I suffer from daily headaches, once or twice a week they progress into a migraine where the pain is usually an 8/9 out of 10. My Neurologist keeps swapping my preventatives in the hope that my migraines will improve however he is very reluctant to give me anything to manage the pain when the migraines become unbearable. The only medication I have to take when the pain is severe is (Naproxen 1000mg Slow Release) that doesn’t help all that much and takes several hours to kick in.
Does anyone else use anything that works well to manage the pain?
I understand doctors fear addiction in medication for chronic pain sufferers however I can’t function at all when the headaches are this bad. Any feedback would be hugely appreciated.
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JDSouza90
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Hi there 😃 when mine are severe ( which is 3 days a week normally ) i take sumatriptan injection, there's 6mg in the injection but i recently learned to split it into 3x2mg injections so i split it up. Seems to work a lot better as it's a small injection every 2hrs x 3.
You tried sumatriptan tabs, rizatriptan tabs or melts?
I also have a migra cap filled with ice packs.
I take magnesium which seems to help with pain behind the eyes. I take it 30mins before bed.
B12 and D3 also help me.
There are so many people who've tried lots of diff things but it's trial and error to find your one.
I wish you luck and a bit of rest bite it's awful 😭
Hi Cally Many thanks for your reply, Sumatriptan does help mine a lot however my neurologist doesn't like me taking it for some reason. Ive never heard of it coming in an injection form. Do you have the injections at home and inject them yourself? Which country are you in? Im in Australia so it may be something we don’t get here. I have had two rounds of Botox, the first round seemed to help a lot but the second round not at all. I have recently started on Lamotrigine and I am coming off Lyrica. My Neuro thinks he will get it sorted but I think he is just trying to keep me positive.. As I am sure you can understand its like a curse
Hey 😃 I'm in Scotland and get 4 on prescription a month, they're like an epi pen, preloaded and i have them at home. As soon as it starts building i inject myself, they are a god send at times.
I've had botox 3 times, the only relief i felt was the pain behind my eye's eased but i insisted they inject between my eye's the 33 over my scalp done nothing. I've also had occipital nerve block twice with no effect.
I have had all tablets and hated lyrica oaft!! It was horrible😭.
I found a specialist who dealt with faces ( maxilofacial) guy he took one look at me ( i told him nothing about my migraines or treatments ) he instantly said i had a problem with my jaw and proved it with a MRI.
He confirmed TMJD and I'm being treated / operations to fix it. Causes severe daily migraines, neck pain, eye pain, back of head agony, dizzyness , ears ring and confusion.
Yes I have also had occipital nerve block and it did nothing!
Wow TMJD sounds freakishly like my symptoms, In fact for the last couple of months I have been complaining about my Jaw hurting when I eat certain foods! Out of interest do you usually go to bed with non/mild headache and wake with a really bad headache?
I have always questioned if I clench my jaw at night!
How did you end up seeing a maxi facial specialist. Was it a suggestion from your doctor or neuro?
Honestly it's midiagnosed as severe migraine all the time. My jaw feels tired if i speak for 10 to 15mins i even see a slight swelling on the left side just below my cheekbone.
I go to bed everynight with headache, i wake with massive pain behind my eyes and the back of my head (just where my skull meets my neck) if i don't get up immediately it turns to migraine really fast.
After all migraine hoops i had to jump through with no results at all chiropractic help, 22 physio sessions, acupuncture I finally had enough. I googled the best face guy in Glasgow /Edinburgh and paid to see him. He operated within a wk but I'd waisted so much time with neurologist that my jaw is now locked ( on the bright side I've lost all the weight the migraine meds put on me eating through a straw😃 always a brightside!!)
2nd op didn't work so now getting cerezen implants made ( google cerezen )
Don't waste time with neurology if you think it's your jaw. I just kept hearing "medication overuse" it's total rubbish, neurologist just use that to buy time because they can't help!!
