Any chronic daily headaches and neck and back pain advice?

Brain and nerves
1

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!

2

I think you should make an appointment with a good chiropractor. Preferably one who specializes in spinal decompression.

3

Hey vikki,

I'm also 28 with severe pain..your situation is EXACTLY like mine.. Everything down to the lumbar puncture.. I was medevac out of iraq and the military doctors diagnosed me with thunderclap migraines... Along with the head neck and back pain I have severe knee pain... Unfortunately I became addicted to the medication the doctors prescribed me... So now pain medications are out of the question because I have since gone to rehab.. I have recently gone to a chiropractor who said I am in desperate need of help so I will be returning to him shortly..I have a question, have you ever been checked for Lyme disease?

4

Hi Vicki

I am in a similar situation but have been like this for over 30 years now. I am on similar meds and had some nerve blocks in my cervical spine last year to no avail. I've has an MRI of my cervical spine but not one lower down. I have sciatica and several sore spots along my spine, and wonder if it could be a disc problem. How have you got on since posting?

5

This is my first time writing in a forum as well. I am in dire need if an explanation. In March of this year I just experiencing a dulling feeling in the back of my head and in my neck..out of nowhere. It was so bad I had to fly home from vacation. I went straight to the ER where I was pumped with pain meds and told it was a tension headache and to go home and see my neurologist. 2 ER visits later still the same thing. My CT scan came back normal..Also I went to see a chiropractor no help, orthopedic received  a MRI of my spine that was normal and therapy. I am so frustrated that nothing has helped. It doesn't help to have nervous breakdowns either when the pain won't go away. On top of that a new symptom is jaw pain , went to the dentist nothing wrong..However today I am going to pick up a retainer that they say may help me if I am holding my mouth to tight in my sleep. I just don't understand why it has been 5 months and no change. My worst fear is that I have a brain tumor. I am terrified of that. My next neurological appointment is on Monday and I will be demanding a MRI of my brain...If that comes back clear which I pray it does ..I'm afraid this is something I will have to live with everyday for the rest of my life. 

6

Hello everyone, I have also suffered from daily headaches and this is my second year. I have done tests whether it was ct or mri scans, everything looked normal they said. I am still looking for a solution, i surely do not want to live my life like this. I wanted to ask what other symptoms do you suffer? For example I have pressure feeling behind my eyes nose and face, band like headache, sore spots on my scalp, neck and back pain. No medication have helped reduce this pain. However , i have recently read about doctors using endomethacin to solve certain types of daily chronic headaches called Hemicrania continua, do read about it. Unfortunately this medication didn't work for me but i hope it might work for some of you. If you could please answer my question and i hope you keep me updated. Good luck to all of us smile

7

   Hello I am 26 and I'm having the same problem except the back problem... its the back of my neck thst hurts...during my headaches I have hypertension(blood pressure become a lil elevated) but I believe I have hypertension bc of the painful head ached.. I was healthy few months ago working out living normal now I'm miserable everyday....my headaches is trigger but perfum, light,sound, any smoking around me, or anger...

      I'm going Thur the doctors and every pill I've been giving isn't working... so yesterday a lady told me to elevate my legs w a pillow.  Now my legs hv never swell hell I'm only 26... today in months my head stop hurting.... woke up for the first time w no headache although I feel like if I over work my self or turn my head to quick there is a chance my headache will come back..but I'm on my way to sleep now and I feel my head ache coming back because im writing this on my phone with the lights out... i feel like its something to do w circulation in my head.  I pray its not a tumor... I'm n the process of getting my head checked...

8

Hi,

I just wanted to let you know that my situation is very similar to yours; headaches for over two years, no medication works....well I've started 80mg of propranolol and that's working a bit! I'm so happy not being miserable ALL the time! Anyway if you ever need support, I'm here

9

Just to ech what I said above-I've been going through the same for 2/3 years, so any help or support

10

Sorry that message sent too early!

I was saying--any advise or support I can give I'm here.

11

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. 

12

 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.

13

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

14

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

15

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.

16

You actually need MRI of your entire back.   I live in the USA and our insurance requires a scripts.  One for each of the three areas of the back.

Never the less, you problems may be from the mid or even the low back.  Pain moves and radiates, so the Full MRI series may get you some real answers.  I was told I had Fibermialgia before the MRI.  Now that the Doctors have the true info, they can's just blow it off as no big deal..  

Hope this helps

17

Fiber Mialgia can case very similar pain issues.   If you reseach it, it shows several area of the neck and back that are the culprite.

I use to think FibereMilagia was a BS made up thing when Docs didn't have an answer.   I now kbow, it's real and very painful

Give the research on this a go.

Feel better

18

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....

19

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

20

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