New here and looking for support

Hello everyone, my name is Helen and as you guessed from the title I'm looking for some guidance and support from chronic pain sufferers and hoping I have come to the right place.

This is the first forum I have joined to talk about my pain so please bear with me.

I was first diagnosed with Cervicogenic headaches at 19 by my Osteopath but had been suffering with them since I was 13 (brought on by the stress of exams). I'm now 28 so this has been going on for quite a while. Initially I went through all the painkillers and have now developed an immunity to most of them so I'm now taking prescription Naproxen and occasionally amatryptaline (reluctantly - I hate the stuff) but I'm now starting to develop an immunity to the naproxen.

The NHS have been pretty rubbish, it took having a headache for 5 days and a very emotional trip to the doctors to just get prescription medication and for them to take me seriously and when I took it further and ask for a referral I got sent to pain management for CBT despite many many attempts to self manage with yoga, meditation, exercise, diet, alternative therapies etc.

My pain always starts in the occipital region and travels around to my jaw, behind my eyes and in my temples. Sometimes it's both sides, sometimes just one and I can always trace the nerve path in my head because the whole thing throbs. Migraines used to be once a year but have increased and make me quite ill. I have constant neck pain and that translates into a headache anywhere from one headache a week (very rare) to several headaches a week. Some just last from a day to seven days. The one I am experiencing at present has been hanging around since yesterday afternoon. I experience neck and shoulder stiffness, limited range of movement and light sensitivity. New symptoms over the last few months have been nausea and shaking with each headache.

I'm now looking to go private for a full medical diagnosis and solution because I got married last Saturday and my husband (still feels odd!) and I would like to start a family soon.....unfortunately naproxen during pregnancy is a huge no no so I am really focused on finding a solution or long term plan now before potentially having a 9 month headache.

I have suffered with depression previously and at times have wanted to end it all on particularly bad days with headaches. My quality of life has been reduced, today we were going to take our two dogs to the seaside for the first time and instead I'm at home in a dark room waiting for naproxen to hopefully kick in. With each headache I find myself asking why me and fight off getting upset because it will only make my headache worse and potentially shift it in to a migraine.

My husband Rhys is very supportive and gives me neck and shoulder massages a lot but when I have a headache any pressure on the knot in my neck makes me feel really sick.

I would love to know if anyone else is suffering in a similar way and what treatments you may have tried. I got a hands down refusal to a nerve block and MRI when asking so I'm hoping going private will give some better results.

Sorry for such a long introductory post, felt good to get it out though!

Love and light,

Helen xxxx

Hey,

No I have not, I have requested referrals to the hospital for a full medical diagnosis (as Ostepaths are not on the NHS) as well as X-rays and MRI's but been denied every time. The NHS do not believe in Cervicogenic headaches which seems to be why I have met with so much resistance, and that's seeing several GP's. I have been seeing my osteopath for several years for torn ligaments in lower back around sacrilliac joint as well as neck and shoulders. Hoping going private and paying for it myself will help me get an MRI and X-ray to check any damage in my cervical spine or if it's just my hyper mobility causing this xxx

Hello Susie,

Thank you for your response. The only difference I have with a full migrane is increased sensitivity, sound makes it worse and extreme nausea or vomiting. The rest of the time I have just considered them to be my usual headaches. Have you ever managed to find out the reason behind yours? I have been told mine are due to a lack of muscle tone in my neck caused by hyper mobility which is genetic in the females in our family but nobody else gets the headaches. Sorry to hear your kids suffer with them also, they are so debilitating, sounds like they have a wonderful supportive mum who Understands.

The amatryptaline I use about an hour before I go to sleep and it knocks me out fully for around 10 hours and when I wake it feels like I have lead tied to all my limbs for a few hours, which just makes me feel a bit uncomfortable. They did just triple my dosage though so it might be a case of getting used to it.

I have just managed to shift my current one with 1000mg naproxen, a hot bath followed by some relaxation music and a nap. Such a shame I can't take time out at work to do that when I get one!

