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vicki48854 vicki48854

Any chronic daily headaches and neck and back pain advice?

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!

140 Replies

  • ceelojo88 ceelojo88 vicki48854

    Hi vicki. My n ame is Courtney and i also have suffered with constant headache/ migraine/ sinus pressure/congestion throbbing what have you what ever you want to call it name it title it...After reading your blog and you mentioned during intercourse it got me to think... which if truly you suffer with these headaches then you know that to actually process a thought... well it takes a lot of will power and concentration. My point is I also have noticed that either/or during intercourse or usually masterbation sometimes that would trigger some mild throbbing but mainly if i begin to shed a tear (which doesnt happen too often) and especially if i dont get enough fresh air i am one too who suffers everyday. For two weeks it will be on my right side then the left side for the following weeks to come. in previous years ive always had them on the right side especially. Recently they've shifted back and forth. My grandpa is a chiropractor and i was raised in belief of a natural healing process which takes time. Yes regualr chiropractic checkups would benefit you tremediously well. Although some adjustments could intensify your throbbing of the temples/stiffness of the neck but keep relaxed and pay attnetion to your breathing excercies. Taking a deep breath till your chin is level gaple of your brain then slowly exhale out your mouth breathing deep within your stomach literally feeling your belly botton touch your spine. be sure your shoulders and hips are relaxed cuz any tension could cause more damage and/or pain.  now that ive rambled on for so long i'd like to throw my opinoin out there in case anybody at all would like to address cuz this is someting ive come to conclude and no i have never been diagsnosed with anything...but i believe a rupture of some sort or how would i say... um...kinda like a clog or jammed perhaps would describe better but i believe a member of the female reporductive system whether it be an ovary, fall. tube, our uterus, something up in there that is in association with our sacral nerve which is what induces an orgasm somehow gets logged inbetween somewhere causing inflammation and deformation when it tries to respond back to its normal position. Then causing scar tissue which is also very painful but with this pressure applied to certain nerves mayb it causes a growth in our heads. I literally can feel a growth or something that is in my throat. could be mucus, or plaque growth possibly but I used to be prescribed xanax for my panic attacks. Those seemed to be the only relief and still are the only relief when i ihave access to them of course. I am no longer prescribed but boy do they help calm my nerves and for a day or so i will go without having feelinjg like i bounce my head off every step i stomp .  thank you for writing cuz now i know im not the only one who goes through similar situations. thankyou


  • rae089 rae089 vicki48854

    I have this same problem. I'm 17 and I've been having the same chronic headaches, back, and neck pain for at least 3 years now. The pain is excruciating and slowly becoming unbearable. I got in a car crash a few months ago and the headaches became chronic migraines. My parents and doctors don't understand/believe the pain. I'm not one to complain about it constantly and I tend to downplay my pain and act like it's no big deal. However, even when I stress the importance and intensity of my pain, no one listens. No one suggests anything or even attempts to help me. I don't know what to do. I don't think I can deal with this severe of pain for forever.

    • vicki48854 vicki48854 rae089

      I'm so sorry to hear about your accident and your pain. I think unless you go through invisible illnesses and pain like this people cannot understand very easily.

      Kick and scream at the doctors until they listen to you- you need to be heard.

      I understand downplaying your pain, I do the same, but this is a debilitating condition. Think about how often you're tired, how often you can't complete tasks you'd like to or go out and see friends. That is the impact on your life! Good luck

      Stay positive.

