Severe Headaches getting Me Down

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I have suffered headaches for many years, ranging from mild tension/sinus type headaches to severe debiltating can't do anything headaches which exhaust me. My "bad" headaches have become increasingly worse over the last year to the point where I am either on sick leave or using holiday leave & now at the point of final formal warning. I enjoy my job as an RMHN but i'm struggling at the moment. Various GP's/hospital doctors/alternative therapists have diagnosed me with different things so as to try all the known treatments. Sprays for "sinusitis", migraleve/imigran etc.. for "migraines", neuroleptics for "tri-menial neuralgia", various analgesics for "cluster headaches", a bespoke mouth guard for "Temporomandibular joint disorder", various diets for "allergies", chiropractic for "neck problems", citalopram for the depression associated with so much pain which may be "psychosomatic" or "stress". I won't go into the various alternative therapies, which have helped, but only short term unless you can afford time & money daily. I am currently taking dihydrocodeine (double dose as now tolerant), oxycontin & Longtec, which is oxycontin slow release, & still on the citalopram. I know all this medication is adding to the problem & causes re-bound headaches, however, when I attempt to reduce, the pain is worse than ever & requires even more medication. I am stuck in this horrendous cycle & feel no-one can help. I have had one MRI scan 3yrs ago which showed "flairs" but was inconsequental. I have "plodded on" with help via analgesia for so long it is losing it's efficacy. On return to my GP i was restarted on the various meds tried in the past with little success again & have booked a private consultation at £200 which has been already been cancelled/changed on 4 occasions. If there are any new treatments that others have had with some success, PLEASE let me know......

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5 Replies

  • Posted


    I suffer terrible headaches also & nothing works at all to get rid of them and i also lost my job so i totally understand what you are going through.

    What have you tried to help them?

    I have also tried a number of meds & had the brain scan.

    Butterfly x


  • Posted

    Hi caroline sounds bad; I am on amitryptiline 30 mg as a headache preventer and not so long ago thought I would need to up that, as the headaches started hitting on me again and the fatigue was really bad.  Today I am on 30mg amitryptiline and found anadin with caffeine good if I could catch that moment when you know the headache is going to happen...its worked really well for me..

    I heard backstroke swimming is really good for tension headaches and helps with posture....I have been swimming regularly for 18 mths now and try to keep with it ....infact I see it as a priority and the reason for this is that early morning/late morning/early afternoon when that tiredness/fatigue hits or even just goes straight to the headache....i have discovered I can break the cycle of fatigue and it seems the headaches as well.  I was bad and see it as a miracle cure...though I am not ofcourse ..... I dont have late nights, try to get plenty of sleep, if tired go straight to bed as soon as possible.  I am a support worker in the community so work split shifts, which helps me manage my condition.  I think swimming is the key for me and I feel my posture is so much better.  In Dec/Jan/Feb 2014 had physio and went back to work feeling good.....I cried with pain it was so bad; we are now in July and I am swimming about 4x a week and feel great, I have heard walking also helps so I am planning to include this.  I drive everywhere.I tend to believe I manage my condition....its always there but at the moment I feel I have good control  and I feel amazing and headache/fatigue free...My tablets travel every where with me (anadin with caffeine for headaches) ..I have sneeked an extra amitryptiline when there was breakthrough pain and it worked.  i take the amitryptiline at night, for me 3 hours before I want to go to bed, as for me it wakes me up.  there is information on the net just put in amitryptiline and headaches if this asn't been offered you. 

    Also Lynn Robinson Body Control The Pilates Way, she had tension headaches for well as tension in the jaw, clenching down...i have tried pilates and it is amazing.  I am rethinking my day... I want to get up at 5.00am 1 hour pilates, swim at lunch and somewhere in the week fit in some walking where I can...but ...its worth it, its worth it not to be in pain or fatigued....literally losing days,if not weeks to this condition.  My philosophy is I manage it and my prospects of being without pain today seem really good.  I can only hope this helps ..for the fatigue I do try now to eat iron rich foods or I am happy to supplement with vitamins or syrup etc......At the moment I am restricting my working hours to part-time and concentrating on improving my health, until i feel confident that I can work a full day.  Hope this can be of help to you.. my heart goes out to you regards karen xx

