Migraine + RLS: Neuro Referral: What are the options?

[Doggywalker]

Hi. I have suffered with migraine since my teens and Restless Legs Syndrome since I was about 40.

I'm currently on topiramate, I've been on it for a few years. 50 x2 / day. I take sumatriptan when I get a migraine and find it effective.

However, this doesn't really give me the control that I'd like. I still get, on average a migraine a week. I have already tried amitriptyline and I'm currently trying propanalol. Both have made my restless legs unmanageable.

My GP said when I started the propanalol that if this didn't work then I would be referred to a neurologist. Please can you folks tell me what the options are (in the UK) that a neurologist could prescribe? It would be extra helpful if you know, which would not make my restless legs worse. Virtually everything I've tried recently does!

I also have underactive thyroid (Hashimotos), IBS(C) (ie I have very low motility and I'm intolerant to lots of foods: gluten, dairy, maize, soya and a number of others), non epileptic seizures.

I'm not sure about botox or acupuncture because the last time someone tried acupuncture on me I had a seizure.

[Cat00]

The neurologist can offer actually a huge amount of things, there are many meds still you can try. There are the injectables, Botox you already mentioned, there are nerve blocks and then there are all the newish class of drugs the CGRP'S that come in injectable and pill form. I'd be surprised if acupuncture would be offered though.The trouble is very chronic migraines are very drug resistant so are very hard to treat. I've tried at least 20 different meds over the years, so how well they work is one thing but there are certainly a lot of options.

[Onthemove1971]

I so sorry you have to deal with this. Have you tried Magnisium as a preventative? I also take Feverfew 2x daily.

I take Magnisium glycinate 3x daily 500mg this has been life changing.

About 3 months ago I started on Amjoy and this has almost stopped all of my migraine.

Also I take Imitrix as a injection when I need it.

The other thing is I started using peppermint oil and it has really helped me a lot.

One last tip.. do you know about thr Podcast Heads-up? It has really helped me a lot.

Good luck

[Doggywalker in reply to Onthemove1971]

I have to be really careful with taking supplements. I've recently tried a supplement and just ended up with an ever increasing spiral of migraine so had to stop! I am so sensitive to any sort of side effect from medication or supplements. With money so tight I don't want to pour money away on supplements I can't take.

[penelope2]

Hi DoggywalkerI had migraines for 20 years.

Had ibs for most of my adult life too. What interests me is that you are gf, df and soy and corn free too.

Now I have gluten ataxia and the one big thing that is helping, the last MRI confirmed this is a TRUE gluten free and non processed food diet.

A true gf differs a lot from a traditional gf diet. Most gf processed food contains fillers, emulsifiers and cheap ingredients that replace the gluten .

Research Peter Osborne in US and it might make sense to you.

Just be aware of those food intolerance and watch gf oats tooi am on no medication and no migraines now, the occasional digestive problem caused by eating gluten by mistake.

Gluten ataxia forums are full.of people on restrictive diets.

Coeliac UK have neurological problems on their website that can arise from gluten intolerances and sensitivity.

The NHS are very sceptical with this way of thinking.

Good luck.

[Doggywalker in reply to penelope2]

That's interesting Penelope because, basically due to my intolerances, I eat very little in the way of processed foods. I make my own bread, I have some rice cereal and everything else is meat, fruit and vegetables. I cannot/do not buy anything pre made apart from the cereal. What do you eat for breakfast?

[penelope2 in reply to Doggywalker]

Hi Doggywalker, have read your profile and yes quite similar to mine in that I'm DF, GF and UPF avoid too. My journey is so.ewhat different to yours though. Out of desperation I too self diagnosed gluten was the problem . Had a CYREX test and then went DF too. The early symptoms of gluten ataxia started to creep back, pains, stiffness of legs, brain fog, fatigue and now grain free and avoid processed food too. A very restrictive diet and still trying to introduce some variety.

Breakfast is a problem, not least as I take a long time to get going and not enough energy to get much.

Coconut collaborative yoghurt, berries or fruit of some type, toasted almonds to up the protein.

Eggs are great with spinach or mushrooms and tomatoes or leftover veg from day before.

Homemade granola with, lots of nuts and seeds.

Savoury omelette.

I don't eat any gf bread, gf oats or gf substitutes that most people eat on a traditional gf diet.

No rice, just starting to try quinoa.

I do eat sweet potato in various forms.

Polenta in small amounts and coconut flour makes muffins and cakes.

Gluten ataxia is a neurological autoimmune condition that effects the cerebellum, balance centre in the brain.

With years of a leaky gut and dysbios leading to autoimmune.

Very few neurologists or specialists believe it exists so having to treat myself.

But my last MRI showed an improvement which I expect they are surprised at given my age is against this.

So that gives me the motivation to continue with this eating regime.

Best wishes to you.

[penelope2 in reply to penelope2]

I soo miss walking my dogs in the countryside. It is good for the soul.Balance issues mean I need to keep to a smooth surface now and short walks taking my hubby's arm only!

[Doggywalker in reply to penelope2]

Thanks for your reply Penelope. I was struggling to find details on this.

Sadly I can't eat coconut, eggs (in quantity) or most nuts either! I guess I keep to my puffed rice, pumpkin seeds & dates for breakfast.

I also don't have a dog at the moment, but have had many in my lifetime. They make such wonderful companions, don't they! I hope to get another soon. Just waiting for things to settle down in my life and with my health a bit.

Wishing you all the best.