I had Botox for the first time yesterday, so it would be good to hear other peoples experiences. I'm getting some facial pain just now which is one of my on going health problems.
The neurologist thinks the facial pain is Trigeminal Neuralgia and the Botox may have some effect on this as well as helping the migraine. If it does then life could be great!
I am hoping, if it works, that I might be able to stop taking some of my medication.
I take;
Nortriptyline
Propranolol
Topiramate.
It's the Topiramate I want to stop as it affects my thought processes + memory among other things.
I can still move my eye brows at the moment so it obviously is too soon for the botox to be working yet. My family and friends were shocked at the number of injections (31) I had to have but it really wasn't so bad. Just the quick stinging prick of the needle, the nurse was very experienced and well trained. Then afterwards my husband and I went for coffee and cake, I thought I deserved it.
Going to take some Paracetamol now to see if I can get rid of this pain.
Hi I'm having Botox on Thursday , I'm only having 15 injections and only one side as I have had a DBS done on the left side so they have not to go near the wires . Don't like the thought of the needles but I had brain surgery and I was awake for all that so I should cope with this I hope lol .i hope it works for you and you get lots of pain free time . Elliott x
Hi week and two day since Botox and yes it was not as bad as I thought . My migraine is about the same . I slept a lot for 3days then it calmed down . Not felt any tightness or anything I'm waiting for this big reaction and there has not been . Is this right . I had the full 32 injections so is this what happens or has it not worked . Elliott
Day 2 after Botox.
Eye brows still moving, no pain at the moment. The Paracetamol last night did the trick.
Hi Elliot, really don't worry about the needles. They are the smallest size needle the ones that diabetics use for insulin. You've had DBS while awake so a few injections are not as scarey as that. Good luck and treat yourself to something afterwards, that's how I get through things. If I've had a tough time I deserve a treat, even if it's just a coffee and a cake, I'm sure you can think of something.
I've got severe muscle pains today (side effect of Topiramate) I think I did too much yesterday, need to take it easy today. I'm working this evening. I'd like to take the dog for a walk but I know that will be too much for me so he will have to potter around the house and garden with me!
I'm 2/52 post first course of botox for migraine. Forehead is totally dead, my face feels like it went to the dentist without me! Really struggling with persistent aura since botox including pins an needles in my forehead. Had two severe migraines since an daily headaches also. My Neurologist took me off all preventers ahead of botox and left with me maxalt to help abort symptoms..it's not working an I'm finding things quite tough. What do you take as preventer and reliever? I'm hoping botox will start to work miracles but pretty fed up right now.
hi, i understand how your feeling there is just no let up is there? i had such high hopes for the botox but i think i feel worse not better since having it 17 days ago. its hard to stay positive when you feel so awfull.
Oh im sorry to hear you are also struggling. I'm still Fed up!!Had vertigo an headache all day, lose so many days to migraine, totally fed up! Not had any respite since botox, but was warned by neuro it might b a slow process an shouldn't try an measure effect till after the 2nd treatment. I have to say the sensation in my face secondary to botox is putting me off...I feel numb in the forehead, temples an jaw...so strange! Here's hoping for a miracle!!
I had my botox through nhs..was a long wait to get to treatment.
Hi Sybille, I had my botox through the NHS, it was authorised by NICE last August I think. You
would need referring to a neurologist first. You will find some info on most migraine sites eg National Migraine Centre nationalmigrainecentre.org.uk, Migraine Action Association migraine.org.uk. I think the guidelines state if you are getting headaches on 15 days a month with at least 8 of these being migraine then botox can be given, but you need to check.
Hi Laurak82, my preventers are nortriptyline, topiramate and propranolol. The only thing I take when I get an attack now are paracetamol and ibuprofen and sometimes buccastem if I feels sick + then I go to bed. I used to take triptans but ran into trouble with medication overuse so I don't take them now.
Did you have the 31 injections as advised by NICE? I'm starting to feel a bit strange in my forehead but the muscles are still moving.
I did have the full 31..my forehead is totally frozen, not able to raise an eyebrows at all!