  • leah97221 leah97221 vicki48854

    Hi there. I have had chronic headaches for approx 4 years now. They first began with the occasional one (very acute though) then began to increase & last a few days, go away for a couple of days, come back, & now I have had a constant headache for over 2 years. It's there 24 hours a day. In the beginning I went to the doctor who sent me to a specialist, had a CT scan, found nothing untoward so put it down to being tension headaches. I had a mouth guard made up at the dentist to wear while I'm sleeping because apparently I grind my teeth at night. It didn't do much to help the headaches. I do suffer from sinus & apparently that can make your neck, face & head hurt. About a year ago, my neck really started hurting too & of course contributing to my head pain. So, daily I suffer from chronic neck pain & headaches which are unbearableness say the least! It has affected my mental state. I'm short tempered sometimes, don't feel like doing anything except to crawl under my bed & stay there if I can't chop my head off from my lower neck! The doctor put me on panadeine forte tablets which do help as paracetamol doesn't help with the pain but the codeine does. I have been taking them for nearly 2years now so they aren't as affective cos my body has gotten used to them. Unless I have something to numb the pain, I can't function at all! I have been a single parent for 8 years now, so I guess I can get a little tense at times due to the stresses of working & balancing home life & doing everything for my children. About 6 months ago my doctor also put me on Lyrica which is for nerve pain. It does nothing for my head & neck, it just stopped a pain I started getting down my arm. I also take Endep which is for moods & helps sleep & pain. It does help me to sleep that's all. I have been going to a Chiro for a few years which helps short term & recently started going to the Physio which also helps short term. I was hoping that if the stress in my life subsided & my sinus clears up, I might start to be relieved & headache & pain free or at least a little free. It has been going on too long so I don't think that'll be the case. A recent MRI showed slight degeneration in my neck so neck pain will only get worse over the years as that progresses I guess?! I am just screaming out on the inside & can't handle this headache pain much longer! When I saw my doctor the other week, he said to try these other tabs called Targin. They have oxycodone which should help being in the opioid family (which are the only things that help my pain) & it has naloxone which helps constipation as opioids can constipated. Well, these tabs don't help at all & my doctor halved the other pain killers I was on but won't let me have the full dose & is making me stay taking these crappy ones that do nothing. I am going insane with this pain & really struggle to cope with it day in day out. Yesterday, I googled headache & neck pain & came across this forum & read your message. I can't believe there are other people with pain like mine! Feel so sorry for you & can totally relate! People around me just don't understand & make me feel like I'm putting it on or something. Even my doctor I think. I'd like him to experience it for just 1 day & see how he goes! I don't know if you have tried a codeine based pain killer but if not, give it a try. It helps my pain each day. Wish I could find something better or even find what exactly is causing it so it can be treated & the pain disappear as it seems unreal that tension & sinus can cause such horrific pain? I think it's great to read what other people say as its comforting that someone understands & also someone might say what they do for pain & it could help another! You also said that when working with the children it helps you. I agree. When I'm working, it does help to focus on other things, & it's a distraction really. Want to let you know, I understand & feel for you with what you are going through smile

    • connie7017 connie7017 Lala1211

      Hi, Lala. There is a light at the end of the tunnel. I had severe headaches, neck pain, back pain, sometimes my upper arms. I tried massages and physical therapy. I had two MRI's. They found nothing. Then I was sent to a neurologist, bless him.  He put me on steroids for a few days. Then he prescribed Nortriptyline and Sumatriptan. The First did very little, but the Sumatriptan may have saved my life! I was like you...ready to try anything after eight months of constant pain. I'd shut myself in a dark room with ice packs. Feels good, but doesn't make the pain go away. 

      Now after four pleasant months, I've felt it coming back about 4-5 times. I take one pill --  Sumatriptan - which is prescribed in boxes or bottles with just 9 tablets.  I didn't believe they would work. The first night I got up to gp to the bathroom. I woke my husband and told him I'd grown two inches, lost ten pounds, and had no pain!! Unless you've experienced this, you really don't understand!

      if you haven't seen a neurologist, find one! A few days of steroids made me feel better, and I'd take the Nortriptaline if I thought I needed it, but the Sumatriptan is my miracle pill! I take one when it feels like my pain is returning (bad headache affecting my eyes, noises hurt,...) I take ONE pill and I'm good! You can take it twice a day, but I only did that in the beginning because I thought they were my instructions. One pill! It's a miracle!

      best advice if you haven't done it: go to a neurologist!!!

      ill be praying for you! And I'd love to hear what worked for you!

