Any chronic daily headaches and neck and back pain advice?

Posted , 88 users are following.

I am a 28 year old female and I'm currently in my 20th month of chronic headaches. I am now on amitryptline, naproxen and paracetamol as I am now experiencing neck and back pain too. I never write on forums, but feel that if their is the slightest chance that anyone else is suffering like me then i'd love some words of advice or comfort. I feel that unless you deal with chronic pain, you really have no idea how hard it is to deal with and how difficult it is to speak to people about it, as nobody understands.

The pain first first came on suddenly during intercourse and it felt like I'd been hit on the back of the head- it was excruciating. I was then left with occasional headaches. After a few months, I was admitted to A and E as the dr suspected a haemorrhage as the head pain started to worsen when straining for the toilet. I was in hospital and had CT, MRI and a lumbar puncture and all sinister problems were ruled out .

Since then (19months) the head pain has increased to being constant- as in from the moment I wake till the moment I sleep, everyday. The drs have thrown the medication at me and labelled it as chronic daily headaches and their answer was always more drugs and that it is probably dietry or stress(as I am a teacher)!

I then tried everything I could to relieve the pain/find the cause. I have had lots of massage types (including deep tissue), seen the usual dentist and optician, bought a new mattress, new shoes, seen a podiatrist, bought a water pillow(great for neck ache look for mediflow on amazon) acupuncture , I have omitted all food groups from my diet (see candida diet) even reflexology!... no luck, just a poorer and more destroyed version of me.

Last week after having a nervous breakdown in the neurologists office and it seems for the first time i am being taken seriously. I think that if you're like me and you dont make a massive fuss, you dont cry lots and you just deal with it as best you can, then they will ignore you. TIP: When you see someone, explain your pain like it is your worst day, not the feeling right then and there and make a list of what you want from your appointment.

I had an urgent MRi scan of my cervical spine last week as the neurologist now wants to rule out a slipped disc. I kind of hope that it is, because at at least I will finally have answer (hopefully this week)

I don't know what I expect to come from writing here, other than for others to know that they are not alone. Constant pain is truly soul destroying. I now feel only the shadow of my former self. It's hard for others to understand and as a result you drift away from life. I am lucky to have a partner who is completely positive and supportive everyday. Surprisingly though, I have found that one of the best things for me is distraction and the 30 5-6 year olds at work are actually the best thing for me- can you believe it!

Thanks for reading. If anyone has any advice, I am all ears!

9 likes, 144 replies

144 Replies

Prev Next
  • Posted

    i am a registered nurse in training (which could mean a different qualification in the U.S.-which is where i am) but along with the things i am learning i will go ahead and share my story. i was 10 when diagnosed with chronic migraine. (i am almost 20) which let's be real, 10 years old !? needless to say, i haven't dealt with this for only a few months or few years but almost 10 years. and i can say now looking back a lot of things could've prevented my journey into migraines. my awful diet, lack of exercise, and probably my irrational stress levels were definitely some major factors. so after countless nuerologists, 1 PET scan, 2 CT scans and 2 MRIs, i am completely normal ! so im told anyways. in my first year of high school my headaches had really ceased for the first time in my life, but then came smoking, drinking, pills and everything other thing that just asking for a head breaker and a liver killer. then naturally, for the next 3 years i was constantly battling some self induced migraines. so let me stop here and say this, constant perscription (and non-perscription) pills WILL cause rebound headaches (fioricet, goodys,bupap, anything with a combo of caffiene and acetametaphine). DRINKING: well thats a no brainer, HANGOVER for days. and smoking is just a million problems in itself, but more specifically if you have tension headaches the nicotine is a muscle weakener and blood vessel constricter; which could be good depending on the headache, but we're talking about tension so thats a big NO. WATCH WHAT YOU EAT because you essentially are what you eat. im not saying count your calories and weigh your food (unless you really want) but just be mindful, only eat the fast food once a month, only go out to eat on special occasions, just buy your groceries and eat in the house. don't over load your food with butter and saturated fats and salts. just eat a little cleaner, little more water, little more alternatives (like butter, oils, sugar, etc.) with a little more concious. 

