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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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  • sarah65472
    sarah65472 vicki48854

    Posted

    I am 26 and have been having this kind of pain for 5-6 months. Pictures have a lot of other health problems, but this chronic daily headache doesn't seem to be related. I have tried lots of different preventative medications, but had lots of bad side effects from them. The pain is driving me absolutely insane. I can't even be nice to my family anymore. 
    • TruthFinder
      TruthFinder sarah65472

      Posted

      Hi:

      I fully understand.  I've been maried for 43 years and my wife is feed up with me.  The chronic steady pain makes me nasty and short tempered.

      I hate myself for it but have suffered for so long I no longer have the time of day for my family and friends.  It's a vicsous circle....

    • katie061212
      katie061212 sarah65472

      Posted

      I feel the same as what you listed. Did you ever find any relief??
    • shane13272
      shane13272 katie061212

      Posted

      Hi i have no good news as yet but i am going to try the herbal medicine route It seems to have worked for a lot of people .This pain has almost ruined my marriage and has already ruined my social life.Going to work everyday is an unbearable challenge.You can try warn compression Where the pain is but as for those stabbing jolts ilean against the wall and put pressure on the side that hurt and take Long slow breaths.It just helps bear The pain
    • heidi_16057
      heidi_16057 shane13272

      Posted

      Hi, I started getting my headaches after a sledding accident. After all the trying of shots I had C4 - C6 fused and since leaving the hospital this headache (10 times worse than a migraine) won't go away. I've tried more shots as mine stems from the top of my spine along with about 20 different meds and nothing really works. I have spinal cord damage so dizzy all the time and slurred speech, balance issues (fall quite often) I don't feel hot or cold anywhere on my body either. I'm from the U. S. and have even to many neurologists without any answers. I was wondering if you found some herbal meds that work for you? I would much rather be on herbs than all the other meds with there side effects. Any information you can provide would be greatly appreciated.

      Thank you

  • Quatorina
    Quatorina vicki48854

    Posted

     Hi (im not from uk) I only made an account here to share what i do when headache occurs. Im 25 Ive been experiencing headache i think 4 years now though mine might not be as severe as yours, still it bothers me at times. I think the pain is caused by tension or compression (its important to pay attention to what causes the pain you'll know it cause you feel it). The location of the pain Im feeling is at the back of my head sometimes down to my spine and the back of my eyes (you'll feel that too). I dont want to drink medicine as long as i can endure it because i dont want my body to be independent in it specially pain relievers that can only give you temporary comfort but doesn't really give you the cure you need. I tried to go to doctors but they only gave me prescriptions and when i came back to tell them the headache is still there they are just going to give you another set of prescriptions (im not saying all of the doctors are the same). So what i did was to think of a way to stop the tension or compression that was causing the pain. I thought stress is one common cause of tension (if you search for illnesses nowadays stress is always one of the causes). I tried to lie in bed in the most comfortable way ( you can sit as well but the key point is you have to be in a relaxing position). I closed my eyes (lightly it is relaxing not closing your eyes from things you dont want to see) and finally I cleared my mind. (Avoid thinking of anything not even your dog or food etc. Just blank let there be nothingness) you would feel that your nerves/ muscle will start to relax ( like an angry fist that slowly opens). It will set you free from compression. Stay like that for as long as you want just try to rest your nerves from the pain ad tension. We now live in a stressful environment sometimes not even doctors can tell what we suffer from. Those tests where normal but you dont feel fine. At times its better to just shut your eyes even for a few minutes and stay away from the stressful, pressuring world And come back a little bit relaxed. You'll know whats happening to you after all you can understand yourself more than anyone.
  • Hollyberry
    Hollyberry vicki48854

    Posted

    Hi Vicki, Hodcyouve been through the mill.

    our symptoms have some similarities and strangely distraction has helped at times to lessen mine.

    I'm assuming blood tests were done and nothing showed?

    Your blood pressure was checked too ?

    Pain often causes us to breathe more shallowly and I wonder if this causes headaches. Maybe being more relaxed during something distracting we breathe more naturally ?

    if all else has failed I'd try a chiropractor.mimnseeing one week after next as I'm now sure the ne knowing is part of the head pain.

    and yes, my HP just wanted to chuck tablets at me too. 

    It's also worth looking at every little thing you eat. I've found a migraine on one occasion was caused by me eating a 1/4 inch piece of pineapple.

    a piece of dried ginger gave heart palpitations and a migraine that lasted 2 days. 

    What dose of amitrypltilene are you taking?n

  • Hollyberry
    Hollyberry vicki48854

    Posted

    Excuse typos please. Not sure why my typing has gone to pot tonight.
  • TruthFinder
    TruthFinder vicki48854

    Posted

    Hi Vicki:

    Im a 61 year old male, retired from 25 years as a Police Officer in the USA.

