Migraines everyday, all day, for 9 months. Help!!

Sorry to hear about your migraines.

Have you spoken to your doctor about Botox? Im trying it, didn't feel any different after the first course, but got my second lot of injections in June so fingers crossed it works. A lot of people that have mentioned it to me on here have found great results from it.

Ergh, I feel your pain with the amitrpyline, its awful stuff! My neurologidt kept making me increase my dose because it was too low to feel any effect. Eventually got to 50ml a day, for 2 days and had to stop.

I've point blanked refused to be put onto more antidepressents.

I've recently tried some anti seizure tablets called Zonegran, didn't get many side effects off it (drowsy here and there to begin with). Unfortunately it didn't help my migraines, but might be something you can try.

Hope you find some answers soon, and definitely keep in touch if anything new comes about or you need to talk. It's good to have someone that understands exactly how you feel.

Don't know aboht you, but I'm fed up of the "so you've just got a bad headache?" "All you do is complain" attitude off people.

Just to give you a little more background to know your not alone with this. Im 36 year old female who never suffered from headaches, mostly perfect health other then aniexty/stress issues relating to flying yet love travel, seen lots of the world, my current partner is from NZ, a few months ago we went there to visit, it was the longest flight I had to prepare myself for in 10 years, I was feeling very anxious & suddenly out of the blue this sudden severe migrane came on, left side of my head, intense throbbing to reduced me to tears, the pain never stopped no matter how many pain killers i took, it was rentless, I ended up in A&E 3x that week, a complete mystery to doctors I was sent home each time with codine tablets (which actually intensifies headaches) A private doctor got called out & thinks its sinsitus, puts me on strong antibiotics which of course did nothing, I then had the lumbar puncture which as mentioned was horrific but a few days later after doses of diazepam i bounced back & forced myself to fly. To my surprise 5 weeks in NZ & the headaches had calmed down, managing on nurofen alone or totally pain free days except when the dreaded flight home happened & again had a panic attack the night before but made it home & felt fine for 48hrs... out of the blue the headaches started, throbbing, relentless headaches, doctors told me again it was sinus issues, more antibiotics (2 courses) which didnt help. I went in for the scans, MRI's etc  which showed nothing was wrong with me or my sinus, nurologist put it down to anixety as a trigger which is fairly obvious.

The information given to me by the nurology hospital im under: 'Some people need a trigger, 70% of it is hereditray (my mother suffered from migrane) & for others it just happens for no reason called 'New daily chronic persistant headaches' which usually manifest into a more severe headaches such as chronic migrane/cluster (though cluster headaches are rare in women but TN is more common for girls) then there are those that over medicate causing rebound headaches. Using abortive medication usually cause rebound headaches (I chose to stay away from any of them) The headaches can switch themselves off as quickly as they came on but as everyone is different there is no exact time frame, months, years? The best option is to use a preventative (my mother suffered refusing medication & got better 3 months later, she found her jaw was causing some of the pain,she still gets migranes occasionally, espcially mornings but refuses any meds or botox injections as they often make dont work & make things worse)  I've been told to accept the reality of this condition, not to wait for that miracle day to come but to be strong & contiue to live life normally, stay busy & not focus on the pain. 

Amitypline 10mg caused complete numbness to the left side of my body with  intense pins & needles, dark thoughts & heart palpations that left my rib cage bruised. I switched to Notriplyine 10mg which helped manage the pain for a couple of weeks but had vivid nightmares of plane crashes, it dragged up all my fears but i stuck with it until I was ready to increase the dose to 20mg, my body rejected it causing leg numbness, tongue swelling & bladder problems. Doctors told me everybody has a tolerance level to these drugs so till now I remain back on 10mg which makes the pain level bearable but only just. I will certainly look into the meds you mentioned.I also take vitamin B2 everyday.