             so with that being said, i got a job at doctor's office with basically full time hours with a full time student enrollment with a boyfriend in the army. TALK ABOUT STRESS. and right after i graduated is when my headaches started shifting to one side and down my neck. yes, i tried the chiropractor. but my atlas and spine aren't going to shift and stay in place. same goes for almost every human being who was born that way. so i had the "breakdown" almost everyone seems to have with these headaches when youve reached a dead end, and my manager at the time had been experiencing the same problems so she advised i write down exactly how i feel, what has helped, what hasn't, what im willing to try and not willing to try, and just a long list of things i told her that she knew i wouldn't bring up to my nuero due to my lack of talking under pressure (back when i was pretty clueless to everything in healthcare doctor's made my anxiety shoot through the roof. odd, i know) but that actually turned out to be one of the turning points because i too, had the problem of the uncaring, impersonal doctor. (don't even get me started on that aspect of healthcare.), but anyways she broke it down for me and said i needed to probbably get checked for allergies, eyes, and ADD to see if it could be contributing. i got checked on everything. except allergies, that's enough doctors for me. my eyes had some astigmatism, which turned into a brand new pair og GLASSESand they have helped so much since i stare at a computer screen all day. ADD, only slightly, and started me on propanalol. which is probably the best preventative ive been on YET! but the real point of my story here was what she tacked onto the end of all those things i needed to do. EAT BETTER & EXCERCISE. i can't tell you how many nuerologists have told me that but i just brushed it off. i knew i had to do those things, but i wanted medicinal answers. i wanted pain pills and preventative pills and everything i shouldn't have wanted. 

    So, i got a gym membership. (a cheap one too might i add) and started a slightly better diet. i don't even work out a lot, just 4 or 5 times a week. i don't do HIT excercise or run 3 miles or life heavy weights i just do some light weights and some cardio and anything that atleast makes me break a sweat! Then i adjusted my diet; WAY more water. atleast 64 oz. of water a day (take your weight and divide it by 2, that's how i got that number. it's a good rule of thumb.) and way less fast food. when i say i was eating out EVERY day, that's no exagerration. I hardly EVER do now, and i almost always cook my food. i even tried a little less gluten which i can't really tell if that's helped or not. i take a B-12, Magnesium (which has been clinically proven to help chronic migraine sufferers) fish oil, and a multi vitamin. all these small things and i may have only 1 or 2 headaches a month. DEAD SERIOUS. the one thing i was countlessly told and finally tried WORKED. now i won't say this is anyone's magic cure but it really was mine, after almost 10 years ive found something that helps. i am on propanalol still and have some tramadol just incase i have a headache that's to deterring to work with. i know after you've reached a certain point like injections in the neck, and constant back pain, or maybe even a small pain killer addiction like me it's hard, but this is my remedy and im sticking to it. 

    • Posted

      Hi there. I just read your forum. Wow! Far out that must've been incredibly hard to deal with. 10 years!! I hear what u are saying. Eat well, (which I do except I'm a sweet tooth... choccy, bikkies, cake etc) but eat a good breakfast, lunch & tea which I make myself. Only the occasional take away meal. I don't really excercise, but I'm in hospitality so I'm on my feet, flat out all the time. My physio suggested Pilates which I might do. So, yes, excercise would be good plus I do realise that we can get headaches from the pain killers, especially if taken long term. I don't think I can go without them for even a day as the pain is so intense I can't handle it! My atlas is really sore at the moment. It stings & is so painful. Not sure why? I have a cold pack or heat pack on it constantly when I'm home (have one on right now!) I think my doctor is trying to wean me off the codeine. It's just that nothing else numbs the pain & I struggle to work & even get things done around the house. I'll need to take anti inflammatories though for the degeneration in my neck. My daughter is 12 & she was diagnosed with juvenile arthritis a couple of years ago. Mildly though thank goodness. She has started to get bad headaches daily for the past couple of months. Not sure why that is? She's not stressed or has anything wrong with her head or neck. I think our environment where we live is partly to blame as we live right next to vineyards & they spray insecticides on them etc. I've gotten worse since we moved to where we are now. Moved here 3 years ago. I'm sorry, I think I've rambled & skipped my conversation around everywhere. I hope I haven't confused u & not even made sense? I will certainly take your advise on board & try exercise, trial & elimination with my diet too. I don't know if I said it before, but my physio does acupuncture on my neck & the back of my head which helps short term. Takes the intensity out of the pain. Thanks so much for your advise & for sharing what u have & are going through smile
    • Posted

