Neck problems with chronic migraine

[jackiesutton62]

Hi me again. It's so good to have people who know what I'm talking about to ask questions. I sleep for 4-5 hours a night. I am woken with horrendous pain at the base of my skull and neck. It feels like a rod has been pushed into my skull up my neck. It cracks and grinds. If I try to sleep on I end up either with a migraine or unable to sleep but if I sit up or get up, exercise my neck then sometimes I can doze off again. My neurologist is adamant it's migraine causing this. I feel it's physically my neck. Does anybody have the same. Thank you

[KaylaP]

Hi, my neck usually hurts during a migraine and I often wake up with a migraine too. My neurologist said it was the neck causing the migraine though (my migraines are from viral meningitis which caused a very bad neck). I have been having acupuncture (nhs) and osteopathy (private) targeting the upper spine which seems to help.

[Pvancourt in reply to KaylaP]

kayla

can you be more specific as to what kind of accupuncture (traditional chinesse or dry needle)? Also, what does osteopathy upper spine work consist of? Ive done accupuncure, which helped because they would target the muscules then I moved and havent found another accupuncurist that would do that kind of needle work. Im not familar with osteopathy. thanks!

[Emma1024]

I have a similar problem, where my migraines (which last for a few days) aggravate my neck and upper back / shoulder on the right hand side. The muscles often stay stiff and achy after the migraine is gone. My neurologists, too, say it is caused by the migraine, rather than the other way round, and in my experience, this is probably right. Having said that, I get some relief from massage and osteopathy and stretching, so do this relatively regularly. It doesn't stop the migraines from coming, but makes the pain experience more manageable.

[Moon_Struck]

Hi Jackie - I get the same - mine occasionally come on during sleep, mainly during waking hours. Everything I've been told and read is that the migraine causes the constriction neck pain - not the other way around. I always get a small egg sized lump on the right side of my neck, base of skull. Mine got worse at meno. Wish I had some answers. If possible to do, forward and backwards shoulder roll exercises in a hot shower help a bit to relieve neck/shoulder pain. You have my sympathies. It is hard work living with migraine.

[Hidden in reply to Moon_Struck]

I get the lump thing there, like a tender spot too. I’m coming up to meno too and migraines been worse.

[Moon_Struck in reply to Hidden]

Dangermouse - the fluctuation/reduction of hormone levels at peri-menopause can make migraine worse. I found HRT helped somewhat but still had migraines. Eventually after many years, I came off HRT as my hormone levels bottomed out - migraines lessened with the consistently low level of hormones. But we're all so different in biochemistry. Acupuncture has helped and may be worth considering.

[Hidden in reply to Moon_Struck]

Thanks, that’s good to know. It’s awful. I’ve had acupuncture but couldn’t tolerate the needles hitting my nerves.

[Moon_Struck in reply to Hidden]

Yep DM migraine is a truly ghastly condition with so many 'dead days' of wasted life over many years - often I feel judged by non-migraneurs. If things get worse for you, maybe consider HRT - I used 'body identical' which was low dose estrogen patch (Estraderm) and separate progesterone (Utrogestan). What a shame you couldn't tolerate the needles. This site and the forum is good for meno information: menopausematters.co.uk Hope you find a way forward.

[Fayzi in reply to Moon_Struck]

Hiya Moon_Struck, I would love to chat to you about Perimenopause and migraines. I take Utrogestron and I have the Estrodial Gel but always scared to give it a go in case it makes it worse. I am 40 and have been going through increase migraines due to perimenopause for 3 years, and every time my periods stop I live in great pain. I pray for the day my periods stop completely. I have went 3 times where they stopped for 8 - 9 months. Reading your replies makes me think the estrogen gel may help a little. Thank you for any advice, I only use Sumatripton for my migraines everything else made me unwell. Thank you and have a good day xx

[jackiesutton62]

Thank you for your replies. It just seems an endless round of head and/or neck pain. Think I'm suffering because of very poor sleep too, due to menopause. Yes massage and chiropractor have helped lessen the severity but not taken them away as they suggested. Worth a try though. Thank you

[Pvancourt in reply to jackiesutton62]

Im going thru menopause as well...so sorry. There was a new report put out about migraines and that chiropratic care could make migriane worse. I do know that accupuncture has helped me when doing specific needling to muscles. Good luck....let me know if you find something that works for you.

