Coat hanger migraine

[babs1234]

I have just got back from my neurologist appointment and was told I have "coat hanger migraines" the pains across the shoulders up the neck and into the head are typical for this type of migraine. I have been told to stop drinking tea, coffee and fizzy drinks completely and stop all painkillers, he said after 6 weeks I should no longer need painkillers. I'm to go back for a scan next month as a precaution He also told me that caffeine counter reacts to painkillers. He said that they will get worse before they get better so here goes. No more cuppas for me and I will keep you updated

[Paulacg]

That's a new one on me - but describes it well. Also sounds like he thinks you may have medication overuse headaches - which is amazimgly easy to do as its normal to take something when your in pain and you end up getting a headache when it wears off. Good luck - hang on in there.

[LouG]

No coffee no tea and no sugar has made an enormous difference to me. Never heard it called coat hanger before but it makes sense. I also need physio to improve posture and less stress but diet changes have been crucial. Hope it helps you too. My doctor also recommended eating every 3 hours- smaller healthy regular food, keeps everything steadier!

[Franniep51]

I know your pain, esp the coat hanger migraines.

Even though some doctors say caffeine causes migraines, I have been prescribed Fioreset, which contains caffeine, for my severe migraines. I only take it when other pain killers do not work and the pain is so bad that I cannot stand it and it is daytime. Fioreset is addictive Can't take it in late afternoon or night because the caffeine keeps me awake. What a contradiction.

[babs1234]

Omg! That's mad. He told me that painkillers counter react to caffeine . Makes me wonder does anyone rally know

[doughnut72]

Good luck

[Frodo]

Never heard of this type of migraine. I've heard before that caffeine makes painkillers work better/more strongly?? There is an OTC painkiller which is paracetamol, aspirin and caffeine. Although it made me really ill so I wouldn't recommend it. And according to news reports, paracetamol, which was thought to be a safe painkiller, isn't. Not that it works on migraine anyhow.

[babs1234 in reply to Frodo]

No paracetamol didn't touch mine. I was told no caffeine whatsoever nor decaf coffee or tea. In agony atm but was told it would get worse before it got better.

[Frodo]

I find ice is the only thing that makes a difference if the pain won't go (applied to neck), I use those packs intended for cool bags wrapped in a damp teatowel. Drink plenty of water if you can little and often. Seems v. harsh to leave you with nothing. I take as few meds as possible as they don't suit me, but sometimes have to resort to migraleve which helps a bit. Usually Docs recommend triptans (tried & they didn't work for me). You can also get medication overuse with them though, if you take them too often. A GP told me to try vit B2, in general B vits can help, also magnesium. I also take bromelain which is a digestive enzyme but apparently has mild analgesic and anti inflammatory properties. *not medical advice just sharing experience*

[babs1234 in reply to Frodo]

Thanks for your reply Frodo.. I had to laugh though as I take a hot water bottle to bed put it under the mattress cover (can't use a pillow) and put my head and neck on that. You use an ice pack? I will try it, as I will try anything. I was on Amitryptilyne for nearly a year as a peventative but they made me completely loony. I'm dying for a fix of my imigraine as I know I will have a pain free day but it will be back tomorrow so I'm not giving in

[Frodo in reply to babs1234]

Haha! Well, we're all different, so ice may not work for you. Worth a try perhaps. I mainly apply it to my neck, but also temples, forehead, jaw as the pain often moves around ... just googled ice/heat for migraine out of curiosity, found a recommendation by a naturopath to apply ice compress to back of neck, at the same time putting feet in a bucket of hot water ... best of both?!

[sammyp]

hey there, i have the same problem, mine stems from the shoulder, i can tell when im about to get it as my shoulder starts hurting from the back n goes all the way to my eye. i dont believe the caffeine and tea thing as caffeine is used in medications to help constrict blood vessels, the only thing that works for me is a dose of panadeine extra and ibuprofen as soon as the pain starts, and heat, i dont use ice as that seems to hurt. i really hate this type of migraine as it lasts for 3 days minimum for me . i had a cortisone shot in the back of the head that helped

[babs1234]

I was suffering badly the other day and went for a shoulder neck and head massage and the pain just went. I was fine the next day but today it's back. I'm going to see if there is such a thing on the NHS. But I won't hold my breath. I'm going back today for another session well just see if it has the same effect

[LindaPhoenix]

Hi Babs, how are you doing with your caffeine detox? I've just found your original post on here & it's interesting as I've developed really painful shoulders and neck over the last 2-3 weeks. I used to get typical hormonal migraines, lots of vomiting and pain around ovulation & period, but now I've got these awful pains around my neck. The pain even radiates down towards my wrists and I've got a painful nerve spot on the back of my head. I just wondered if stopping tea, coffee & fizzy drinks is helping you?

