Help with constant severe headaches?

Hi all,my fm has gradually got worse since over a year ago and just recently Iam having such severe headaches almost every day and its making life so hard on top of all the other pains and symptoms.At its worst its a really severe constant intense throbbing over my entire head,scalp,jaw,neck and its like someone is squeezing my head.It affects my eyes as I find it hard to keep them open and I cannot stand light,noise,have difficulties talking,concentrating,reading and typing or writing.Does anyone else have these and if so is it just part of fibro?I don't understand why Iam getting them all the time now.Someone said to me that feverfew was good for migraines so Ive ordered some and Iam waiting for them to come.Has anyone got any suggestions?x

24 Replies

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  • Headaches often accompany fibro, but you need to see you GP as soon as possible, to make sure there is no other underlying cause for this.

    Constant severe headaches can indicate all sorts of illness - some serious - so you really do need to have this investigated.

    Moffy x

  • After seeing your GP and getting other things ruled out like moffy suggests.... If they are caused by your fibro .. I used to get migraines every 3 days out of 7 due to neck and my shoulder muscles going into spasm you can have injections for migraines at your local pain clinic if your gp will refer you.....mine were caused by my neck and shoulder muscles so I have those injected every 3 months...and the migraines have stopped ...but the woman in the next bed to me once was having them in her head for severe migraines

    VG x

  • Thanks moffy and VG,Iam going to see my doctor tomorrow so will let you know how I get on x

  • Like the wise Moffy and VG suggest, best to get things checked for certain. That having been said, I totally understand what you have said about your symptoms, all of which I have experienced in migraines. Over the years I have had many different medications, but am currently on a drug called Maxalt (rizatriptan) which you just pop a tablet into your mouth, don't swallow, but let it enter the blood stream through the blood vessels in your mouth (apparently one of the quickest ways to absorb medications). Like you, when In migraine mode, I have highly increased sensitivity to almost all stimuli, smell, light, heat, everything is heightened. Once I even had the embarrassment of losing control of my bladder, this too my dr assured me, was not confined solely to me. I hope you speak soon with your GP and manage to get some help with the nasty things you are experiencing,

    Foggy x

  • Many thanks,Iam seeing my g.p tomorrow so I will ask her about a med for my migraines.Will let you know how I get on x

  • I have TMJ syndrome which is linked to fibro. I started with it a few years ago at the same time as fibro symptoms began. The TMJ was diagnosed first, the fibro much later. It is a jaw problem which causes head, neck and eye pain. My jaw clicks too. This might not be the same problem as you but could be worth looking into. I actually got refered by my dentist for this as my GP ignored my complaints. As with fibro TMJ can be worse with lack of sleep.

    Hope you get this sorted out.

  • Hi there,it does sound similar to what I have so I will ask g.p tomorrow,thanks x

  • I am sensitive to noise light and smells, I also suffer from headaches,not migrains tho, I really cant stand noise light or smells especially after shave or perfume smells Ive bee told its all down to fibro,it soujnds plausable because fibri affects our nerve endings as well as tendons ligaments and muscles ...Dee xx

  • hi, ive fibro along with a host of other things, some apparently fibro related, started getting bad heads, tremors and drinking more etc. after friends told me it could be diabetis i asked doc for tests, said i was clear at last test so no need for more, stuck him out about feeling worse, weight gain is really bad as well, told him i was fed up with everything being put under the fibro umbrella and i knew something was wrong, after some blood tests its come back i have under active thyroid :-( something else to add to the never ending list of ailments and drugs, worth asking for this simple blood test, but understanding it is another matter !!! xx

  • Hi there,I will mention that to my g.p,I have put on a bit of weight since fm but have put that down to anti-depressant and pregabalin x

  • Hi Haribo. Headaches has been the worst sympton of fibro for me. I have had constant daily every day for the past 2 years resulting ina migraine about once every 10 days. I was originally diagnosed with chronis daily headache before i got my fibro diagnosis. I have struggled getting any kind of help on the NHS so i have been paying for cosmetic botox for the past year however i became immune to it. I work full time and the only that gets me through my day is the 4head roll on. People dont tend to think it would help much but believe me it does. I get all kinds of headaches all over my head neck shoulders face and jaw so i also use 4head up the muscles at the back of my neck. Be careful in taking OTC's meds too often as you can rebound from them which is why 4head is great. My doctor also prescribes me sumatriptan which is an absolute god send. When i get a very bad migarine that little tablet stops it usually within 2 hours and preferably after an hours sleep if i can get it. Depending on what other medication your on and once you've confirmed with your GP its nothing to worry about then i would highly recommend you ask for Sumatriptan. But again it cancause rebounds so i limit myself to just once week. So after 2 years of these headaches i then get a diagnosis of B12 and Folic deficiency cause by Aneamia. THIS also causes headaches. So.....for the past 6 weeks i have been getting treatment for that and i have also been taking magnesium supplements and B2 Riboflavin supplements and this Haribo is the best week i have had in 2 years headache wise. The fibro is flooring me still but headaches i seem to have some progress. And i think its either my supplements im taking OR its the treatment of my deficiency. B12 deficiency is very common in fibro sufferers apprently. Also a must must must for me is avoid all foods containing nitrites such as anything cured or smoked, bacon, hotdogs etc etc. Hope this helps i really do as being stuck in a headache mode for me is far worse than dealing with fibro. Good luck.....you are in my thoughts x