Doctors tell me its not advised to try for a baby while on medication so ive given myself the next year to focus on getting better by trying to stay positive. Family support is important so I hope you have good people around. Let me know how the botox works for you, if not maybe a complete change of scenery from normal life? Im thinking of moving abroad for a few months, maybe some sun, sea & daily change could be the trigger to reverse this horrible nightmare. So thats my story, feel free to keep in touch. Best of luck x

Go easy with sumtriptan, my GP advised me it causes rebound headaches. Only take paracetamol with a preventative medication if you can find one that works (notriplyine had fewer side effects but their all nasty stuff & take time to work 4-6 weeks) A preventative doesnt always work, usually only helps control a % of headaches then take paracetamol with it, 2 days on, 5 days off as paracetamol builds up slowly in your system, the least use of medication the better. Many stories ive read of people taking high doses or mixing meds for headaches often made it worse or cant get off them. A preventative at a low dose causes no rebound effects & could break the cycle depending on what side effects you can tolerate. we all have a tolerance level, do your research, doctors won't tell you the hard facts about what they dish out. Look for headache triggers, i noticed computers, reading, anything involving eye strain makes it worse so I got reading glasses. smoking to. Take vitamin B2 & magnesuim with prevantatives as it helps reduce the frequency. Stay re hydrated & consider physio, I have it every week to release the tension (deep tissue massage for neck & muscle spams) Keep telling yourself this is not forever.

Thanks for your reply and advuse i tried my best to trigger what causes headachs but cudnt find any result like today i feel sick have headachs couldnt even work came back from work when i have headachs i dont like anything what do you think shall i ask my gp to send me for MRI everytime wen i go to him he says they had scan its nothing major to worry about

Doctors told me to go home, take my pills & dont search for an answer on the internet or break my head trying to work out what was wrong with me.. it just happens! For 3 months I have searched every website, every book till i made myself crazy, played the events back in my head to when this all started and yesterday I remembered a few days before all these headaches started I had root canal treatment! The dentist was in a rush to fix my teeth before I was flying to NZ so he put under an intense treatment that should of been done in 2 stages.. 3 hours with a metal frame in my mouth while he operated on my tooth - I felt fine afterwards.. no pain.. no problems so i never made it an issue, infact i did visit my dentist once to explain what happened & like the doctors he told probably stress related, take your pills

Yesterday i decided having run out of options i would go back to him again having read some information online about silent infections that get deep in the root canal causing 'Chronic migrane, TN, Jaw problems, hand tremors' - light bulb switched on ! I have all those symtoms but those are also symtoms of other issues? I also took lots of antibiotics over the last months so if there was an infection surely it clear up the problem? I doubted myself but yesteday I made an emergency oppointment to see my dentist & confronted him with the issue.. please check again!! so he did & I was correct. There is infection deep in cavity that antibiotics would never be able to reach, it required light surgery again, my jaw to showed extensive strain & grinding of the teeth (TMJ)

It might be a long shot to finding a soultion but im soon being admitted to a top dental hospital for them to further investigate & next week im having a moulded bite guard to ease the pressure off my jaw. Im praying this works.

always listen to yourself & dont give up... living with chronic pain is a miserable existence, my time is too valuable to be sent home drugged up on meds xx

I dont know if you have also been reading my post as only last week did i finally find a possible soultion & yesterday got my bite guard made up which I start wearing soon.. Is a bite guard the same as a splint? How do you wear yours? How long did you use it? I have all the symtoms of TMD/TMJ but dotors tell me it could be Trigemiunal Nurolagia type 2 (TN)

which mimics same symtoms.. 

I saw my orthodontist yesterday about getting my new retainer, and while there I asked her to have a look at if I'm grinding my teeth and if that would be contributing to the migraines. But she's looked, and doesn't think I'm grinding enough to cause any damage to my teeth or problems with my jaw. She did say that if I wear my retainer at night it could help the same way a mouth guard would, but can't promise anything. I have noticed that I clench my teeth  a bit when I've got a really bad migraine.