    Anyhow, I've had some injuries over the course of my time as a Policeman, however, I was able to get back up and shake it off....  Of course, I was a young guy at the time.

    Anyhow, over the past 5-6 years I've been suffering with severe back and moreover neck pain with nasty headaches.  Over the past year I begain to suffer to the point where I unable to lay down to sleep as this makes it much worse.  I have been through just about every pillow being sold and also bought a Tempurpedic matress....  Nothing helps at all and things have continued to go down hill.  Anyhow, the Doctors took me serious a few months ago, sending me to the Hospital where they hgave me an MRI.  Finally !   They found 3 heriated discs, arthritis and numerous other issues in my back and neck.  

    With this being said, even the stong narc meds don't touch the pain.  I've gone for Physical rehab several times for a month each, Accupuncture, Chiro, and also Antiinflamitory shots into the areas of my neck and back under anastigia.   This was the only this that gave me some relief, but very short lived.  I've gone a few times, but not allowed to get anymore for a year.

    So, here I am.  Only able to sleep maybe two hours a night sitting in a chair. 

    I too at am my witts end as there is no fix for me problems. 

    Hope my problem shed a bit of light for you.

    If anyone has a next step for me, "No, not to jump off a highrise"  LOL,

    Please drop me a note.

    God Bless all who suffer.

  • vicki48854
    vicki48854

    Posted

    I have been reading the responses to my post and they have been filling me with comfort. It has been difficult for me to respond these last few months. Nothing has changed for me with my pain other than I now am officially 'depressed'. I just wanted to write a little about depression first for anyone suffering and then I’ll get to where I’m at with the head.

    Depression

    Prior to the start of the headache I considered myself to be a positive person (I still try to be) so admitting how low I have gotten has been difficult. It hardest in these situations to tell those who you love the most that you are feeling depressed when you can see them going out of there way to do everything to help you and your ‘invisible illness’. But I have and they are still here.

    I would like to offer advice to anyone out there in a similar situation- talk to your family, talk to your friends, talk to work, talk to your dr. Not all my friends (and family) have been as supportive as i’d expected, which was sad, but others have surprised me. You are not alone, even if you think that you are.

    I want to keep on working, as distractions are helping me and if I don’t work I worry what will become of me. I have been very honest with my bosses and am very blessed to have a strong support network at work and we’ve worked together to reduce my hours and load.

    I referred myself to a counselor through my GP and it was the best decision I have made so far. I had the standard 12 week sessions (anyone is entitled to) and then pushed my GP and the counselor’s boss to add another 8 sessions on (it wasn’t easy) and I am still have counseling now. I have finally spoke to my GP and he suggested that depression, which is a common symptom of chronic pain, can amplify your pain (so uped my antidepressant)- I guess that when you’re at your lowest it all becomes very all consuming.

     

    Headache

    So this is where I’m at-

    I had the MRI of my neck and it showed slight disc dehydration in my cervical spine. But otherwise nothing.

    The Dr then put me on Pregabalin (anti-epilepsy drug) to treat the ‘chronic daily headaches’ which had no effect (meanwhile I was still on 50mg amitriptyline).

    I then saw a specialist. I asked my GP to recommend a neurologist who specialises in headaches. The new Dr thought I was potentially suffering from low pressure headaches caused by a CSF (cerebrospinal fluid) leak caused by a leak in my dural sac. This could have been from a sudden movement of the head (e.g. a sneeze) or from the LP. As someone who is hypermobile  I might be more susceptible to this. He tested this by giving me high amounts of caffeine (not sure why). But it made it a lot worse, so it was a low pressure headache, so now we are back to square one.

    I now have a chronic daily migraine diagnosis and  am on 75mg amitriptyline for depression (not the best antidepressant but I was already on it and it would take a while to come off one drug and start another) and 25mg Topiramate (topamax) twice a day for the head- no difference. I will up the dose next week and so on and we’ll see- I’ll let you know if it helps.

    I saw a phenomenal cranial-osteopath who helped a lot with my back/neck and he directed me to a website. Its taken me months to fully understand the information on this site but I think this might connect my dots. I am going to try whatever the Dr’s suggest but this new research offers explanations the extra symptoms that people can not explain (other than the normal migraine symptoms, photophobia, nausea….) such as:

    -      Worse on car/tube/train

    -      Whoosing sound/screeching in ears especially at night

    -      Tinnitus

    -      Worse when excerising/ valsalva

    -      Descended cerebellum (hind brain drops into spinal column)

    -      Facial flushing

    -      irregular heart rate/loud pulse

    -      headache worse for moving/standing/up and down stairs

    -      hormonal imbalance/irregular cycles

    and many more.

