Occipital Neuralgia & constant neck stiffness

[Toto88]

For over a year now I’ve had chronic burning head neuralgia at the back of my head - either side of top of head, behind my ears & a constant feeling like I’ve been smashed by a baseball bat ! I also have tinnitus/hypercusis & pain behind my forehead & eyes ! I’ve tried the nerve block & it did absolutely nothing ! Amitriptyline - clonazepam & I’m 14 days on Duloxetine 30mg but again no pain relief ! I’m thinking of trying gabapentin again but last time just on 100mg I was so spaced out my muscles were all twitching ! The pain management team don’t know what to do with me & im bed bound most day ! Got a bottle of morphine upstairs but I didn’t want to get addicted to it so haven’t as yet tried it ! I’m in unbearable pain & if anyone can offer any advice that would be wonderful x some days I just wanna give up its that bad but somehow I manage to keep going for now ! Anyhow sorry for sounding so morbid 😐

[Kim327]

Hi Toto88

I am so sorry you’re dealing with so much pain. I wish I had answers for you! Morphine is definitely a scary thing and would never want you hooked on something.

I have had pain on my left side, ear, jaw radiation down to shoulder arm and even my leg. TMJ diagnosis. . Gave me shots in my jaw but that goes away after a few weeks and pain returns. Even with a night guard. Like you I don’t want the drugs that can cause dependency or addiction. I have had head MRI and CT scans. Have you? I was also diagnosed also with BPPV Benign paroxysmal positional vertigo.

I don’t know what to think anymore and understand your situation all too well. Feel like a guessing game of guess my diagnosis!!

I wish there were some words I had to help you figure out what’s causing your pain. You can’t go on feeling this way. Keep seeing specialists if you can and hopefully someone will be able to find what’s going on. I never want you to depend on any medication that can cause you more issues down the road. My husband has always said the less pills the better. There are drugs and their are medications. Medication are there to help you and You need to Stay away from drugs that can cause other more serious problems down the road.

I hope someone give you answers soon! You’re in my prayers!

[Ant197346 in reply to Kim327]

I'm going through the the same thing I've had chronic Pain issues for the last five years it's awful and some of the pain is so intense, I've had 3 morphine shots into my affected limb but the pain still keeps coming back, its literally awful and wouldn't wish it on anyone.

I was diagnosed with OA and Severe CRPS three years ago, I get sleepless nights even on medication, I often find myself waking up sometimes crying because of the pain.

Just wish the specialists would actually tell me what's going on because not one of them know at all even I don't, I've been having mobility issues for the past three years and ended up in hospital last Saturday because I collapsed at home. It's totally scary, I've had MRI and everything associated with it but they still uncertain. I've had blackouts also because of the pain levels it feels like someone is hitting me with an hammer which makes it even worse, the only medication I'm on is painkillers and amitriptyline to try and help me sleep but it's not working

[Kim327 in reply to Ant197346]

Hi Ant197346!

I am so sorry you’re in such terrible pain! I wish they could help people like us learn what’s causing all of this. Have you checked for nerve damage? I was schedule for this test myself due to the left side pain on my neck with my neurologist back in March but then Covid hit and my appointment was cancelled until further notice.

I have had cortisone shots in my neck and was going to do the epidural but held off because I wanted to learn why. If we don’t know why the pain is there can we really cure it. Throwing meds and masking the problem is what doctors tend to do. I’ve been sent home with many prescriptions I didn’t take or even fill after reading side affects and risks.

I hope you find answers too and you can get to feeling better soon! Keep searching for a good doctor and don’t settle. If it doesn’t seem right it probably isn’t! No one knows your body better than you. I’ve been told it’s stress but then I’ve had more than a dozen different diagnosis. Anxiety and depression was my favorite. Really? Who wouldn’t have anxiety and depression with pain no one can figure out why! ,

Currently I am in menopause, I have Graves’ disease and hyperthyroidism (testing bloods tomorrow to see where I am), BPPV (vertigo), uterine fibroids, herniated disc, pinched nerve, mild scoliosis, degenerative disc disease, gastritis, TMJ, deviated septum (had surgery in Jan to repair) and the list goes on. I have had major dental work which has added more damage to my TMJ issues and ear pain. I guess my pain has answers but can it really be all this at once? I don’t know or understand it but I’m trying my best to avoid drugs that can cause dependency. Sounds like your pain is more severe and must be awful. You need to do what’s necessary with medication to help you cope. I also wake up nights all the time with pain, hot flashes and but it creates more fear and anxiety than anything.

Keep searching for answers and I hope soon you find relief! I will keep you in my prayers!