  • Hi there,funny enough I use that 4head as will but Ive never put it on my neck only my forehead and I get through so much of it.So I will try putting it on my neck as well.Iam going to see my g.p tomorrow so will mention that med you recommend and ask for a blood test to see if Iam deficient in b12.Was this a normal blood test you had done via your g.p?x

  • Sorry forgot to ask about the Botox,how does it help??x

  • I specifically asked him to test me for the deficiencies as i am one of these who will spend hours and hours researching my symptons to try and get some relief my doctors are not providing. He was reluctant to test me but after my insistence i actually came back more than b12 deficient!!! Botox has recently been approved by the FDSA for the treatment of migraines howvere not all NHS areas have it readily available as yet which is why i have been paying private. Botox basically numbs the muscles and nerves. For it to work properly for migarine it requires many injections all over the head including the neck and shoulders and scalp....and that is botox for migraine treatment. However the cosmetic botox surgeons will of course only treat you cosmetically in the forehead. I have found 2 people who have administered it in my neck, one of them was in spain while on holiday and worked a treat but i obviously couldnt go back to him. The second one clearly didnt know what he was doing and left me pain for 4 weeks in the neck region. So recently i have just stuck to botox in the forehead but as i say i think i becoming immune to it. I do believe the supplements of B2 and magnesium have helped me massively but like with everything i never know whats working and whats not working. Its either my treatment for b12, my supplements or some new muscle relaxants im trying. I dont know but i have had headache relief for the 1st time in 2 years since Saturday.....im off to egypt on staurday also so i hope it lasts. So yes ask your GP about availability in your area of botox for migraine treatment, ask him about sumatriptan as trust me that is an absolute god send and also try magnesium and b2 supplements. Definately worth getting chkd out for the b12 also........do let me know how you get on as i am recently new to this forum and to find someone who is suffering with headaches as much as me really helps to know i am also not alone. xxxxxxx

  • I know it sounds silly, but my neighbour gave me a headscratcher, it has about 20 little prongs and you put in on top of your head and move it up and down - I could either do it myself or my husband could do it. It really helped pain and I wore it on my head for several months, I looked a bit like an alien but it really worked in keeping the headache under control. I also had a trigger point injection into my forehead by a dentist who specialised in facepain, he is in Bristol but trained in USA face pain hospital, and I could hardly believe it, this dreadful headache that I had had for months just went immediately, like magic.

    Hope you get better soon, love and hugs x

  • Hi there,thanks for your reply.With regards to the head scratcher,is it like metal prongs that curve round?Do you know if the trigger point injection can be done at a pain management clinic?x

  • Yes my pain management clinic is divided into two parts .. OT and pain management courses in one half and the other deals with the injections

    Vg x

  • Hi milky,many thanks for your reply.I would like to get checked to see if I have any nutritianal deficiencies,can my g.p arrange this or do I have to pay someone to get it done myself?Iam very much interested in trying out supplements,herbal remedies,and looking at what Iam eating to see if they can help with fm.Ive started taking a supplement that has magnesium in it,I will get a b12 supplement as well.I will ask my g.p about the things you have mentioned,Iam pleased that you are having some relief from the migraines and hope it lasts throughout your holiday.Hope you have a great time,will let you know how I get on at docs.How are your other fm symptoms as well?x

  • For those who might be reluctant to take more medication you could try the Bowen technique. It's lovely and gentle to receive, and is very effective for relaxing muscles and relieving headaches and jaw pain.

  • Hi cat53,can you explain a bit more about this and how do I access it?x

  • The Bowen Technique is a very gentle hands on holistic therapy. It is characterised by breaks in between movements. I have personal experience of how it's helped me. I went for treatment due to a frozen shoulder. Cleared it in 4 sessions. It's stopped my hay fever. I no longer need to use my asthma medicine and it makes me feel good. My daughter finds it very effective for her Clicky hips, back pain, hay fever and headaches, my grandchildren benefit as it clears up their EXZEMA. Works on my sons bad neck and gives him pain relief and it stops my husbands stump spasms and nerve pain in his hand. So all in all I think it's brilliant. However the symptoms come back if you don't keep topped up. So treatment maybe 3-4 times a year once you are at your optimum.

    Re accessing treatment, generally it's private only. So to find a therapist you could google in your local area or look at ECBS website or BTPA both have registers of qualified therapists. However, if you are lucky enough to live in the Durham area you can get a referral via the pain clinic to The Northern Integrated Health Practice (NIHP) and receive treatment for free.

    PM if you need further information. :))

  • Thanks for your very helpful info,think I will give it a go x

  • Definitely see the doctor.

    Personally, I did find that the chronic headaches and intractable migraines I had were linked to Myofascial Pain syndrome and treating this with muscle relaxants and (private) myofascial release therapy (MFR) was effective. If I start getting headachey now, I get some MFR and they go.

  • Can you please explain what myofascial pain syndrome is please?x

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