      With kids at home, I don't know how you're managing. Take one day at a time. Benedryl (50 mg) might help at bedtime in the interim. Get the cheap stuff with the same active ingredient. It's over the counter and sold under many names. Pharmacies all have their own brand.

      here's to you!! Feel better fast!


  • hannahRN2018 hannahRN2018 vicki48854

    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. 

    • leah97221 leah97221 hannahRN2018

      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

    • vicki48854 vicki48854 hannahRN2018

      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.

  • vicki48854 vicki48854

    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.


    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.


  • sophie10101010 sophie10101010 vicki48854

    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


    • ai1234 ai1234 sophie10101010

      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?

    • sophie10101010 sophie10101010 ai1234

      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? 

    • ai1234 ai1234 sophie10101010

      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?

    • sophie10101010 sophie10101010 ai1234

      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.

    • amber99286 amber99286 sophie10101010

      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

  • ai1234 ai1234 vicki48854

    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!

  • TheRoyalGeek TheRoyalGeek vicki48854 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. 

  • Dontpanic34 Dontpanic34 vicki48854

    I replied to this forum a few months back... I was having the same symptoms! I as well went to a number of specialists... They ended up putting me on celexa which im no longer on!! Anyway my last stop was an allergist.. Found out I had a mold allergy as well as dust the time I didn't make the connection!

    I moved out of my apartment and miraculously iVe been feeling better since I moved! Chronic headaches, body aches bone pain ... POOF GONE!!

    There was mold in the apartment and that's why he doctirs couldn't diagnose me .. They weren't looking for mold!!

    • vicki48854 vicki48854 Dontpanic34

      I find this very interesting as I have mould in my flat too.

      I'm making am an appointment with an allergist as soon as possible. Thank you for getting back to the forum. Hopefully someone will find it helpful.

    • Dontpanic34 Dontpanic34 vicki48854

      If you have a mold allergy it will cause you to have all those symptoms ... Whereas someone else may not be allergic to it could be around it and nothing will happen!

      Please keep me updated ... I was dying slowly... If I didn't move out of my apartment I probably wouldn't be here today!! I've been headache free since February 1st... And so far I've been feeling great again... I'm back in the gym and am even doing a fitness competition next month!

      I really hope this is what's been making you feel I'll... But you must get out of there because it can kill yoi

    • Dontpanic34 Dontpanic34 vicki48854

      Joint pain (knees,ankles, neck, back) joint swelling in neck, spine .. They saw stenosis on mri and DDD ... Extreme headaches... You would change.. Sometimes it was a pressure/squeezing... Sometimes it was a throbbing as though something was gonna explode in my temple... Eye pain.. Weird jaw pain... Pins and needles in my face and all over body... Air hunger ... Would feel as though I couldn't get a breathe of air .. Like shallow breathing ... Gastro problems... Drs did colonoscopy couldn't find anything but had all the symptoms of IBS ... I wasn't able to eat certain foods anymore without having bad gastro issues such as avocado... I even had an epidural injection in my neck along with pt that's how bad I was ... My son was coughing for months and no prescription would help him.. They have him prednisone and albuterol and he still kept coughing

      These symptoms weren't all at the same time but pretty much what was going on between September and february ... They toldnme it was anxirty because they didn't know but once I moved out all the symptoms slowly but surely disappeared and now I'm feeling like the old me again.. And then i weaned myself off the 10mg celexa

      That' was such a BAd time in my life and I woulsmt wish that on my own enemy

    • vicki48854 vicki48854 Dontpanic34

      I have joint pain in my knees, ankles, hips, back and neck but have suffered with pains in my legs for years due to my hyper mobility. The neck and back pain is new since the headache began and I'm never sure what came first. I never know whether they are unrelated or one makes the other worse.

