Migraines and Allodynia: I’ve always suffered... - Thyroid UK

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Migraines and Allodynia

MissFG profile image
20 Replies

I’ve always suffered with severe migraines (always end up in A&E) but not too often once every 1-2 years but lasted 2 weeks until I got IMIGRAN Nasal Sprays. However over the past 12 months I’ve been getting cluster more milder migraines.

Over the last 6 months I can’t even tie my hair up without triggering a migraine, but I’ve realised it Allodynia. It’s now so bad and constant I’m not sure what I can do. Usually an immigran nasal spray helped but it doesn’t won’t go. I’ve sachets and pills but they’re not working either :(

Does anyone else get bad migraines and what have you found worked for you? And can hypothyroidism cause migraines?

FYI on ALLODYNIA:

Allodynia. Migraineurs often suffer from cutaneous allodynia – that is, sensitivity and/or pain when the skin is touched. Most common in women, it often comes during the headache stage of a migraine attack (if there is a headache at all), but for many people it comes before, and is a kind of "warning signal". The skin becomes so sensitive, that it may feel like your "hair hurts". Running a comb through your hair can be excruciating.

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MissFG profile image
MissFG
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Baobabs profile image
Baobabs

Hello MissFG, Yes I have suffered severe migraine since I was 10 years old. It was this condition that began to worsen that prompted me to seek advice from my GP who ordered bloods and my Hashi diagnosis was confirmed. Mine would last for days and nothing would relieve them. I would feel sick, dizzy and generally hung over. I have had everything on and off prescription over the years and nothing brought relief. Since being medicated for Hashi's things have improved although my levels are still not ok. Following allergy/food intolerance tests that confirmed a lactose intolerance my migraine has improved as I no longer have dairy. Not sure if this is helpful.

MissFG profile image
MissFG in reply to Baobabs

Thank you Baobabs!

Funny my GP suggested lactose intolerance but went down the usual route of testing for coeliac disease again which I don’t eat so won’t get a positive test.

Do you know how they test for lactose? I’m seeing my rhuemy at the end of the month as I also have nose sores both which are symptoms of lupus. There’s so much over lapping with symptoms it’s hard!

Baobabs profile image
Baobabs in reply to MissFG

Well, I felt very unwell following diagnosis and became worse like so many people on this forum when I began Levothyroxine treatment. I was so desperate to feel well, I grasped at straws and pleaded with my GP to do allergy tests. I have private insurance cover here in Saudi where I work so he ordered a whole list of food intolerance tests that were sent to Germany. Lactose was the only problem. I have suspected this for a long time and dairy would always trigger migraine. MissFG, my gluten and Celiac tests were negative and I don't think gluten is a problem for me but the more I read about its connection with leaky gut and as an autoimmune trigger it just isn't worth risking. I feel very passionate about this and personally think gluten is poison to the body, all bodies! There is so little the medics seem to be able to help us with regarding Thyroid disease I believe we must do all we can to help ourselves. Remember, the root of migraine is frequently allergy/food intolerance related.

MissFG profile image
MissFG in reply to Baobabs

I totally agree about gluten! The way it makes me feel it is poison. I think I’ll push for a lactose intolerance test. I was brought up on a milking farm and struggled so never really had much dairy but I have it in coffee and try to eat good fats so introduced cheese in my diet. Maybe I’ll cut it out for a week see if it helps. I do have coconut milk and almond milk. Just feels like I’m cutting everything out and it upsets me when I feel so restrictive!

I wonder what a vegan who eats meat and fish is called as I think that’s what I’ll end up with no dairy gluten refined sugar etc might have to make a name up! 🙈😂

in reply to MissFG

Was watching Dr Mark Hyman on public tv last week. His program was titled "What the heck do I eat?" He had some very good info re how to put a simple food plan together for ourselves esp with all the confusing, contradictory info out there. I liked that he didn't trash anyone else's healthy eating ideas. What I took away from it was this: I came up with a plan developed by me,for me re which foods might work or not work for me. I made it a priority to only eat foods I liked. Previously I was trying to eat recommended healthy foods some of which I don't enjoy. But I'm off-track. To answer your question, Dr Hyman came up with a term for himself. He eats mostly plant-based but does eat some animal products. So he coined the term "PEGAN" for himself. So I call myself that now. (A comb of Paleo and Vegan!. Works for me. All the good nutrition info out there can make for confusion at times. irina1975

Baobabs profile image
Baobabs

Apparently we were never meant as humans to eat dairy. Our stomachs are just not set up for the digestion of it. Folk can also be intolerant to casein, milk protein. I do believe some studies have been undertaken that suggest a link with breast cancer.

