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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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  • Dontpanic34
    Dontpanic34 vicki48854

    Posted

    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 mites...at 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

      Posted

      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

      Posted

      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

      Posted

      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

    • Dontpanic34
      Dontpanic34 vicki48854

      Posted

      I also developed acne on my face and upper back which in all my 35 years have never been a problem!

      Did you have any of these symptoms?

    • vicki48854
      vicki48854 Dontpanic34

      Posted

      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

    Posted

    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

      Posted

      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!

    • helenaelise
      helenaelise dkr31906

      Posted

      I live in Washington where weed is.legal. and so far that is the only thing that helps all day!
  • Hollyberry
    Hollyberry vicki48854

    Posted

    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

    Posted

    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

    Posted

    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

    Posted

    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
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