      I'm not sure about stenosis but I too have disc degeneration in my cervical spine which apparently isn't too uncommon. My cerebellum (hind brain) has descended into my spinal Collum but only by 4mm and apparently isn't chiari malformation.

      I have extreme and constant headaches/migraines (according to the diagnosis) which rarely let up. I have phono and photophobia, worsening with movement/bending and straining. I have eye ball ache. I get the pressure sometimes it's like my head is filled up. I get throbbing from time to time. I sometimes get short stabbing pains that wake me up or strange pulling or stretching pains on my head.

      As for air hunger it's weird you mention it because sometimes I find myself breathing funnily, my partner comments on it. I've thought that it's linked to the headache though (read about POTS if someone else interested). It's worse breathing when I bend down and I'm not overweight or unhealthy ( although I've gained more weight since this started).

      I get tingling a lot but I'm pretty sure it's a medication side effect. I also get a strange ache in my arms and a twitch in my thumb from time to time (all of which I've told Drs).

      I have a lump in my large intestine which I had an ultrasound for a few years ago that was just a slow moving part of my bowel. I have mild ibs and recently the Dr discovered I had an internal hermorroid, so all pretty routine really. I don't digest wheat very well so I avoid I generally.

      I also have terrible skin.

      My head did get a little better recently and it did coincidence with a bit of a clean up of the mould issue at home. But I also had my first round of Botox. Ive had my second round recently which isn't proving as successful and the mould is starting to show its ugly face again so you never know?

      Can't be too hopefully and if it is this then it could be serious as you suggest. An appointment with an allergist is worth a shot.

      I don't know if you're in the UK or not but did you have to specify that you wanted mould tested for?

      Above all things I'm so happy for you that you've finally found out what's wrong and sorted it out. Congratulations and thank you for sharing x

  • helenaelise helenaelise vicki48854

    Hello, I am 19 and also have this problem except I have had this problem since I was 15... You are right everyone thinks I'm faking my pain and no one understands... I wake up every day with a headache sometimes a migraine. Doctors also threw medicine at me and I stopped taking all medicine including over the counter. I found that yoga helps because it stretches the muscles. And deep tissue massages help. Except I have 2-hour long deep tissue massages and am so sore afterwards.... Except these are all temporary fixes.. I am still looking for a permanent fix. Chiropractors have always made my back and neck pain worse...

    • dkr31906 dkr31906 helenaelise

      Hey, I'm also 19 and have been having these pains for about 2 years now. It's been mostly every day but I think it somehow gets worse with stress. I'm currently sitting for exams and the migraines and back pains are here from the minute I wake up right up to when I go to sleep. I also carry a heavy bag everyday which proabably doesn't help but I don't have a choice. I've resorted to constantly taking neurofens which isn't good but I have to get through the exams somehow.

      I've been to the doctors and tried so many different things. I've had blood tests and even an MRI but there seems to be nothing wrong..

      Like you, massages seem to help for a little while, and I've been told to start yoga or Pilates but I haven't had a chance to do that yet.

      everyone thinks I'm exaggerating when I say I've got a headache. Sometimes it gets so bad I can't even walk up the stairs.

      If you happen to try anything that works please let me know smile good luck!

  • Hollyberry Hollyberry vicki48854

    Please, everyone, be careful taking all forms if ibuprofen. My daughter has damaged get stomach as she has used far too many for her chronic headaches. GP says it's likely she wasn't careful enough to take them with food ( not easy when you've a splitting migraine and feel nauseous) 