Face has felt so strange since treatment..an today's migraine has wiped me out with intense pain an vomiting. Not bothered with maxalt as know it isn't work so stuck with migraleve but not helped really.
I was intolerant of topiramate and propanalol..never tried nortripyline must he one of the only ones I've not trialled! Very worn out with migraines now, quality of life is awful. Neuro felt he couldn't fully assess response to botox unti after 2nd treatment which is due in 12 wks, I'd imagine he will b reluctant to start me on any new meds so will have to carry on putting up with this. X
Day 3
I can still move my eye brows but my whole forehead feesl strange, sort of numb but I have some feeling when I touch it. I'm sightly worried as I am getting this feeling right at the outside edge of my eyes. One of my worries is that I could get drooping of the eye lids, that would not be a good look!
I woke early this morning and was starting with a migraine but suprisingly it didn't develope into anything!
Hi laurak82, hope you had a better day today. My neurologist hasn't taken me off my meds, I'm expecting a call from the nurse this week, she is going to ask him if I should cut them down or stop them now. I hate all the side effects and I'm just getting fatter and fatter. But I suppose that is the least of my problems.
Day 4 post Botox.
No dramatic change to facial movement, I can still move my eyebrows. 15.30 and no pain so far today but just exhausted by lunchtime and had to go to bed for 2 hrs, This sudden tiredness is typical and all I can do is sleep when it comes over me, I can only think it is a side effect of the meds, so I can't wait to get off them, but also scared I might end up back in the severe pain I was in before I started on them. I was in bed for almost 3 months crying with the pain every day, I certainly don't want to go back there!
hello, i had my first botox treatment 31 injections 17 days ago. i have not had any positive result so far and feel so fed up as in constant pain. i had a migraine when it was done which only made it much more servere and i was in bed for 4 days with little relief from my meds. my eyelid has also dropped and my eye is puffy which im unhappy about. my forehead is now smooth of lines but i have a very heavy feeling just above both eyes which does not go away. this is like a dull persistant headache which gets worse with any activity. another side effect seems to be a stiff neck at the base of the head which i never had before. i have spent lots of time with ice packs and have taken medication every day since having botox which i,m unhappy about as i had just come of all meds for 6 weeks previous .jenny you seem to have had a better result and its still early days so thats good. i was told it could take up to 6 weeks but the way i feel now i,m not sure about even going for a second lot!
Stick with it! I have botox for facial pain & migraine every 4 months. It takes about a week before I can feel a "heavy" feeling in my face muscles, then things start to settle down. It can take a while to work - it took a few attempts before I got fantastic results, but even after the first lot of injections I noticed my headaches were much shorter ie minutes instead of hours.
I find I can get very tired after the botox - it's worse if I'm not doing very well when I have it done. This can last a few days. I've also had migraines after having the botox, but it's worth it for the weeks when I get some relief.
As for the facial pain, I also have botox injected into trigger points in my shoulder which are causing the pain in my face. I'm having physio as well, as the two things combined are helping. I rarely need medication now.
I hope you get some good results soon.
Day 5 post Botox. Woke with migraine today, had some breakfst, eating sometimes eases it but not today. Took paracetamol and back to bed. Had to go to the dentist so dragged myself out of bed. The radio was on loud in the waiting room but they were ok about switching it down. I was hoping the local injection might numb the migraine too but it didn't. Will take more painkillers and go back to bed. All the things I had planned today will have to be put off once again, but anyone who has migraine knows what that is like. It's good to have an umderstanding family.
It's difficult to write/typw when I have migraine, it's like the messages don't get through. I also have difficulty reading out loud.
Thanks for the replies I'll just have to wait and see if Botox works for me, it seems like it works for some and not for others.
Day 6 post Botox. I was very "delicate" this morning and thought the migraine might return but it stayed away and I was able to take the dog out, that was a treat for him!
Then I was able to go for my hair cutting and then on to the supermarket where I had lunch before doing the shop. So long as I rest in between doing things I'm not too bad, but by the time I got home I knew I had done too much. Good job I had bought a fish pie for tea so I didn't need to make anything. Sometimes I think ahead and get it right.
