I'm trying out Amitrpryline 10mg and have been told to double my dose within 2 weeks if there's no change. As I'm always in hospital I've been told to see a neurologist- and began this treatment while I await my appointment as they start you on this treatment anyway. (I've been using sumatriptan the last couple of years- thanks to a doc in one of my hospital visits- as painkillers do not work. I used to go through boxes weekly)
My migraines are very severe where they leave me in a kind of disabled state- eg my recrnt trip this happened to control the pain - I'm given gas and air in the ambulance (no pain change but the high relaxed my body slightly) and my blood pressure was 88 so had to be constantly monitored. (They have to turn of the lights for me too) I was injected with 'a strong form of ibruprophen' then placed on a drip where a huge dose of paracetamol was pumped through, then saline bag as my body was severly dehydrated (this always happens) then anti sickness Cyclozone but it burned through my veins and made my heart palpate - ( because i vomit severly beforehand to the point where i only vomit up stomach acids) then I was injected again as the pain only subsided enough for me to finally talk. My blood pressure did not rise so eventually they gave me a sandwich to eat and sweet tea to try bring it up. After all this, four hours my bp was 94. And doc wanted to put me on another saline bag due to how dehydrated I was.
This is how bad they get. I've had them since I was 9.
I'm sure you all understand this invisible disease doesn't let me lead a normal life and want to be able to control them as much as possible, because im always at the hospital! so am considering Botox to control the less severe ones? As I get all types.
So I'm hoping the 'less' severe ones won't leave me bed bound at home with Botox?
I've just read a thread where it's made them worse??? Please explain and were yours as severe as mine? Less severe? More?
Any good reviews from anyone?
kindly give me examples of ur migraines too so I get an all round idea of whats best to do
Thank you
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MigraineVictim
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I am so sorry that you are suffering so much. Migraine is just truly awful, isn't it?!
You ask if anyone has had good experiences from Botox and I have to say, that I definitely have! I am in my 50's now and have had migraines since the age of 4.
As you can imagine, I have exhausted all other treatments. I either have a bad reaction to medications or they make my migraines worse. I have tried just about anything anybody could ever suggest, including alternative treatments.
During my 40's, my migraines started to become a daily thing. I was absolutely desperate. In the Migraine Trust newsletter, I saw an advert for a medical trial. I was accepted onto the trial and the trial was for Botox injections (although initially it could have been a placebo). It turned out, that I was always on the Botox, never on the placebo.
For me, the Botox has been a compound effect. The more treatments I have, the less severe the migraines are. This took a short time. What did take a long time, was the decrease in frequency. But about 7 years on, I am now no longer considered a chronic sufferer (to be a chronic sufferer, you have to have more than 15 migraines a month). This is great, as I was in the top percentile of sufferers. Somewhere I would rather not be, as I am sure you can imagine.
After the trial, for about 6 months, I was taken off the Botox before any other funding could be available. Did I know it!! The migraines came back thick and fast and I knew that I could not return to that life of daily migraines.
I was then put back on it. Besides living my life in so much less pain, I can actually plan things! Holidays, evenings out etc, etc. I do still get migraines but on my score chart, of 1 being the lowest and 10 the highest, they are all usually a 1 now. Before the Botox, they were all 10. I have also only been sick 3 times, since being on the Botox. It was a regular thing before.
I still take Triptains but I am no longer living on them. I also have decreased my dose of 40mg of Eletriptan to 20mg. Less side effects!
Things I have learnt over the years: Don't skip meals, if you feel sick, try and eat something quick. It can often overt the sickness. Parcetamol makes my head 10 times worse! Hormones have a lot to answer for!! Oh, and I've learnt not to try and hit people, when they suggest that maybe, stress, coffee or chocolate might be causing my migraines!! And, most of all, get a good neurologist (they can really vary), one that believes you! Mine is fantastic. Took me years to get to a good one though.
I hope that my positive results from Botox help you in your decision MV! Good luck with it all. I will be thinking of you.
Oh wow it's wonderful to read and will definately put myself forward for Botox. I don't understand how it could make migraines worse but I am willing to test it out. Especially after reading your story its uplifting. I think mine are getting sloghtly worse and definatly more frequent as i get older too.
I'm currently on amitriptaline 10mg and nearly two weeks in, the last week I've had a migraine daily taking sumatriptan every day to keep it at bay while still being bed bound half the day... I think it's making it worse but will give it a month just Incase it's hormonal (time of the month) - however even still I have a feeling this doesn't bode well. I'm on more sumatriptan than usual although sometimes this happens so maybe it's not the amitriptaline.