      I also have read on this website that I previously mentioned, but the moderator block me from writing about,that if you find an optimum co2, calcium and magnesium level it can have a very positive effect. Not sure how to monitor those levels without a Dr on my side and blood tests though.

  • Posted

    Thank you for all of your thoughts and well wishes. I read all. I like to think that somewhere, someone will read our comments and it will help to solve their problems. We all suffer such similar issues and yet I don't wonder that the problems might all be so slightly different (no wonder Doctors have problems). The head is so undiscovered medically.

    In response to your comments:

    On food and drink:

    I drink a lot of water, herbal teas and limit caffeine. I don't eat meat and eat a lot of fruit, vegetables and fish.

    Wheat doesn't generally agree with me so I avoid refined flours where I can. I thoroughly tested my diet and omitted all sugar, dairy, wheat and caffeine for a few months and saw no difference at all. I think an allergy test might be worth a try though. Although as my pain is constant so I wonder what it could be? I wonder if anyone else has had head pain be an allergy when the pain is chronic.

    Stress:

    As a teacher stress is part of the job and initially everyone thought that it was causing pain but it is the same in holidays (even the summer break) and no different when I do literally nothing for a week. I significantly reduced my workload (thank you work) and still no difference.

    To those single parents, I can't imagine how hard it is to find time to rest, feeling in awe of you- I'm so lucky.

    Someone mentioned a fear of dying. I too have felt that way but my doctor put my mind at rest. He said Its unlikely to be sinister because the pain is not getting progressively worse and I found that comforting. But I'm not a doctor and people should alway check these things out though just in case.

    Ceelejo88 - you mentioned breathing exercises . I have found them to be helpful (just as you've mentioned) I've been practicing mindfulness meditation and the breathing exercises have helped when practising it.

    As for the reproductive system comments, I find these interesting. I have a history of endometriosis, fibroids and polycystic ovaries (of which can I have). So I do wonder if these play a part , so it's an interesting idea and worth a thought. There trouble is always getting a doctor to support your ideas, which they rarely do.

    1raelyn81368- you asked how I'm doing. Well I'm doing quite well mentally, although the pain mostly remains. I've had Botox injections and they have helped slightly with a slight reduction in the pain but it is still daily, but more manageable. I've just had my second course of injections and am booked in for my third with the hope to downgrade the diagnosis from chronic daily migraines to episodic. This will mean that I have pain free days (fingers crossed) I am having pain free moments at the moment.

    Mental wellbeing :

    Positive thoughts and support from my partner ( now fiancé ) and family gets me through every day and remembering that this pain is just pain and it isn't who i am. I think I felt for a long time that it was changing me but it isn't. It is just consuming my thoughts. The thoughts I was having just bred more sad, lonely and painful thoughts. They breed more worry, more fear, more pain. But when we accept the pain and realise that we also have positive feelings and thoughts, life can be more fulfilling. My life is important and living my life as best I can is important. My life is a precious possession. I need to look after it and that means looking after my mental wellbeing.

    You might think this seems silly, but it has helped me more than any medication or words from any doctor.