Wow Cally your symptoms are so much like mine! People think I’m crazy when I say if I stay in bed it gets worst that’s why I try to keep distracted as rest really doesn't help my pain. I am so over neurologists and just like you I have tried everything under the sun physio, chiro, remedial message etc.
Should I ask my GP for a referral or go to the dentist?
I have a horrible feeling I will get phobbed of by the GP as I usually seem to be doctors but I am adamant I want to explore this further.
Find a TMJD dentist in your area it should be quite easy to do because it's highly recognised now and once you have confirmation ask about cerezen implants.
Cut out all the ops. If i knew about cerezen i would have gone straight there before the ops.
I know people think your putting it on because you look fine.
I was recently told by a friend on here to fill a hot water bottle with cold water and keep it in the fridge. I sit with it jammed between the back of my head and the sofa 😃 works great 👍
Hold ice packs on your temples before you take tablets. I've never known a migraine to ease off with only ice!!
I've had migraine since i was 14 but this is worse as you can't ease the pain with anything.
I was given pain meds for cancer patients and 4 bottles of morphine! ! Nothing eases it at all.
Try to eat only soft foods.
I've had 3 night guards, save your money, they only help for a week or two.
I've spent 7 thousand pounds trying to fix this and finally think cerezen is the answer.
Good luck, let me know how you get on. I'll put an update on here when my implants have been done in about 3wks 😃.
I really hope you've found your answers and get relief fast. 😃
Sorry to butt in - re TMJ this is really interesting - have just looked at the Cerezen implant and the diagram/info showing where it's placed and why. I've had so many problems (along with the migraine) with my ear canals for years, eg when my ear canals are blocked which happens frequently, my headaches go back to daily from weekly. I even had a referral to an "ear specialist" recently to look at the connection between my ear canal problems and migraine (which he thought were "unusual" - clearly they're not from reading here) but he wasn't interested, had a quick look in my ears and said "normal" and that was it.
A lot of my headaches now begin with a stabbing pain which feels like it's deep inside my ear, also base of the skull and up into the side of the head around the ear, then up behind the eye.
So it sounds like possible TMJ involvement. I can't see any way of NHS being interested in this though and can't afford to go private.
Hi Frodo 😃. I can't recall the amount of times i was sent to ENT/ given antibiotics for blocked inner ear and same side blocked nostril.
I asked over and over if this could be connected to my jaw issues, was told they didn't think it was likely. It will be very interesting if my ear clears once my jaw is put back in line!
Your dentist will be able to confirm TMJD, they do xrays and occlusion tests.
Most dentists can offer payment plans to assist with the costs. My charge is £500 for implants and £150 to have an audiologist come from London to take my impressions.
They offer money back guarantee their that confident .
I too have the sharp pain in my ear and in my eye. Waking with horrific pain behind my eyes and very tight feeling temples is the worst because it's bordering migraine every day.
You should get a diagnosis and ask about cerezen payment plan.
They can make mouth guards but my experience wasn't great, had relief for max of 2wks. If you take this route make sure it's a soft guard.
Frodo if you get a diagnosis of TMJD your GP should then refer you to a maxilofacial NHS specialist. The first step will be an athrosentisis which does work on most people, just not me!
I was refered in January this yr and I'm still waiting to hear so i had given up waiting and went private
I'm currently taking it up with the neurologist who diagnosed hemacrania continua because due to his diagnosis all medical professionals i seen after this where treating me incorrectly. No one would listen when i said all my symptoms.
The face specialist has never heard of cerezen either and showed very little interest, dismissed it as some sort of hocus pocus !! Can't wait to prove him wrong!!
He wants to cut from temple to lobe and fix my jaw but he would cause permanent nerve damage.
WHY CAN'T THESE SPECIALIST LOOK OUTSIDE THEIR OWN LITTLE BOXES!!
I go to bed fine and wake with the start of one early hours of the morning, was most nights but are getting less frequent. I know it sounds daft but try drinking a cup of coffee in the evening. I was told by my neuro never to drink coffee but someone on here advised to try it for night time headaches and it has helped me
For me the injections are best , work a lot faster but i also find that if it's still there after 2hrs and i take rizatriptan melt it wipes it out. Been wiped out since monday but I've run out of melts i pick them up tmrw.
