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
hannahRN2018 vicki48854
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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.
leah97221 hannahRN2018
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vicki48854 hannahRN2018
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vicki48854
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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
sophie10101010 vicki48854
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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
ai1234 sophie10101010
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sophie10101010 ai1234
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ai1234 sophie10101010
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ai1234 sophie10101010
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sophie10101010 ai1234
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Dontpanic34 sophie10101010
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amber99286 sophie10101010
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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
ai1234 vicki48854
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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!
amber99286 ai1234
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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
TheRoyalGeek vicki48854
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