[angelhope71]

Hi there, I too have awful neck pain and also around each shoulder blade. I am currently waiting to try botox although my waiting time has been 9 months now! It was suggested by my neurologist. Also recently , unknown to myself I paid for a private mri neck scan and discovered I have 2 quite bad prolapsed discs! The pain is pretty hurrendous and I very often wake up with a migraine. I too am menopausal so struggle with night sweats and rubbish sleep! I have had many years of chiropractors, osteopaths, acupuncture, physio and nothing ever seems to have a significant improvement. It has been suggested that The Bowen Technique can be good for neck pain/migraine related problems. I will try it at some point. I have been trying to attend 3 yoga classes per week for the past two years as the stretches do feel good for the rest of my body but my neck pain and in between my shoulder blades remain pretty awful most of the time.

Good luck in finding anything that can help. . .migraines are the pits.

Xx

[jackiesutton62 in reply to angelhope71]

Thanks for your reply. I had a scan about 8 or 9 years ago that showed narrowing between joints in my neck but this seems to be ignored. I've been offered botox and am considering. I've also been offered a 4th attempt at dual trigger point injections. They feel they should work as it's exactly where the pain is but haven't on the last 3 attempts. Bit at a loss really. Good to share though thanks

[sanboon1964]

hi ya im steve and ive just had another mri scan done on me and they have found it is to do with crumbling bones after suffering with the same problem as you,my results came back last saturday by post and i was horrified to read this,i now need to see my doctor to find out what can be done.steve

[babs1234 in reply to sanboon1964]

Hi Steve. Would that be the same as brittle bones? You really need to get to your GP and get this sorted. If you don't mind me asking, how old are you

[sanboon1964]

Good evening yes i am making an appointment with my gp as i am 51 and i am slightly worried as my job requires me to travel around and to do other shops like a relief manager( i am a store manager)and seeing in the newspapers in the morning they can be very heavy,i still get headaces as well.thank you babs for the reply hope to keep in touch with you.steve

[1TeiaMarie]

I too get this in my shoulders an up to the base of my skull, my dr says I have osteoarthritis in lower back and 2disk out of line at the base of the skull. Hope this helps

[NCNANCY]

I was having terrible migraines everyday/night. The neurologist kept giving me migraine meds that did not work!! Finally, I went to a Pain Management Specialist, he did an exray of my neck...I have bone spurs on my neck!! He told me to go buy a cervical neck pillow that I purchased from Walmart less than $10, told me to wear a plain neck brace around the house and a RX for Cambia. Headaches were GONE within 2-3 days..... Finally, a doctor that actually cares!!! I was also having severe pain in my lower back.... well..it was a day I was feeling pretty good and teaching my 21/2 year old grandson how to jump like a frog. By that afternoon, I was in so much pain, I was in tears..falling down, etc. Called him, he gave me a shot of Toradol that only lasted about an hour... I called him back, he scheduled me an appointment for 7am next morning. Apparently, the RHEUMATOLOGIST that I was seeing failed to tell me/didn't read the MRI from 2009....I have a bon-beneign hemogeninoma wrapped around my lower spine L-2. It was very inflammed and I was in so much PAIN. I kept telling her that my back hurt, was falling down constantly, losing my balance, etc. It makes me so angry that she just didn't care, etc. But, I would definitely have them do xrays of your neck!!! Most of these doctors just don't care...its so sad... But, I finally have found a good, caring doctor that actually listens and is not a drug-pusher!!!! Good luck!!! It's so painful.... I've had panic attacks and a migraine going on almost 2 months now!!!

[jackiesutton62]

Ah I'm sorry you're in such pain. I will push for more investigation of my neck. Thank you for your reply. Take care

[Pao_De]

my neck hurts a lot as well and headache sometimes comes from the neck to the head. l often sleep in scarf - that helps. l have noticed that during winter l get more headaches in a morninig because temperature difference between your body (under blanket) and head - differs too much. sometimes l sleep in a hat 1

[RogHunt]

Hi Jackie - yes my migraine pattern has recently become like this. A cracking noise /feeling when bending the neck that is there through the day aswell aswell as migraine . This is in the base of the neck and leading to problems with the side of the body and head [especially behind the eye ] that this occurs on . Sleep is also much inhibited - early hours waking ..