[babs1234 in reply to LindaPhoenix]

Hi Linda I wouldn't say they have stopped completely but I do think they are better than they were. It's still early days and I was told I would get worse before I got better. He said to go back after 6 weeks so I'm giving it that before I know whether it worth doing. I have just had a shoulder neck and head massage and that certainly helped. Im going to ask if there is any way I can get something like that on the NHS as im sick of trying different drugs. I will keep you updated but I would say give it a try. I know of someone who gave up just tea and they haven't looked back. Hope you feel better soon. X

[Tpez]

Are you still on this site? I've just been told exactly the same by my neurologist. In week one and in a lot of pain. How did it work out for you? X

[babs1234 in reply to Tpez]

All I can say it does get better but absolutely hell for a couple of weeks. Was still getting migrains almost daily though the shoulders aren't as bad. Just neck and head, left side. However I have just had a Daith piercing and that has helped a lot. Only had it 3 weeks ago so still really days but so far so good

[Tpez in reply to babs1234]

Thanks for your response. Does it mAtter which ear you get the daith piercing?

[babs1234 in reply to Tpez]

They say the side get the pain. If it central you can get both done but I would leave it a month in between. My pain was more across the shoulders up the neck and left side of my head normally.

[Tpez in reply to babs1234]

I get it all over really, as well as neck and shoulders. Have you had Botox? Thanks x

[babs1234 in reply to Tpez]

No about the only thing I haven't tried. Had the daily preventative amitriptilyne, that worked for about 6 months and of course the trusty old Triptans but was taking too many, that's when the neurologist told me to come off all meds, no tea, coffee, alcohol, fizzy drinks. Thought I was having a stroke at times the pain was that bad. Then I tried accupunture, that did make them less frequent and less intense.. Never gone so long without pain since having the piercing. I'm still not holding my breath because so many times I think I've cracked it then BANG were back to normal. I don't want to give anyone false hopes and was told by the piercer it works for SOME people. Just praying I'm one of the lucky ones.

[Tpez in reply to babs1234]

Oh I really hope so for you... How amazing would it be to be pain free!! X

[babs1234 in reply to Tpez]

Thanks.. I will keep you updated and you think about giving a try. Plenty of stuff on google about it.. Hope you're feeling better soon x

[Tpez in reply to babs1234]

Thanks, I'll give this caffeine free thing 6 weeks first then I know I've tried it one way or another ... X

[babs1234 in reply to Tpez]

I really feel for you because that first couple of weeks is horrendous but persevere it will get less intense. Good luck

[Tpez in reply to babs1234]

Aw thanks, I want to sleep the next few weeks away.. X

[babs1234 in reply to Tpez]

Hi tpez. How was your night? I though I'd give a few tips on what helped me as my nights were always the worst. I found when it was bad I slept sat up on 5 pillows with a scarf round my neck and twisted it so it supported my head. I found that putting the hot hair dryer on my neck helped but too frozen wet flannels to bed in a cooler bag for my head. I also found no pillow if lying down. ( I still don't use a pillow) I went physio who told me because I was holding myself hunched up I was beginning to get frozen shoulder so they gave me exercises to do. Moving your head, neck and shoulders is very important . Don't do what I did which was not move as much as possible.. Keep the muscles and joints moving. I slept in the spare room for weeks so as not to disturb my partner....( sitting up in bed with a scarf round my neck and a flannel on my head, in between hot air drying my neck isn't the best to sleep next to. Lol.) anyway I'm not a doctor but just thought I would tell you what helped me when I was going through the dreaded detox thing

Xx

[Di-a-monds]

Hi, I've just joined. I've suffered from very frequent severe migraines for 5 years, I get shoulder, neck and back pain, due to me hunching my shoulders during attacks. I've been caffeine free for almost 5 years too, although this doesn't help prevent the migraine, it is definitely better for me. I have tried all meds, nothing helped. I have Botox every 3 months, although I still have them my recovery time is quicker. I have been told it's affecting my posture and my weight has increased, the only pain relief I take is migramax powders, helps the neck pain, I also use heat pad. I'm very interested in the daith piercing, please let me know if any good results