Shall keep pushing the NHS and in the meantime I'm waiting for a call back from the headache clinic about my options for going private. I shall check out the migrane forum soon and see if there's anything I have not tried

Xxxxx

Post Edited (Helen) : 6/4/2015 8:47:51 AM (GMT-6)

I have migraines both with and without aura and I know you don't consider your's migraine but my symptoms are very similar to yours with the shoulder and neck pain and tension. In my case I am fortunate in that I do not have them as often as you have them. I do have one right now and it does seem to be partly my neck and shoulder. I can only imagine how it would feel to have this headache as many days as you do.

I am fortunate in that for the most part the migraine medication Imitrex works well for me especially if I take it at first sign of headache. You really do describe some of the symptoms of migraine. It may be a silly question but have you tried the migraine meds. like Imitrex? I truly sympathize as I have had this one go away and then come back for three days-unusual for me. I take the nasal version of Imitrex. Susie had a good idea about popping into the migraine forum. Keep posting here too. Rufous/Linda

Helen, I hear you on the 'dog slobber' part! I should have mentioned that I can only do this when the dogs are in their crates! Luckily, my partner gets tennis balls from the coach at the school where she works. I have a grocery bag full! I should also tell you to put a towel or pillow case between your head and the ball so your hair won't get tangled in the fuzz on the tennis ball!

I've also found that Excedrin Tension Headache is somewhat helpful if you can take it. I've had trigger point injections that didn't help, taken muscle relaxers that didn't help, had countless 'adjustments' done by my chiropractor that didn't seem to help.

I have "military neck", no curve to the cervical spine. Two rear end collisions, the second of which made the first whiplash injury flare. I've also been hit by a truck while out walking my dog. The blessing of which was the truck was moving slowly and turning the corner. While I didn't get hit so hard as to cause me to fall, it was sufficient enough of a hit to tear the labrum in my shoulder and get my neck out of whack again!

I hope you get your answers and that some of these suggestions help. I also used to use a 'travel pillow' to help support my neck while watching t.v. It did seem to help and the only reason I stopped using it is because my dog (when she was a puppy) decided it would be a good chew toy and made it 'snow' little foam beads all over the living room!

Hi Helen,

Welcome to the forum, so sorry to hear of your headaches and such. I don't have much to contribute because I don't suffer from them, I just wanted to peep in and offer support as others do here.

I hope that you can get the help you need to find out what exactly is going on and then the proper treatment. Headaches are so debilitating, I am sure you will get lots of feedback and idea's to help you cope here in the forum, there are many amazing people with lots of experience and idea's.

Good luck and hopes of pain free days ahead!

Hugs from Texas,

Pam


p.s. Pitmom - I was laughing so hard about the dog slobber on the balls, my girls bring me theirs with drool dripping and then look at me like, well - are you going to throw it or not!!!! lol

I have chronic tension migraines. Here in Canada, my physican has been prescribing botox injections in my head and neck. Glad to say it works wonders on decreasing the amount of severe migraines I get. I used to get 4 or 5 a month where I could not even walk without tossing cookies. Now, although I have a headache pretty much 24/7 I can deal with that with a time released morphene tablet. I get the injections every 3 months. Might be something to discuss with a doctor.

Hope this may help you.
Disc fusion C5 and C6, degenerative disc disease and arthritis in spinal canal, chronic pelvic pain. chromic tension migraines

Hey Helen.Welcome to HW.I definitely wouldn't want to trade pains with you.I can't handle headaches.

Does opiate-based pain medication affect migraines?

Take care and God Bless.

Rick

Bigecase, most people find it too sedating to take during the day time & usually end up taking it at bedtime. It is one those medications also that has to build up in your system as you start taking it. If my memory is right which don't count on it, lol, if the time comes to go off of it you may need to be weaned off of it. It is a medication that is used off label for so many different things & can be a good medication once a person gets past some of the side effects.

Take care.