  • Helba Helba vicki48854

    I'm really moved reading all of these posts and it's comforting to know there are fellow sufferers out there.  My story ......well I believe I have several triggers, menopause, tension, neck.  To cut a long story short I've tried every kind of medication for migraine (even the doctor is at the end of the road).  What works for me?  Life saver are the triptans.  Zolmitriptan 2.5 mg. I take a half when I start feeling migrainey, Sometimes it will prevent it from escalating, sometimes not. If it does develop into a full blown attack then I take sumatriptan injections (only allowed 2 in 24 hour period). That helps with the unbearable pain and can bring it down a notch. Docs say should only take 2 zolmitriptans a week but you do what you have to do to get through the day don't you. More than 4 a week though and I get medication overuse migraine so need to keep a diary.  For the neck I use ice packs a few times a day... it's temporary relief but anything is better than nothing.  Currently trying to find a physiotherapist who practises the "Watson technique". An australian guy who's developed a technique for cervigenic headaches (neck related). Evidence sounds positive so that's my next step.  And depression... yes it's pretty bad isn't it. Affects the whole family and dealing with the guilt of being constantly poorly, frustrated because you can't do what you could do and anger ... the why me question all leads to depression. Acceptance is a way of dealing with it, although I do have days where I still feel sorry for myself and how unfair is life !  Mindful medication is also something I'm trying so you've just got to keep going havent you, because the alternative is somewhere you don't want to go.  Hope some of this info is useful to someone out there

  • Hollyberry Hollyberry vicki48854

    In the last 6 months I've bought one box of paracetamol, and used just 1/4 of the box. No other Medes at all.

    the chiropractor treated me for about 6 weeks and showed me exercises to do. I've not had to go back to her. Only other thing I did was buy a flat pillow ---I sleep with just this one. Fall asleep on an extra pillow and I wake with slight headache and neck ache. 

    I know I'd still get migraines if I ate chocolate, drank alcohol or coffee and so on but the really awful far worse than migraine pain that I had was from my neck. 6 doctors failed to spot it and just fobbed me off with tablets. My GP spent longer showing me the practices website than he did examining me. 

  • eric1911 eric1911 vicki48854

    Hi Vicki. I know your pain. I suffer from migranes and cluster headachs all the time. I have had my body collapse and pass out from the pain. They ran me through every type of medicene. Anyways a doctor finally found my med i needed. Its called NUCYNTA he saved me from blowing my brains out i was real close cause i could not take it anymore. Most everybody on here would be cured. No doctors ever want to perscribe it because it comes from opiods so it is a narcotic. You will not ever find anything that works this is it. I promise. It took a foregin doc to tell me most docs do not even know about it

  • popsws popsws vicki48854

    Hi Vicki,

    I know you've had so many responses but I'm so glad I'm not the only one suffering from this problem.

    I'm 22 and have been experiencing these headaches for 10 months, had an MRI scan, massages, been to the chiro, acupuncture/pressure, I'm on a low dose of amitrip (my doctor wants to up my dose). I think this is completely masking the situation however.

    My family and friends are understanding but it still doesn't feel enough that they don't knwo exactly what you're going through. I have a great social network but somehow I feel so alone with this 'illness'.

    The severity of the headaches fluctuate but are consistent that they are every single day and painkillers don't even scrape the surface.

    Do you think it's psychological? The doctors seem to direct their concerns that way; the chiro is convinced its physical as I have a lot of tension in the back of my neck, weak back muscles and my spine is bending slightly the wrong way.. how do we know who to believe?!

    I'm a very strong person, for my age too I think I'm pretty realistic and mature about these things but if this goes on, I'm really struggling to remain sane and emotionally stable, I cry everytime I go to the doctors which isn't like me. I'm a very busy person working in a bar and the rest of the time working on my music and playing gigs, I literally cannot afford to have this continue if I want to enrich my life as best as I can.

    Anyway, thankyou for sharing, please let me know how you get on with your treatements and vice versa with me. The chiropractor is currently what I'm undertaking although no improvement so far..

    Do you think alcohol could be a factor too? I have a healthy diet, always have and have always kept fit.. I'm interested to know your take on the possible causes!

    Thanks, hope you're well and it isn't getting you down too much. Gotta stay strong and push on!



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