I am on Pizotifen daily though and have started to lower the dose as headaches were occurring daily even on a highish dose. I also get the egg lump thing at base of skull behind the ear. I know I should take the time out to do some relaxation/stretching exercises and have been recommended yoga techniques.

Rog

[jackiesutton62]

Hi Rog thanks for your reply. I have been recommended yoga too. Must give it a try. I do find short meditations relaxing but they don't help me sleep more than 2 hours without pain. Keep trying

[Hidden]

Hi Jackie

I suffered from chronic migraines for over ten years. Three years ago I suffered chronic wiplash resulting in neck pain which can lead to migraines so I know the difference and I can guarantee you will find great improvements with regular chiropractic care. As your user name mentions Sutton I take it you are in that area. I go to a fantastic chiropractor in Bromley who will take an x ray to check for postural problems. It is a pain free treatment and will give you great relief. The pain your are describing is horrible and presses on a nerve at base skull which in turn causes migraines. Please contact Dr. Adil at Bromley Chiropractic clinic and mention me Debra McKay. The number is 0208 466 8283 In the meantime place an ice pack in the area for 10 to 15 mins max and repeat hourly or when needed to relax the trapped nerve which is causing the pain. Also you can just place gentle pressure with index finger. Please don't worry it's curable. Good Luck

Debra

[jackiesutton62]

Hi Debra, thanks for your reply. I'll certainly look into your suggestions but unfortunately I don't live near you. Sutton is my name I actually live in Liverpool. I do find the ice gel for muscle injuries helpful on my neck and forehead.

Thanks again Jackie

[HJMac]

I often get migraines in the neck. It's just one site of the pain. Osteopaths argue that all migraine starts with neck tension. Mine are related for sure.

Often the pain just stops, like with migraine in the top of your head. If it was a hurt neck it wouldn't really go like that..

[Moon_Struck]

Hi Jackie - how are you doing? Menopause can make migraines much worse, the fluctuation and loss of hormones.

Crippling migraine (always starts in the neck, right sided pain, right eye droops) returned (from childhood) at 44 when my periods stopped. I'm on HRT - lowest dose estrogen patch and progesterone 6 weekly. It helps to control the day flushes but not the night sweats. In my case, without HRT the migraines are much much worse, I just wouldn't have any life at all.

Are you on HRT?

[jackiesutton62]

Thanks for your message. I agree the menopause does seem to have worsened the migraines. I do find any alcohol makes the flushes worse. The Doctor took me off mini HRT patches because of migraine. I can't say it made my head any worse or better but it really helped the flushes.

Since Christmas my head has been great and I wonder if it was because I was off work. However last night my neck went stiff and sore with pains down my shoulders. It feels so tight.

I do think sleeping for no more than 6-7 hours and using feather pillows has helped my neck. Not over sleeping is part of the regime the Neurologist said I should follow. However my painful neck and shoulders just seems to come and go at random.

I hope your symptoms lessen soon.

Jackie

[Pvancourt]

yes, very similar without the cracks and grinds. I sleep a few hours at a time before waking up in pain. My Neurologist says the same thing its a migraine, come back in 6-8 weeks?? I just posted something about neck pain and migraines. I finally pushed to get xrays so I could see a pain and spine specialists about injections. Apparently, I do have some issues with my neck and Im waiting to meet with the Dr. to see what my options are. Request an xray of your neck. I dont think Dr.'s always trust that we know when theres something wrong.

[Hidden]

Hi Jackie - I just wrote this note to Alison who posted about neck and shoulder pain:

I've had migraines since puberty but in the last 15 years I've had pronounced neck and shoulder pain (muscle knots - trigger points?) which always indicate a headache coming on. But - a migraine? Quite by chance I found an old (from 1988) article in the NY Times by Daniel Goleman, who talked about chronic neck and shoulder pain. This prompted me to see a physiotherapist, who (talk about good timing) had just come back from a workshop on 'cervicogenic' headaches. So she has been doing manipulation to my neck and shoulder muscles - plus IMS treatments (which I've had before but now these seem to be having some effect - so maybe she's hit exactly the right spots?). But the biggest breakthrough for me has been her explaining the difference between 'tonic' and 'phasic' neck muscles and giving me a very simple (but also difficult) exercise to strengthen the tonic muscles in my neck. I am cautiously - but very - optimistic that all this is helping. The one puzzle we can't figure out is that when I do feel that familiar 'uh oh' of a headache coming on, if I take even a quarter of a Sumatriptan pill, the headache feeling goes away. So I can't figure that out yet. Hope this is of some help. I'll find the link to the Goleman article which was a real 'aha' moment for me.

