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Any chronic daily headaches and neck and back pain advice?

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vicki48854
vicki48854

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

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  • davidf39
    davidf39 vicki48854

    Posted

    I've started on nortriptyline instead of amitriptyline and this has definitely helped me. I am on 100mg and don't have the same issues such as grogginess etc.

    Definitely its about managing rather than cure.

    Best wishes

  • caro8642
    caro8642 vicki48854

    Posted

    Been reading your post and this thread with interest. I have suffered with bad headaches on and off for as long as I can remember. I have been on amitriptyline for a couple of years and initially I think that they helped, although only for a short while. Over the last few weeks the head ache has been getting worse and for aboiut the last 10 days, have had bad pain every day, in head and at the back of my neck as well. Saw GP last week, who said migraine and was prescribed Imigran (sumatripan 50mg) tablets which have not worked. I had a nasel spray previously, and found I had one left that I used yesterday - relief for a few hours! Felt wonderful to be pain free for a while and was able to think straight and function, which I have really been struggling with. So, have placed a repeat prescrition for more of the nasal sprays, but as they only come in a pack of 2, that could mean me going back to the GP's quite often if it works. However, reading the side effects, I am not sure I would be able to use it very often.

    Am also seeing a councellor at present, for some support and was discussingthe head aches today and saying that I feel stressed when I have them which makes them worse and unable to function, but that work is quite stressful at the moment as well, so not knowing if it is the stress at work that is making the head aches worse, or the headaches that are effecting my work and then making me feel more stressed?!!

    So off to see my friend fairly soon who is a chiropractor to see what she has to say........

  • Dontpanic34
    Dontpanic34 vicki48854

    Posted

    Hey Vicki

    I feel your pain 110% and I mean that literally! I have been only going through a similar situatuin for the last 3 months! I have been to all different specialists! I had a ct scan and a brain mri that have both been clear as well as an mri of my cervical spine that showed some indications as to why I'm having headaches but yet I'm convinved that it's not my neck and im dying from some other terrible ailment. I have been diagnosed with anxirty and have been taking 10mg of celexa which has helped somewhat but I still can't get these thought out of my head and still continue to have these strange head pains! Sometimes the pains are zaps... Sometimes burning and sometimes pressure... I would do anything to feel normal again .... 

    • Griffon49
      Griffon49 Dontpanic34

      Posted

      I have read that headaches with your symptoms can be caused by the overuse of smart phones. People are bending their heads downward to look at them and the occipital nerve at the back of the skull is getting compressed, causing your type of symptoms. It's called occipital neuralgia. If you use a smart phone or tablet a lot, you may want to lay off it for a good period of time to see if your symptoms improve. Unfortunately, the damage has been permanent for some people.
  • Dontpanic34
    Dontpanic34 vicki48854

    Posted

    Oh and just to give you a little background on me ... I am a 45 year old woman.... I am a bikini fitness competitor who worked out 5 days a week.. Since this all started I have been to the gym once and I now go to a physical therapy 2-3 days a week.
  • theboyfromxtown
    theboyfromxtown vicki48854

    Posted

    Does it help by drinking lots of fluids - fruit teas etc
    • Hollyberry
      Hollyberry theboyfromxtown

      Posted

      I think being well hydrated always helps. Headaches can be caused by dehydration.

      the most helpful thing I've used for the headaches caused by a neck problem is an ice pack. Wrapped in a tea towel or pillowcase to protect your skin, 10-15 minutes of ice. Then gentle head movements sideways, up and down and tilted to each side--I've managed to stop the headache developing like tjis and have been without painkillers for over a month now.

  • theboyfromxtown
    theboyfromxtown vicki48854

    Posted

    Vicki48854

    I was on the same medication as you but weaned myself off Naproxen and amitiptyline by taking up exercise on a daily basis.  Sadly, the headaches came back last week whilst on holiday in France (and not exercising).  Last weekend, the headaches worsened and in desperation I took one Naproxen.  The headaches then went through the roof and so did my blood pressure.  Today I went to a doctor costing 23 euros (which I can reclaim when I get back home).

    The doctor dismissed taking the Naproxen instantly and couldn't understand why I was prescribed amitriptylene for headaches.  Instead she asked me to double my blood pressure tablet (lisinopril) from 5mg to 10 mg (which she said was really a low dosage anyway) and she prescribed 150 mg Profemigr (ketoprofene).  I am only allowed to take one of these tablets per day and it must be with a meal.  I got the prescription this evening (cost of just under 4 euros) so I've not tried it yet but I'm just so happy to have an alternative viewpoint.  

  • ceelojo88
    ceelojo88 vicki48854

    Posted

    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

    Posted

    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

      Posted

      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.

  • raelyn81368
    raelyn81368 vicki48854

    Posted

    Hi. I am curious to see how you are doing vicki48854 since you posted 8 months ago. I have very similar symptoms and I am just so upset over the way I feel. Thanks
  • leah97221
    leah97221 vicki48854

    Posted

    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
    • Lala1211
      Lala1211 leah97221

      Posted

      Do u still have this? I'm on month 3 and this is surreal!

    • connie7017
      connie7017 Lala1211

      Posted

      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!

      connie7017

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