    2leah97221- as for chopping off your head, I sympathise but don't do it please haha!! I agree, paracetamol doesn't even touch the sides.

    Disc degeneration:

    I know what you mean. I too have it and I feel like there is nothing to be done. A chiropractor told me that it is not too uncommon these days. Just try to have good posture and strengthen your body as much as you can. I worry that it'll get worse but yoga and meditation have helped considerably with my postures .

    I tried the gym for 4 months but didn't enjoy it and found the strenuous exercises tough on my head. I cycle and exercise at home when I can though. Although I think exercise has helped, it isn't my cause.

    Thanks again for thoughts and advice. I hope this helps others.

    V

  • Posted

    Hi Vicki,

     

    I only came across your story while searching google, something that I do most weeks in the hope I may find a new solution to my pain. I literally wanted to cry when I found what you had written as you may as well have written my whole life story for the past 22 months. I have always felt like the only one suffering from a constant headache. My neuroiglist always assured me I wasn’t the only one out there but I have never heard any similar story from all the hundreds of people I have spoken to over the last 22 months. It was a relief to read what everybody has been writing on this forum just to know that I am not the only one. Your story is just so similar and I think I have tried and done everything you have mentioned. I have had my first lot of botox recently but unfortunately I am feeling no benefit as yet. I take a lot of medication (amitriptyline 20, gabapentin 1200 and atenolol 20). I am only just 23 so I started suffering when I was 21 and wanted to be out having fun with my friends. Headaches have changed and ruined my whole life. I never go a day with no pain. Like yourself I am lucky that my work are understanding however I have been doing part time hours to try and help me but I am just going back in to fulltime work and the pain is unbearable. I now spend my evenings in bed feeling like I have no life. Does fulltime work make your evenings hard to manage too? I feel I have to sleep to relieve some of the pain. Are you able to drink Alcohol? I’m curious as this is something I have to avoid altogether as it causes me a migraine even worse than my normal chronic daily headaches. I feel like I have so many questions as I just can’t believe there is someone going through almost the same thing as me! I remain positive and I won’t let it all take over my life, I still believe one day they will go away forever! Thank you for sharing your story! Hope to hear back from you soon J

     

    • Posted

      Hi Sophie, I completely understand what you are going through too, I am exactly the same! It impairs everything, social life, drinking and having fun with friends, and the pain unbearable most of the time. I am working full time and sometimes I have to take time off work because i cannot do my work, let alone, sit upright! Evenings are definitely hard like you say. I cannot stay up late anymore, I have to lie down, I don't really like taking medication, but sometimes I am left with no choice. I have laid off alcohol for a year or so now, only drinking one drink about 3 times a year. I try not to drink tea either. Do you get any side effects from amitriptyline? Were you referred to a neurologist by your GP?
    • Posted

      Hi ai1234, thanks so much for coming back to me. It’s really rubbish isn’t it! It’s crazy how there is no solution to something that can affect your life the way it is with all of us. I am exactly the same, I also suffer trying to sit up straight, I sometimes wonder if its posture related because I sit at my desk all day. I hate taking medication too but I have no choice now as without it I am completely bedbound with a migraine and thinking I am going to die! It’s awful. I have been on amitriptyline since the start but I have tried other things in-between. It really helps with my sleep. It does make me tired and gave me dizziness at the beginning however I do think its beneficial and the side effects do get loads better so going up slowly is better than starting a large dose straight away. I went up to 60mg once and I was still able to function as I did it so slowly. I did get a referral from my GP, which by the way took a long time! I find like a lot of people that they just do not understand how bad it can get! My doctors are often changing too so I have to keep explaining my story to new people. I have actually seen 3 neurologists now, each of them have different things they like to try which is why I have just started botox too. No benefit yet but I still have hope! Have you tried any treatment and what things do you find helps you cope? 
    • Posted