[jackiesutton62 in reply to Hidden]

Hi thank you for your message. I have been having Botox for the last year going from 20-24 migraines a month to none for 3 months at the beginning of the year. They paused the 3 monthly Botox to see how long I’d go without migraine. I stupidly had an Indian head massage which has kicked them off again. I’m going for more Botox at the end of June. My neck is awful at the moment so I’d be interested in the article if you can find it. I have been for physio in the past but it just kicked off migraine again. Perhaps I need to find a specialist in necks. Good luck with your treatment xx

[Hidden]

Very interesting that Botox has worked so well for you. I considered it a couple of years ago but felt I couldn't afford it and it's not covered by our provincial health insurance. It sounds like your neck muscles are really sensitive - and responded negatively to the massage and physio. It's all so individual isn't it? Here's the NYT article:

nytimes.com/1986/09/28/maga...

Also if you Google 'cervicogenic headaches' and 'tonic and phasic neck muscles', you'll get more information. All the best to you. xo

[jackiesutton62]

We’re lucky here in the UK, Botox is available on the National Health Service for chronic migraine. They classify it as 15 or more headaches 8 of which must be migraine a month. I’ll have a good read thank you. Good luck x

[Hidden]

I get this very often and sometimes my neck feels unstable. It’s a horrible pain.

[Avihana]

Have you had an MRI of your neck?

[Mrs-Champers]

Hello, I appreciate this thread is very old but I just came across your post and I could have written it myself! I’m in exactly the same position and some of the comments are absolutely uncanny for me. I was wondering if you ever got to the bottom of things? Currently I’m being asked to try another migraine preventative medication which I really don’t want to do because I feel it’s just a slippery slope and I’m utterly convinced it’s a physical issue with my neck/shoulders. I’m waiting for scans. Recently I changed pillows and in the physio/massage that I have we’ve been concentrating on the shoulder muscles/rhomboids/trapezius and avoided the neck completely, and I’ve seen a really positive difference. A physio managed to see an old scan report that mentioned some normal degeneration but also a bulging disc which no one mentioned, so this is aligning with a lot of what was discussed on this thread. Would love to hear any updates you (or anyone else on this thread) experienced. Thank you!

[bennevisplace in reply to Mrs-Champers]

Hi, I noticed your reply today. I joined this group a few weeks ago but have had worsening migraine symptoms for many years, now diagnosed as chronic. I have been prescribed several meds none of which worked for long, the latest being Topiramate. All have side effects.

I strongly suspect my headache stems from issues in the neck and/ or shoulders. It was a battle for me to get a MRI scan of the brain and I am sure it will be as difficult to have the neck scanned. I would be interested to hear where your investigations lead and how successful physio treatment proves to be. Personally I have more faith in that approach than in drugs.

Please feel free to send me a personal message.

Wishing you all the best.

[jackiesutton62 in reply to Mrs-Champers]

Hi I'm sorry you're suffering. After 30+ years of trying every type of medication including nerve blocks in my neck I started botox. It really is my saviour. However since Covid my treatments are not 12 weeks more like 14/15 and it comes back severely in my neck and shoulders during thus time. I'm told it's because botox is still blocking pain signals that would have reached my eye. Instead it is staying in my neck and shoulders. A coat hanger headache! It's a real thing I was always convinced it was my discs.

My Neurologist has asked me to try self injecting Ajovy. I resisted but now hink it could keep me topped up better as I would do it monthly. He said i can go back to botox. Of 400 people he has moved from botox to ajovy only a few have gone back.

Ill try but will happily go back to botox of its not right for me. Keep looking for your treatment. I found mine after 36 years. Good luck xxx