Migraine and neck pain: First time posting... - Endometriosis UK

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Migraine and neck pain

Lolabelle2112 profile image
10 Replies

First time posting

Just want some advice

So I’m on pregabalin 150mg and codeine I’m basically in pain everyday it’s exhausting

I’ve been particularly bad and had pain killing injections into my neck and shoulder (I’m a migraine sufferer with bad neck and shoulder pain) well since having them done my pain is worse - I’m taking my usual codeine and also have some tramadol 100mg which I’m taking at bedtime - does anyone else have any help or advice to help get rid of this pain I’m so tired of it

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Lolabelle2112 profile image
Lolabelle2112
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10 Replies

Have you considered acupuncture for your migraines? X

Lolabelle2112 profile image
Lolabelle2112 in reply to Lizzielizzielizzie

Yeah I have and it it just triggered the biggest migraine I’d ever had! Was so disappointing - I’m under the care of the pain clinic now

I’m going to try yoga hoping that helps x

tjacbaby78 profile image
tjacbaby78

Ice where ur neck and scull meet cereblum or cranium not too sure and feet in cold icy water f 5 mins and also Indian head

JackieBo profile image
JackieBo

Hey there Lolabelle, I also am a chronic migraine sufferer and mine sound similar to yours - they stem from severe tension in my shoulders and neck muscles, so much so that I can tell when an attack is coming because my right shoulder starts to lock up, which spreads into the muscles on the right side of my neck.

Like you, I've tried acupuncture once - I blacked out during the treatment, which was apparently NOT supposed to happen and then I had a migraine to end all migraines. I haven't went that route since.

As things with my body have gone south due to what is suspected Endo (my first lap is coming up in December), my migraines have grown in frequency. If I have a group of days that are particularly hard, once those days have passed, then comes the migraine. I try to be conscious of how tense I am when the pain is bad, but I guess I still lock up unconsciously and then, once the reason for the tension has passed, the migraine comes on.

I too am on nearly daily codeine at this point as I have waited to go see a doctor until things got so bad, my life pretty much trainwrecked. I've had difficult periods since I was a preteen 20 years ago and the chronic pain has only grown more constant and more intense over the last 10 years or so. Stupid me waited until my daily pain level went from a 2/3 to a 7/8 before I ever went to a doctor.

Anyway, I take Migralieve to treat my migraines and it does seem to do the trick, but only if I catch it early. Also, I keep a store of Lush bath bombs on hand so I can take a really relaxing hot soak on the worse pain days to help ease, not just the current pain, but also my tense muscles.

(My favourites for this purpose are the Big Blue and the Avobath. Neither are floral or perfumey. The Big Blue has sea salt and smells like watery heaven - here's the info from Lush's website: "Big Blue’s key ingredient is a type of kelp called arame seaweed, which softens in your hot bath water. Arame is rich in vitamins and minerals including iodine, which helps to regulate the metabolism. Sea salt softens the skin, helping to remove dead skin cells, while lemon oil clears the mind and, like lavender oil, is antiseptic and cleansing." And Avobath has lemongrass, avocado, and olive oil for super soft skin and a really light, refreshing fragrance. Of course, you should get whatever smell you prefer - I also adore Twilight - it's packed with lavender and is sooooo soothing before bedtime.)

I have been really stepping up the amount of baths I take for this very reason and it seems to help ward off the migraines that specifically come after a few bad days of pain. The bath bombs, I think, really aid in the process because the essential oils are giving you some aromatherapy while the heat from the water soothes your muscles. I turn the lights off, light some candles, find some new agey instrumental music on Spotify, and indulge in a quiet, dark, soak. Singing bowls are very gentle on the pre-migraine senses and you can find a few playlists online. It isn't just about a hot soak, it's about treating all your senses as you'll know only too well how a migraine cripples all your senses.

When you feel it coming, get something cold on your forehead and the back of your neck. Heat is only good for preventing. You need cold once it's coming on. I bought myself an eye mask with chillable inserts that I keep in the fridge. I ordered it off of Amazon for about £6. Cooling off your eyes and forehead really is key.

Other than that, if I can't catch it early with migralieve and chilled washclothes or frozen ice packs, then I'm down for the count. How great is it that we can go from being bed bound for 3,4,5 days from Endo related pain, just to go down again from a migraine. Ain't life grand? 😐

Best of luck, doll! You're not alone in this.

Lolabelle2112 profile image
Lolabelle2112 in reply to JackieBo

Thank you so much for that reply

I’m so sorry you’re feeling like this too

For me I can’t have anything cold on me when I suffer I only can tolerate heat it’s weird most people seem to want cold if just intensifies my pain

The injections in my shoulder and neck on Friday seem to have done something bad to me it’s just killing me

I’ve taken far too much codeine really but I just need relief from it

How do you cope day to day? How much codeine per month does your doc prescribe? I’m on 150 30mg a month but I can go through that in two weeks easy some months it’s just horrible I just want a pain free life xx

JackieBo profile image
JackieBo in reply to Lolabelle2112

Honestly, hun, while my pain levels suck, it doesn't sound like they're quite at your level yet. I get the 30 mg cocodamol too, 65 in a script and that'll last me 3, sometimes 4 week. I've never taken more than three in a day as they make me SUPER nauseous. I also smoke pot daily. It helps A LOT with the cramping and nausea. I got myself a vapouriser so I wouldn't be inhaling smoke anymore to protect my lungs, but still get the helpful benefits from it. It just amazes me that such a helpful plant is deemed "dangerous".... it also helps with the mood. It's hard to be depressed when you're giggling at everything. And it also really helps with the appetite. I have to eat to not get sick on the pain pills, but my appetite disappears when the pain is high. Everything I eat is like sawdust in my mouth... smoking helps. Munchies for the win!