It's my own fault tonight because I wanted to see my friends and go to the cinema, but it was 3D and couldn't wear my prescription glasses with the 3D ones, so it's killing me now, and can't sleep. Silly me

 Aha, yeah I have that problem with doctors & pharmacies. I hate walking out of my neurologist appointment with a new prescription every 3 months. Though my neurologist is very against me taking pain medication, my GP has suggested pain relief but I've had to turn it down because of rebound headaches. Then my GP treat me like I'm ungrateful because I won't accept the drugs they are trying to force down my throat.

My manager at work has learnt to keep a stash of pain killers for me though because I get halfway through a shift, won't go home because I'm fed up of the "you've just got a headache, get over it" comment off some people, and need to try get some relief. That's usually the only time I will take pain killers now though. Probably shouldn't.

Read this link on TN: http://en.wikipedia.org/wiki/Atypical_trigeminal_neuralgia

There are 2/3 types of TN, my type is Atypical Tigeminal Neuralgia, it all went over my head at first but its more common in women & mimics chronic migrane symtoms or sometimes occurs with chronic migrane, it is also linked to TMJ/TMD & often confused by doctors as neither have accurate ways to test or show up on scans MRI etc however the course of treatment & medication can be crucial in treating the symtoms yet utimatley there is no cure but for some patients it works itself out over months or years, remission periods vary, each person is different. Im lucky to have a very good GP that warns me off all these medications which cause rebound headaches & as painkillers do nothing to help only medications like trylic antidepressants or Gambetine which I have tried (anti seizure drugs) can settle the nerve. The mouth guard helps relax the muscles which are connected the trigeminal nerve which in turn doesnt aggravate it as much leading to much less headaches. After reading that you wear it every night for 2 years makes me feel really sad as I have trouble sleeping espcially now as I have chronic tittnus & fullness in my left ear which screeches when the headaches happen, I cant imagine to have to sleep with a guard every night.. i would of thought of 2 years it would have corrected your TMJ?

Yesterday I wrote you a post about TN but inserted a link which apparently is againist the rules of the chat room. The link related to Atypical Trigemninal Nuralagia (Type 2) which are burning, throbbing chronic type headaches more common in women, this nerve is connected to the Jaw hence why symtoms can be mistaken with TMJ or causing TMJ. Since getting ill all I've done is study areas connected to what's been causing these headaches, it was my GP that told me about TN, not my nureologist even though he's considered the best, he refused to have his medical opinion challeneged & even got so angry saying I was depressed & suggesting I was a hypocondriac that he made me cry in his office, that was the last time I saw him and took matters into my own hands.. at £170 a consultation I really don't need his help, I have an excellent GP & a helpful dentist, ultimatley there is no miracle cure, its about finding the right medication, trigger & diagnosis, as long as the scans & blood tests show there is nothing life threatening, don't rely on doctors professionals, my dad went everyday for 4 months to his GP saying he felt unwell until he literally turned blue & found out he had a rare cancer, gave him 6 months to live & told him to enjoy those months at home, my grandmother sat in the libary (no internet in those days) studied his cancer till she found small hope for a new chemo trial, my dad is still alive with us today.. so don't let anyone make you feel bad for what your going through, its your health & your children are relying on you to.

My understanding is a bite guard should be worn for a approx 6 weeks before seeing any imporovement but to hear youve been wearing it for as long as you have every night was a real surprise. My advice is to read up on Atypical TN type 2, there is no specfic tests for this, its based on symtoms, aniti sezure drugs to reduce the swelling of the nerve, I have never tried this medication as it comes with lots of side effects, I already struggle taking low doses of Antidepressant Notriplyine, my GP said if the AD don't work or eventually stop working the next step is to try specfic medication for TN but these need to be monitored by your GP, stick to low doses of anything they give you. Keep me posted 

I came across your chat while checking the rest of this thread. If it helps there is a forum within this site on TN here https://patient.info/forums/discuss/browse/trigeminal-neuralgia-2257

Regards,

Alan