I've just looked at "What counts as a disability in law?" on the HSE web site and migraine is actually mentioned, go to hse.gov.uk/disability/law.htm for further information.
Hi glamourpuss, hope things are improving for you and you are getting some relief.
Hi teadrinker, has your facial pain ever been given a diagnosis? Ive had this for about 2-3 years now and no one seemed to know what it was. The National Migraine Centre thought it might be atypical migraine. The first neurologist I saw eventually just shrugged his shoulders and said that I get multiple headaches. The neurologist I have just seen almost immediately said it sounds like Trigeminal Neuralgia, well I know why they call that the suicide pain, but at least it is a diagnosis and it helps me understand it.
Hello, sorry for not having replied sooner, I hope you're feeling better by now. In answer to your question, it took 6 years to get a diagnosis for the facial pain, although it doesn't really have a name. I have some problems with my posture due to a mild curvature of the spine and some additional ribs, and as a result am a little lopsided. The strain of everyday activities such as driving and typing, not to mention having children (my pain started when the youngest was 2) has caused little knots of muscle to develop in my neck and shoulder. These are called trigger points, and pressing on them lead to pain in certain parts of my face, and even inside my mouth. Trigger point pain is well documented (if you google it you will find it) and was mentioned a couple of years after my pain began but it took all that time to arrive at that diagnosis. I think I just got caught up in the NHS system and different doctors had different opinions and wanted to try different treatments. The good news is that I am having physio to work on releasing the trigger points and it is having a positive effect.
Trigeminal neuralgia was also mentioned but ruled out as I didn't have all the symptoms. I was also investigated for temporomandibular joint disorder (TMJD). And also told it was all in my head when I failed to get better following nerve blocks - which cause me to have migraines! Don't worry about the term "suicide disease" - I know someone who had it but managed it successfully with carbemazepine.
The other problem for me was that I wasn't diagnosed with migraine until a few years after the facial pain started, but once I had the migraine diagnosis it was obvious what it was. I then realised that some of the really bad face pains were actually migraine. It all got interlocked with itself, but for me, the treatment for both problems seems to be working. I suppose it's the trigeminal nerve that's involved in both facial pain and migraine headache.
I hope this makes sense. I am so slow today at typing and talking, very forgetful and incredibly sleepy. I suspect I am having a migraine that started in my sleep - I felt slightly sick earlier - but the good news is that the strange pain & sensations in my head are very dull so I haven't needed any medication. The magic of botox.
hi there,, the guide lines are between 19..31 injections...in order for anyone to take me seriously i had to take myself off to the migraine surgery centre in london & got 4 jabs for £350 wow i know,, but at long last nhs pain specialist has said ok to botox & i had 8 jabs 4 weeks ago..still not enough but fingers crossed next time im hoping for more,, ( quite disgusted in the megre amount i received ) considering the only cost nhs £9 each..but in saying that i felt some relief in 2 days..far from a 100% but hopeful,, im now on 2 triptons per day & 2 x 10mg pizotifen tablets daily..plus a couple of paracetamol...i would never wish this on anyone..i done my own research & then I TOLD MY GP.. i finally knew what was wrong with me,, i was right...my whole experience i will never forget....its taken me 15yrs to get to where i am now..
needless to say ive made a complaint to my primary care trust...after at 57 been thrown into a detox centre ( with wild teenagers running around/ being threatened & sexual advances from someone,, & because i could take no more i walked out,, or should i say crawled out...& then i was dropped totaly & had to do a full blown detox at home on my own with not even 1 gp coming to check on me..& yet the nhs web site says home detox was available !!! but i was refused,, not to worry...im not going to let this drop...im a gran,, i dont drink or smoke,, i was photographed breatherlized & finger printed in this detox place,, im disgusted....
1 week +2 days post botox. Only had one day of migraine, it's too soon to say if it's working. I'm just waiting for a call from the Dystonia Nurse to see if/when I can start reducing some of the preventatives that I'm on.