      It really is so disabling to go through this... I sit at my desk mostly too but I also stand as part of my work and it's not better. Yesterday I had a huge migraine attack and couldn't sit up, only to go straight to bed after dinner, and I felt like I was going to die of this. Do you have that too? I do have terribly neck and shoulder/back pains too so I think that is all related. I exercise regularly though, and still does not seem to help! I don't believe I have bad posture but I do carry a heavy load on my shoulders/back which may have made it worse. But I can't not carry these things! I'm a little sceptical about amitrityline, as it's a known anti-depressant, and my experience with anti-depressants in the past have not been good! I couldn't leave my bed for 3 days because I was so drowsy. What exactly do neurologists do for you? Is it just pain medication they give you? Generally the things that help me, are sleep, regular meals and exercise, medication (Zomig or migraleve), and sometimes baths and sauna to help with circulation. Other than that not much! I still live every day with a headache whether it is mild or severe! What about you? I wonder how other people are coping?
    • Posted

      I did wonder if I would have benefited from standing but perhaps I wouldn’t then. Yes I have had quite a few migraine attacks despite being on so much medication. Mine usually last around 2 weeks, it’s total hell so I know what you mean. I do try and exercise but sometimes it can cause my headaches to be worse. What exercise do you do? It may not be right for you then, everyone reacts differently to different medication. I have tried other drugs and had that reaction where I literally have no energy that I can’t move! Generally neurologists are just there to discuss the next drugs if what your on isn’t working for you. I would suggest going to see one if you haven’t already? It seems like you have tried lots of things like me though. Most treatment I try can end up winding my symptoms up (head, neck, back) I just go around in circles and spend a fortune on everything. I have been doing a lot of deep breathing meditation which can sometimes help, less working hours, sunshine and holidays haha, I avoid trying to stress about anything, obviously no alcohol but a lot of water! Not much really, like you say it never goes away. It would be good to know if something has been helping with other people.
    • Posted

      Check your home for black mold! I had the same problems and hen I moved and I've been headache/joint/muscle/gastro pain free
    • Posted

      Hi Sophie

      I hope you still check your mail!

      I am the same age as you and have had a constant headache for nearly 2 years now, not one day without it - sounds very similar to yours as if I drink alcohol it instantly makes it worse and i have to go to bed. I also have no life anymore, and its so hard to stay positive when no-one can tell you when/if you will get better.

      I have tried so many medications, massages, chiropractor, I had steriods injected into the nerves in the back of my head with no relief - this really is hell..

      I hope you can reply back as i would love to hear if your headache has finally gone

      Amber x

  • Posted

    Hi Vicki,

    I am 27 with severe constant headache pains too. It impacts on my work, my friendships, family, social life and is debilitating. It was really comforting to know that there are others out there going through the same thing. No one around me really understands the kind of pain I go through and you are right, it is soul destroying. I have tried all kinds too like other people, sleeping right, different mattresses, pillows or no pillows, hot baths, weekly massages, visited the optician, GPs, private doctors, no caffeine, regular exercise and nothing seems to work. I have no idea what else to try. But what is most worrying is that the pain can be so bad, it feels like your head is going to explode and you fear of a brain tumour. How do you cope with the pain apart from your work with the kids? What medication is best do you think? I have to take Zomig (migraine tablet) once in a while for it to go away, as paracetamol doesn't work for me. I'm so worried about how it will affect me, you, all of us in the future..... Any responses welcome!

    • Posted

      Hello AI1234

      I was wondering how you are getting on, has your headaches improved?

      Would really love a success story as have had a constant headache for a year and 1/2 now!

      Amber

  • Posted

    Wow...it sounds like I wrote this! My headaches however started when I took an antibiotic for a bacterial infection in my vagina. That was almost two years ago and I have been suffering. I only had a head CT scan done without contrast.... my fingers and toes are always numb, I always feel uneasy, contstant headaches and head pressure, tired, etc. Apparently if you are not throwing up, there is no cause of concern. 

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.