MissFG profile image
MissFG in reply to Baobabs

And the same with gluten and grains which is why I cut both out. I’m definitely going down the paleo route so need to get my books out for some recipe ideas and try to be more strict with myself

in reply to Baobabs

I agree.

Baobabs profile image
Baobabs

I am so with you when you say it upsets you to cut out so many foods. I work in an International school where food is so much part of culture and our upbringing. I try not to see my diet as restrictive but rather restorative. My springboard to stick with it is the lack of pro-activity on the part of the medical world I frequent. I'm not sure dairy fat is necessarily considered healthy but I'm willing to stand corrected.

Baobabs profile image
Baobabs

And by the way, refined sugar is one of the worst culprits for causing inflammation in the body. It happens to be in just about anything and everything processed.

MissFG profile image
MissFG in reply to Baobabs

Yeah I don’t eat processed only fresh clean food 😊

in reply to MissFG

Back to Dr Hyman's advice he included in his program (mentioned above). Choosing food to buy is very simple. Ask yourself in the supermarket:" Is this food man-made or nature-made? If nature-made feel free to buy and eat if you like it; if man-made, leave it in the store." (I paraphrased). Can't get any simpler than that. I liked his presentation because I can take anything simple (like food choices) and complicate the **** out of it.LOL. irina1975

Are you taking levothyroxine? From the day I started this medication I started to have migraines initially once or twice a month, then weekly and eventually after ten years on levothyroxine about two or three times a week! Once I changed to NDT I have never had another migraine. I am not suggesting that this is the case with you but just saying what happened to me

MissFG profile image
MissFG in reply to

I’m in T3 only x

Salslowthyroid profile image
Salslowthyroid

When I was first diagnosed with hypothyroidism I was only given 50 micrograms of T4. I was getting about two migraines a week. On the first day I was helpless and could only lie down and wait for it to pass. I could function a little the 2nd day, but still felt unwell on day 3. Once I persuaded my GP to increase my dose of T4 (and its been a battle ever since - 11+years) the migraines went away and I've only had the occasional, relatively mild one since. So in my case, at least it was most definitely related to hypothyroidism.

MissFG profile image
MissFG in reply to Salslowthyroid

Unfortunately I’ve had them since my teenage years so can’t put it down to hashimotos but it definitely hormone linked.

Paula101 profile image
Paula101

I too suffer with migraine. They used to be horrendous & tying my hair up would bring one on. Had them for decades. I too used Imigran but had allergic reaction so stopped using it.

However since going GF, getting Vits & Mins sorted my migraines have improved over time.

I'm conscious stress is a factor & try to help myself but easier said than done with a young family 😉

Its always been a certainty around the time of my periods that'll I definitely get a migraine.

Even then at the age of 45 I'm sure I'm starting with pre-menopausal symptoms such as going for 35/37 days between cycles. This has been the way for a year & a half. I'm sure this doesn't help.

Are your vits & mins at optimal levels?

I'm interested in Allodynia, I'll read up on that as I've not heard of it.

MissFG profile image
MissFG in reply to Paula101

I’m gluten & grain free and my FT3 and vitamins etc are all optimal. I’m also on the pill so don’t ovulate which suits me.

I’m meditating to help control my stress levels and coping mechanisms but do feel I have something I’m missing re:autoimmune that isn’t helping which is why I’m getting these migraines like this for the last 6 months which are increasingly getting worse.

It’s been constant now for about a month and nothing is touching them except dispersible aspirin and paracetamol which takes it off slightly but tying my hair up is impossible right now.

I’m used to very severe migraines where my body shuts down but these are different to what I’ve been used to. I can function but the constant pain is awful. I’m using heat bags and ice packs on the back of my neck which gives some comfort. Gabapentin helps me overall also.

I’m seeing my rhuemy Thursday so hope he can help. But worried it’ll just be another referral to neurology who last time recommended an Epi pen (GP refused as he said it was too extreme but he doesn’t see my migraines) or imigran which did used to help. I’m keeping myself hydrated too as I know dehydration can trigger migraines.

Think I’ve tried everything possible 😢

Paula101 profile image
Paula101 in reply to MissFG

It does sound like you've tried everything under the sun.

Is it possible your body is lashing out at the pill? Just a thought, I don't know.

Baobabs thoughts about lactose is worth considering & as you say you can ask for a test. If you don't ask you don't get hey 🙂 good luck with your appt.

MissFG profile image
MissFG in reply to Paula101

I’ve been on the depo now mini pill 20

Years with regular breaks and not had any problems.

Lactose tbh I don’t really eat much dairy so can go days but this is constant. So think it could be lupus or Sjögrens causing it I’m just waiting for a confirmed diagnosis.

Thank you x

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