Hi janbrooks2009, what awful and distressing experiences you have had! Are you able to look on the bright side and somehow put all that behind you? It sounds like you are getting some relief from the Botox injections, good luck with that. I used to take Triptans but I think I was getting some degree of medication over use headaches, so I went cold turkey and don't use them now. But they did help me to stay in work at the time.
15 days post botox. I don't want to speak too soon but things are pretty good so far. I have reduced and stopped the Topiramate I have been taking, so fingers, toes + everything crossed. It is my dream to be painfree and to have some energy!
Got to do something about my weight though. My GP weighed me (I tried to avoid the scales, but no luck!) With a BMI of 29 I need to do something. I've downloaded a great app that gets you to put your details in and then shows how many calories a day you can have. Also has the calorie content of any food you can think of. I'll give it a go.
Hello all, this site is new to me, but I'm so pleased I've found it - I've just had a look through the thread and it's very interesting and informative reading everyone's experiences.
I am currently on 100mg Topiramate and 25mg Amitriptyline, after trying many different combinations of drugs over the years without success, and had botox for the first time - 20 injections - on 21st May. I was told not to reduce or change my meds and come back for a review and botox top-up if I felt I wanted it in September, so I have another appointment booked for then. I feel that the intensity of the pain of my migraines has maybe eased slightly, but unfortunately the rest of the problems haven't. The daily visual disturbance/aura, the confused feelings, the woolly-headedness, the inarticulation, the 'living in a bubble' feeling, the sheer exhasution, the inability to even think straight half the time, the depression, and the insomnia is all still there. I don't know if I was hoping for a bit too much from the botox! The thing is, I'm not sure if half of the stuff I have listed are symptoms of my migraine any more (I've had them for over 32 years) or whether the Topiramate side effects make things worse?
Anyway, good luck to everyone - I really hope that botox turns out to be something that will work for us!
Hi Duckerella, it is now 22 days since I had the botox, I had the full 31 injections. I have had only 1 severe migraine and my facial pain is non existent. I was not expecting such a good result and I am a bit cautious as I have had meds in the past that have worked well initially, but then after a short while the effect wears off. I will keep my fingers crossed.
One of the reasons for having botox was so I could come off medication as I seem to have so many side effects. I have stopped the Topiramate as I think that has caused poor concentration, difficulty searching for words, and difficulty articulating when tired, among other things. I will perhaps cut down on the Nortriptyline next but not for a little while. I am easily exhausted and often need to have a nap during the day when I just cannot keep my eyes open.
I am just on nortriptyline and propranolol now both of which I have taken before with no real problems.
Thanks for that JeanyB- I too was hoping to stop the medication by having botox, but when I asked the consultant who administered the botox if I could stop, he said, 'not just yet!'. So I think I will have to keep taking the same dosage of Topiramate and Amitriptyline until I go back for my review and botox top-up in September and see what he says then. I feel since I have been on the Topiramate, my really dreadful twice-weekly auras have lessened into daily shorter visual disturbance which I can cope with better ( I am off sick from work less) so I am worried about giving them up, but on the other hand, the side effects from them are rotten - they are just as you describe! Although I don't know if they are all just side effects of the Topiramate or actually part of my transformed migraines - it's so hard to tell without doing a controlled experiment by stopping each medication and monitoring symptoms but I just cannot afford the time to do that with working part-time and having a very energetic two year-old to look after. Good luck to you and all the others going through this, and let's hope we continue to find better pain management.
Well it's just over a month since I had the Botox. I've been getting slight facial pain + I had another severe migraine yesterday not sure if it was due to working on my new mini iPad or something I ate. I have had problems when working on a laptop before. It does seem that the Botox is helping though!
I was just wondering how you were going with your Botox? I am on 300mg of Tomprimate and it stopped working a couple of months ago and the Neuro has just now suggested Botox and i dont know anything about it but need something to work.