    Sorry for the long post, hopefully it will be helpful for those who need help from it.

    P.s

    I have recently started looking into mindfulness and meditation - you should look into it too. I had a moment in mediation last week where I had about 10 pain free minutes- golden!

    Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

    http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • ryan59709
      ryan59709 vicki48854

      Posted

      Hi Vicki,

      Thankyou for sharing your experiences on here.

      My partner is suffering from what seems like a very similar (if not the same) thing. She's a primary school teacher (31 9/10yr olds in the class) in an under budgeted school - probably a cause of a lot of the stress she feels.

      Reading through all the posts, there really seems like a common theme with the prescription drugs being prescribed, with no real relief. Amitriptyline, topirimate etc.

      It's also good to read through you're journey to where you are now as it helps to work out where next to turn when the support from GPs feels like it's lessening.

      Has the situation improved for you over the previous 5 months since your last post? Would you mind posting about any new things you have tried or any new information you have received that may help?

      Thank you, and stay strong and positive. I can't help but stay positive and think there is a solution here somewhere, I just need to find it.

    • Griffon49
      Griffon49 vicki48854

      Posted

      I have been suffering from chronic daily headaches for 31 years since a skiing accident when I landed on the right side of my neck and base of my skull. I have had two cervical surgeries at C6-7 and C3-4. I also suffer from occipital neuralgia which causes my head pain. It is like having brain freezes all over my skull that come and go. I am on Topamax 100mg twice a day, Tramadol, Hydrocodone/APAP, and Duloxetine 90mg for neuropathic pain & depression. The meds have helped a lot and I seldom have brain freezes now, but I still have constant dull pain. I have been unsuccessful at getting any doctor to do a brain MRI with contrast to see if there is scar tissue wrapped around my occipital nerve at the base of my skull the way it was wrapped around my radial nerve and artery at C6-7. I think the nerve is somehow compressed and I know there are surgeons who are doing occipital nerve decompression surgery, but not in my area and my neurosurgeon refused to even discuss it with me. Laser therapy has given me some relief. It reduces inflammation, speeds healing, and reduces pain. The only contraindication is a previous cancer diagnosis of any kind. I also have a prescription compounded pain cream that I can apply to my neck and head that reduces the pain for a couple hours three times a day. I have an appointment with a new anesthesiologist this next week to see about injecting trigger points. I'm hoping for some relief. Constant pain ruins lives. The weight of my head on my neck and spine (another long story) causes me a lot of discomfort and I spend most of my life reclined in a chair or flat in bed to keep the pain to a minimum. I rarely leave the house and my husband's and my social life has suffered. I had to quit working in our business and at home and that makes a person feel worthless. I would much rather have a sore knee that would quit hurting when you take weight off it than a constant headache that you have to try to ignore when you need to be pleasant, think, talk, etc. At least you don't have pain when you sleep. I dream a lot and there is usually pain in my dreams somewhere. The dull pain never goes away for me.
    • Mitzbitz
      Mitzbitz vicki48854

      Posted

      Hi There, could you tell me what the cranial osteopath diagnosed you with, so I can have a look at it? 

      I have a lot of similar symptoms as you and think it could help me as

       well.

      thank you.

    • mikayla94926
      mikayla94926 vicki48854

      Posted

      Hi Vicki, Could you please private message me the website that your cranial-osteopath gave you ? 
    • connie7017
      connie7017 vicki48854

      Posted

      Didn't they discuss a Chiari Malformation with your cerebellum dropped like that? That could explain everything! I was actually hoping  could have brain surgery, but the surgeon said I didn't have the CF.  I was bummed.

      as for the depressions, anyone who is in pain eventually becomes depressed. That's natural and normal.its an admission that you don't have control over your body. I'm cheering and praying for you, Vicki. When you make it through this, we'll know that the rest of us can! We're counting on you! Just keep taking one day at a time, trying new things, being open to new treatments, and don't feel that you have to apologize for anything. You're stronger than most of the people I know!

    • margsk
      margsk vicki48854

      Posted

      Hi Vicki,

      I hope you're doing better now. But if not, you should revisit the csf leak as causing your issues. They are quite hard to image (Ct myelogram, DSM), and then it's quite honestly the experience and "eye" of the radiologist reading the results. The fact that you are hyper mobile is a definite red flag, as are your disc issues. Also the valsalva making you worse. Also, csf leaks and head pain lose their positional aspect over time. There's an excellent explanation on YouTube, by Dr Ian Carroll from Stanford. I don't think I'm allowed to post it, but definitely worth a watch if you're still suffering. Good luck, and feel free to message me if you want more info.

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