Honestly, from what you're saying about the pain you're in after this injection, it may be worthwhile to call your doc and tell them what's going on and get their advice. I don't know anything about that shot, but surely you shouldn't be in excruciating pain after it??

As for coping, I haven't been to work since Thursday. I called in this morning too. I shouldn't have tried Thursday, but I did and I paid for it after. Spent the night writhing in agony, no exaggeration. Friday felt like I had spent the night getting beaten up so I stayed down to recover, spent the entire weekend in bed, and still didn't feel up to face the world today. I've been pushing through the pain for almost a decade, but as of this past January, just as I finally got a job with a company I was really passionate and excited about with huge growth potential, my body seemingly reached its limit. My folder at this job is gigantic now from all my missed work. They gave me an Occupational Health appt and that doc advises I never work more than 4 hours a day, max. Even that, I can't do all the time and I feel like a complete fucking failure.

The stress and anxiety over my job are hard to handle a lot of the time, but I am slowly getting better at recognising when I just need to call in. It used to be, I'd only call in if I wasn't able to get to the bus stop without crying. Now, I'm finally able to acknowledge that, even if I'm not in tears yet, if I try to go in when my pain is already at a 5/6 in the morning, I'm just gonna send myself into a downward spiral by the end of my shift. Whatever my pain level starts off at in the morning, it only ever gets worse as the day goes, depending on how much I try do to.

I've lost friends as I never go out anymore and cancelled all the time when I was still trying to keep plans. Now, I just don't get invited out. It sucks, but what can I do about it?

I miss the days before everything got so bad. I don't know how I was able to keep pushing through for so many years and I don't know how it got so bad so suddenly, it's like one day my body just said "fuck this" and gave up the fight. Of course, I was working 50-60 hour weeks and just forcing myself through the chronic pain and fatigue.

I can't anymore. It's just stopped my life. I'm waiting for my first lap in December, only a year after finally breaking and going to the doc so I guess that isn't too bad. I've ignored this problem for a decade and now I have to deal with the consequences.

So is life, I guess, but, man, would I love to feel "normal" again!

Lolabelle2112 profile image
Lolabelle2112 in reply to JackieBo

I would love to just feel normal again

Just fed up of it now

I’m a beautician the pain makes my job so hard but I love my job so much

I’m dosed up now so hopefully today won’t be too bad but on my days off like today I just want to be in bed I always have to cancel plans because of it

I am considering weed as I’ve heard it’s great for killing the pain I’m going to try it I’m willing to try anything x

jillybean85 profile image
jillybean85 in reply to Lolabelle2112

Hi there, I too get migraines, I'll not get one for ages tho and then I get on that lasts about 4 days. Usually around my period. There's no pattern. My doc has prescribed me sumatriptan for when my migraines start and it normally nips them in the bud.

I also take Co ccodomol but I only take it for 3 days. Have you tried neurofan plus? That is ibuprofen and Co ccodomol and found it is good for the after headaches. Aspirin is also good obvs not with the neurofan.

I also have baths alot which help my muscles and, use muscle rub on my neck and shoulders too.

I would stop the tramadol as it's a dangerous drug and can be really addictive and give you horrid symptoms when you come off them. My sis didn't have a good experience with tramadol and my sis in law is on them and she doesn't listen to me about it because she says it helps her sleep. Herbal tea like camomile and honey tea are perfect for bedtime.

Hope all this helps you and let me know if you have any questions. The chronic fatigue is a killer so lots of hugs for you xxxx

Lolabelle2112 profile image
Lolabelle2112 in reply to jillybean85

Hi jillybean85 thanks for your reply

Yeah I take baths a lot too and lie on hot water bottles on my neck which helps

I’m only taking tramadol short term for the pain after these injections it hurts so much

Chronic pain is exhausting I lead a busy life and the pain makes it so difficult

I’m a beautician so in front of a client constantly trying to put a smiley face on when I’m just exhausted is really hard

I hope you’re doing well xxx

jillybean85 profile image
jillybean85 in reply to Lolabelle2112

I know the feeling, I work with children, so when speaking to parents and other staff I feel like I am putting on a brave face all the time. The migraine is the reason for most of my absences, I hate phoning in sick, I fear having to do it. We just have to get on with it. I missed the work getting dished out because I was during recovery, because I work on supply, so I am just trying to push and get as much work as I can before my next op. I hate that I get so ill on my period tho, so I totally know how you feel too xxx

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