Hi everybody, -JennyB -I have been reading your posts in particular as I am seriously thinking about having Botox and from previous posts, it didn't seem like others thought it was worth it, so after reading your story I think I might give it ago. I am in Australia and as wondering if someone can tell me is NHS (in UK) same as our Medicare? But I would sell my house, car everything I own to get money for any treatment that would help with this herroundous debilitating illness. I do love this forum as it is great to know we are not alone out there in the big wide world of migraines, good luck everybody
I am about to have my 5th course then it stops to see how u go without it. It never gives me a clear day of pain the pain is just less severe. It hasnt done much for me...ive tried every med going like u but on propanolol and amitriptaline at the mo doesnt do much, then flurozine which u can only obtain from my london hospital as its not licensed here is being sent to me and the results in studies well bloody good so im hoping it helps. I have suffered for 23 years never had a pain free day. I have 31 injections too although its not that painful
I've had five courses of Botox, two of which I had to pay for. No other treatment has worked (I've been treated for chronic migraine by Queen Square for fifteen years) but the first two Botox treatments transformed my life: no pain at all for three months. The 32 injections are very minor things, nothing to fear. The full effect kicks in within a week or so.
However, the last three treatments have been far less effective: I have less pain than before I started Botox and would want to carry on with the jabs if I can get funding but the reduction in pain has been more uneven and I've had a dull background headache most days since the fifth treatment. My hunch is that it may depend upon how experienced and skilled the person injecting is: maybe some are better are targeting the nerves involved.
It's a while since I started having Botox. The first two lots of injections reduced my migraines and I was able to stop taking Topiramate. I went to my third appointment in December and was advised as my migraines had reduced so much I wouldn't be given the third dose!! (NICE guidelines) thank you NICE!
My migraines worsened again so in February I had another lot of injections with good effect. At my next appointment early this month (you guessed it) I was again refused the Botox. The NICE guidelines are being closely adhered to. I have emailed NICE as I feel it is unfair. I have found a treatment that is effective but now it am on a roller coaster with my migraines. It seems I have to wait until my migraines worsen and I fulfil the NICE criteria.
Thanks NICE! I understand we need guidelines but what happened to being treated as an individual? My understanding is that guidelines are just that GUIDELINES! It's not the law! Grrrrrr
I don't have NICE guidelines in my location, but that sounds like a billing catch-22. It isn't about the actual guidelines themselves, but that they're used too strictly to determine coverage eligibility. It goes against all common sense to stop a treatment for being too effective & have to wait for symptoms to return again - knowing they will - just to continue it. This post is old, so I hope you realized the obvious solution... but for the sake of others, if you know guidelines like this will prevent your doctor from continuing the treatment they want to give, because you fall short of having x number of events - SAY you had x number of events. Your doctor will know exactly what you're doing (which is actually a good thing), but it still unties their hands. You can even bring in a 'log' of the symptomatic days to have put in your record. Fighting to fix a flaw in a system is noble, but not really in your best interest.
Had boxtox (31) nearly 3 weeks ago , just about stopped feeling like there was a giant elastic band round my head, but my teeth still ache from a tense jaw. What I am noticing is that the symptoms are being suppressed not stopped, problems with speech, writing, cognition are still happening but I don't notice until I can't do something. has anyone else had this?
I'm getting the botox injections this Thursday 21st of April 2016 and I was wondering do I get all 32 injections in one day or over a period of days they never said in the letter how long it take I'm a suffer of chronic neck pain and chronic migraines have been since I was 11 I have gone through soo many tablets in my life it's hard to name them all need quick reply ASAP thanks
Hi Eamon...yip all at the same time. I had 33 injections twice over 8mths. I felt relief in my neck after a few hrs but it didn't help my migraine frequency or intensity but that was down to being misdiagnosed with migraine condition which turned out to be a jaw problem . Botox gets great results and you barely feel it 😀.
I sure as hell felt it my goodness the pain was awful I nearly passed out they gave me 31 injections im to go back in another 3 months for another 31 injections im still getting severe pain in my neck and having very bad migraines
Awe noooo 😭 i honestly was chatting all the way through, i felt tiny little stings nothing major. The relief in my neck was almost instant. I'm sorry you had such a bad experience 😭
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