultant as in the past week 5 days in bed really due to migraines

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Oh and you have to drink this super anti inflammatory food daily. Boil water or heat up any non dairy milk add in a smal teaspoon of turmeric ginger and cinnamon. Add small bit of honey if desired. ( this and maple syrup is only sugars allowed) Turmeric and ginger acts like an anti inflammatory drug ! But much cheaper! Go organic as much as you can!

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