  • Posted

    Hiya, rereading your entry i had also considered the candida diet....a symptom of which is fatigue.  I thought it can cause this is another option..  For me to break that fatigue, before its onset, because once it comes I find the only thing to do is go to bed, or I'd get a i would recommend a walk, I am not suggesting a hike but a small walk, maybe ....I wonder if swimming, walking just gets the blood flowing ...I dont know but its exciting to think ..but these actions swinging the arms, swimming, pilates help to loosen trapped nerves which in my case is where the head hinges on bottom of the neck, in between shoulders and I dont know quite why but also combat fatigue .Hope some of this may help, even the end of last year I was in despair but now I feel more in control ..I am not really out of trouble but for me things are looking a whole lot better and I feel I still have options I havent tried but could, even should.  Hope this can help you to find a way through, rethink when something worked for you and then didnt,  this is me really it works, lapses , I try again more resolute to stick with a routine that i have a fair measure of success with.. Karen x
  • Posted

    Hi Karen here, just thinking and its gone 9.00 pm and I am getting tired.  I think I find I get ready to rest my neck/head on a pillow to ease the stress on the neck shoulders.  Somewhere on the net there are pillows for tension headaches, if you can imagine a polo mint but less round.  I am seriously thinking about getting one of these, as sometimes at night I just cant seem to get the pillow in a postion that suits my needs, to offer my head support without my head being raised too high. I think my head and neck need to be aligned and these special pillows look really suitable for this purpose.  Last thing my dad had sinus headaches and they were bad, in the end I believe they drilled some bone in his nose to relieve pressure, which ended with loads of padding up the nose and was really painful.  \he said if he knew how painful the operation was he wouldnt ve had it but his headaches went ... Food for thought perhaps regards Karen x 
  • Posted

    hello carolanne, i hope you are still following this thread.

    i have suffered from terrible cluster/migraine headaches on and off for at least 20 years, but in the past 5 or 6 they became daily then multiple.

    nhs doctors have done more harm than good. they never even diagnosed cluster headaches. first gave me 2 courses of antibiotics to treat an infectious rinitus that wasn't there. then they started putting me on ever increasing doses of anti -histamines and cortico-steroids(these drugs are poisons, the more of them you take the less likely that your body will be able to heal it's self).

    i was finally led to a book called "the plot against asthma and allergy sufferers" by felix ravicovich md. there is a whole chapter on headaches in it as he puts our problem in a big group of dysfunctions that all revolve around a little but very important cell that is found throughout our bodies. the mast cell. the mast cell's main function is to produce and store a substance called histamine.

    cluster headaches used to be called histamine cephalgia or horntons disease. 

    anyway the upshot is that our mast cells are not functioning properly, the part of the cell that makes the histamine is working great but the other parts, the ones that tell the cell to stop, are not.(what antihistamines do is block off the receptor that makes the histamine, the H1 receptor, effectively trying to kill off the cell entirely).

    sorry, i'm rambling but i just get so angry when doctors say "nobody knows what causes migraines/clusters"

    unfortunately i do not have a copy of the book i mentioned above(loaned out to a needy friend) so don't quote me on any of this but, this dr. hornton who was first to study histamine cephalgia and for whom they named the disease, was treating people quite successfully for the headaches with a substance called histaglobulin.

    histaglobulin is a synthetic form of histamine which was first sythesised in the 1920's!

    the idea is vaguely homeopathic but the doses are rather stronger than what homeopaths do. hornton suggested that subcutaneous injections of histaglobulin diluted to 10 to the -6(that is 1/1,000,000)would be therapeutic to the mast cell and get the H2-3 receptors working again.

    i have been injecting myself daily now with 0.1ml of histaglobulin at about that dilution for 6 months now and have not had 1 serious headache during this period.

    i can't say that i'm cured. i still have to watch what i eat(but i have put on over 10 kg!). and as i get emboldened, i stray and have reactions, but they are much less intense, the "halo" comes and goes without the blinding redhot poker ever rearing it's ugly head.

    any allergologist or immunologist will stock histaglobulin as it is the substance that they use as a control when they do the skin prick testing.

    i went to a place called the burghwood clinic as it was the only one that i called who said that they used histamine in their shots.  they do a thing called intradermal provocation instead of skin pricking to find what level one's body neutralises a number of allergens and histamine. then a "vaccine" is made up of these.  there were to be 2 sessions for all the tests and after the first i asked if they would just make me up a "vaccine" of the histamine and nothing else.

    it is definately working for me.  i am not cured but, my god, those headaches...not so bad anymore..

    i am trying to refine my dose strength, first i went a bit stronger and things got a little worse, now am diluting it a bit more and maybe on the right path. i think the dose may be very specific to the individual.

    but something else that i really want to say carolanne is that you are on a

    very dangerous cocktail of drugs, those are real head****ers. they must be stopping you up some too, which will build up histamine in your gut which will in turn cause the release of histamine from your mast cells which will cause more headaches.

    i hope you can do something with this information.

    "nature heals, but histamine cures"

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