I know some neurologists say not to mix triptans but mine has no issues with it and it definitely works better. 😃
Hi i never get nausea with the injections. I know it's a bit scarey injecting yourself but trust me when you know the relief your going to feel within about 10 to 20 mins it won't bother you. 😃.
I get 4 on prescription a month and 12 100mg sumatriptan and 8 melts.
I try to take as little of them as possible and go with ice a lot but i get hit with really bad migraines that can last 7 days or more. Really frustrating 😭 . I have mild to moderate headache every day 24/7.
I totally agree with Cally01, the injection or pill form of any Triptan is the only medication that helps me too. If your current nuerologist won't prescribe them ask for a second opinion. I just don think any Doctor that hasn't had a migraine understands the pain. I'm sorry your in so much pain. If ice doesn't help you try heat pads (thermacare) you should Be able to find them in the grocery store. Ice make my migraines worse. Good luck
Thank you to everyone here... I had almost lost hope... My story is so similar to the comments here... I had tried everything, but refused to go on pregabalin until it got so bad 4 years ago I was hospitalised
With pressure from doctors abc family I caved in. Having migraines up to three times a week, daily headache and Vi sting neck and caranial pain I gave in
Four years later I’m no better off... I’m worse off the medication has stopped working and just being on them the side effects are horrendous but every time I try to come off I get constant migraine that’s unbearable
Have you tried Flunarazine preventative? I have suffered with new daily persistent headaches sine June last year and they seem to be helping. I have been told it takes time and you have peaks and troughs. Right now I'm having the migraine days you speak about. I have sumatriptan 20mg nasal sprays which u take on the onset of a migraine - they ease it a little. I do the ice pack trick and have a Vicks nose inhaler for colds which I find soothing .
Hi yes unfortunately this was one of my first ( of many tablets ) I've taken. I carry deep freeze everywhere with a pot of vicks and rub both on my neck and temples throughout the day. I get short relief but not much.
I know this sounds really really obvious but having tried many different varieties for years and years I have finally found that actually a soft memory foam pillow has been helpful.My headaches/migraines definitely come on often at night and get worse until have to get up because lying down is unbearable.I got given this pillow about 6 weeks ago and was astonished that in the morning more often than not my head was ok.I had been told it my jaw, (nearly got talked into an operation)and neck etc etc.I had previously tried a neck brace to sleep in to try and stop neck/jaw moving and being badly positioned.Anyway,when you first lie on pillow it is not very comfortable but when you can wake up and feel ok,it is incredible.Not saying this is a cure but has certainly helped and I seem to be taking less sumatriptan than usual.I think the head and neck angle is held in a good position with the wedge type pillow and maybe blood flow better.And by the way,my Dr has said I can take up to 20 sumatriptan a month if I have to.I try not to take more than 7 a month but sometimes I have to take then often to get through.Only 4 this month........
Hi Kiwi 😃 yeah i took the pillow/ neck brace root a while ago. Combined with 14 sessions with chiropractic, 22 sessions with physio, 10 acupuncture / 6 indian massage....the list goes on.
Occipital nerve blocks, botox every preventive tablet, gum shields and finally Jaw operations.
I'm hoping cerezen is my answer because none of the above have had any impact ( which to me , indicates it's not migraine which is the cause ).
I'm glad the pillow worked for you. I even bought a Tens machine and a Cefaly.
Hi Cally, So I went to my GP today and he has given me a referral for a CT scan of the TMJ's. Is this how you got your diagnosis? I read online that CT scans don't always show TMJD so want to make sure I don't get fobbed off if the CT scan dosent show anything
That's good news. I had MRI scan. They had me lay with my mouth closed for 15 mins then they had me hold a syringe between my teeth for another 15mins. My cartilage wasn't in the right place when closed or open.
I think it shows up best with an MRI but if they know what their looking at they should see it with a CT. The dentist uses CT.
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