[Ant197346 in reply to Kim327]

Thank you it means a lot, it's literally destroying me it started on my right side originally before it moved over to my left side, I get back pain all the time and my neck has been sore since last year I also find it hard to swallow too feels like I'm choking, I ended up in hospital last week and since they discharged I've had intense back pain between the shoulder bkades, my left arm has also been intense, maybe I need to be more persistent with them, I have to see a neurologist next month maybe they can tell me what is actually going on

[Kim327 in reply to Ant197346]

Please keep me posted ! I hope you find the answers! I have been to just about every specialists to find answers and will keep going so I understand the frustration! Went to ER 4 times too. Sent home frustrated. It’s blood tests, CT scans and MRI and if they see nothing they think nothings wrong. Very hard! Feel better soon!!!!!!

[Ant197346 in reply to Kim327]

I'll keep you posted thanks for the well wishes.

I feel what your going through

[Arnhem]

I feel for you to.....Have had excruciating pain on right side of head, ear and neck, with eye pain since biopsy for Temporal arteris diagnosis....steroids (prednisolone) sent me mad when on 60mg a day and since reduced to 25mg the daily pain has got worse but won't stay on higher dose....Dr gave me 30mg Duloxetine a day to help with neuralgia!.... ended up in A&E ...ecg and bloods done, looked at MRI scan done some time ago and said nothing wrong so discharged......have neurological (telephone) appt on 31st July and best hope will be to get someone to actually see me (GP also telephone now...hopeless)....unless it's a bit hanging off no-one seems to know what to do other than give tablets that don't work......I'd keep trying...I write to the consultant (s) between appointments to tell them exactly how I feel...they can't say they weren't aware then, and it saves time going over the same thing when (if) they call.....keep pushing...I'd avoid the morphine if you can....hope you get some relief soon......nothing worse than feeling Dr's don't understand or take it seriously....take care

[gascoigne in reply to Arnhem]

I had problems with my head and neck until another Dr. suggested I saw the pain team. I have had injections in my neck and head about 4 times over the past two years and what a difference it has made.

[gascoigne in reply to Arnhem]

Just to add to my last message. I paid to see a consultant who did an ex-ray on the top of my spine and saw that one of my discs pressed on a nerve and told me to come off the steroids I had been on for 12 years, after that I saw a member of the Pain Team who injects Botox.

[keekee14]

i’m dizzy zy and lightheaded with these symptoms. my vision is super weird too. i have heart raving sometimes. my shoulders snd neck hurt so bad.

[Lanakay]

After nearly 3 years being treated for PMR now MRIs have shown I have degenerative disc disease. I have had 2 epidural and started out on 400mg of gabapentin 3 times a day. I’m still not pain free. I am Dorn to 4 mg prednisone on a slow taper. I’ve seen 2 primary care physicians, 2 rheumatologists, a physiatrist(that is a specialist on muscle/skeletal) problems. I’m 73 and still hurt! I don’t know what else to do!!!

[Hidden]

Hi there, sorry that you are in so much pain . Have you any scans done on your brain and spine to see if there is anything going on there .

[Entela15]

What about botox?

[Jaydi]

I had several sets of steroid occipital nerve Injections which worked for a limited time only. I’ve since found out the only properly effective way is to have them targeted under CT guidance as otherwise its just hit and miss.

However eventually (and co-incidentally), I was diagnosed with hydrocephalus (excess fluid in brain). After having a shunt fitted to drain the fluid and relieve the pressure my head and eye pain was one symptom that I found pretty much disappeared (main symptoms being loss of balance and memory loss).

[Toto88]

May I ask you plz was the nerve blocks done in hospital ? Are u uk based ? Just I’ve only had one on the left side & what I couldn’t understand was whilst it was being done the pain specialist had an junior dr do it - he kept saying to her no over here whilst pressing on the occipital area ?? He was wearing these weird glasses which I don’t know is some device to show wear the nerve is but if she was being told she was in the wrong place & twice how on did she know if she was accurately hitting the nerve ? I’m going to have to spk with them I think !! With regard to the excess fluid on your brain how was this found out plz - my brain mri & ct scan came back normal but so did a good friend of mine & she too is now in London have a shunt fitted ! All my MRIs etc have been done without contrast & I have asked for a lumber puncture but been refused ! I’m now in the process of spkg aswell with a private CSF specialist in London !! The pressure in my head - eyes - ears & facial jaw pain is horrendous!! My temples are in chronic pain aswell ! Did you at all have ringing in your ears & constant pain & fullness aswell plz ? Any advice is most appreciated - I’m in horrendous pain 24/7 & it’s been a year now !! Thanks 🙏