I hope I get treatment sooner rather than later! Thank you!
You are welcome. Please let me know how you get on. I hope that it is a huge success for you!!
One other thing, whilst I think of it and you may already do this but it is hugely important to keep a migraine diary. Chart and score you migraines and periods too. What medications you take etc, etc. I know it sounds like a chore, especially when you don't feel well but it is the first thing that a neurologist will ask you to do and if you already have that info when you see them, they you don't have to wait another 3 months plus, whilst you go away and keep a diary, if you see what I mean. You may also just spot a link yourself. You never know. I've kept one for years and years now and now I am at the stage, where I quite like looking at it, as my migraines have decreased so much.
So sorry to hear how much you are suffering. I know it's not any consolidation but I guess a lot of people on this forum know just how you are feeling and desperately horrible it is.
Thank you I will! Brilliant, it's comforting to hear and take on board it really has lifted my spirit I will keep posted hopefully the wait isn't too long for Botox!
Firstly, I have been reading this column for awhile now & feel terrible for you all.
I am 54 years old & have been having migraines since 13 years old. I have always surmised that they were hormonal mostly since In the beginning it was during the week of my period...
As a kid aspirins did not work so I took Excedrin PM & slept it off. Then I graduated to fiorinol After years on that I started getting rebound migraines,,, A few neurologists later when they came out with the imitrex injection I was in seventh heaven.
Then zomig... a miracle... It was the best!!!
I have tried chiropractors & acupuncture, holistic remedies, vitamins, staying away from certain foods & drink & many other things along the way, to no avail.
Through the years the migraines have gotten stronger & more frequent. Once a few years ago I had a 3 week one, A friend who also suffers recommended a cocktail (mixing zomig & fiorocet) For a while that worked.
I just started menopause & have migraines very erraticly. I also have been contemplating botox. I would like to ask how often do you do the botox & how many areas do they inject during each procedure?
I've got a docs app next week and will demand a Botox referral! I think you should do the same- I've been bed kind for two weeks trying out amitriptaline-- if the Botox does the same (which I doubt) then I won't be left wondering anymore!
Hi, I am so sorry not to have replied before! I have been away for a few days.
You sound very much like me 000000. We are nearly the same age but I am still waiting to start the menopause. For me, it can't come soon enough. It is what cured my Grannie's migraines.
Just to let you know, that I have about 37 injections of Botox every 12 weeks. They are only really painful, if I have a migraine or one lurking. Otherwise, they are not so bad and of course, anything is better than a migraine!
The areas that they inject (and I must apologise, as I don't know the scientific names for the areas) are across the forehead, in the temples, around the back of the head, and into the shoulder and a few just into the back area. It is worth wearing a very loose fitting shirt!
I join you in your wish to make everyone migraine free!!
Please do let me know, if there is anything else you need to know about the injections. I will try my best to answer them.
I've been having botox for about 3 years. I have it for chronic pain in my face, shoulder and arm, but as I also have migraines it has a positive knock-on effect on those.
It hasn't got rid of them completely - I've had a couple in the past 10 days. But the good news is that the pain / headache associated with the migraine is a lot less. So although I get all the other symptoms (I get migraine with aura) and that's not a lot of fun, feeling weird, the headaches are so dull and brief that I sometimes don't need any pain killers, or only need a couple of ibuprofen and they're gone. Occasionally I do get massive headaches, but all in all it has been a lot better than life before botox. In fact, I do now have a life.
Good luck.
Hi there,
Wow - I am so happy that so many of you have had luck from botox! I am somewhat on the fence about it for me. I am in Canada and was seeing a neurologist who was able to give me free samples of botox due to her position at at university hospital. She started by giving me half vials, all the way up to giving me two vials on both sides of my head, and I never had any effect from it. I was extremely lucky to have not had to pay for the treatment, because at this time it was not regulated for migraine use.
I now see another neurologist who's job is more targeted at migraines and he is able to help me with nerve blocks. I need them every 3-4 weeks, but they make my chronic daily migraines much less severe (I would be vomiting and dying in pain, having to go to the ER for narcotics with out them). I somehow wonder if the botox injections had been targeted at the same places it would have helped... however, obviously the nerve blocks work on the nerves, not the muscle.
I really hope that botox works for you - it would be a very simple, non-side effect form of relief.
Just been reading everyone's posts and at last I don't feel so alone. I'm 24 and have been suffering from chronic migraine for 13-14 years now. It's is ruining my life and I'm really struggling with day to day activities. I've been seeing my neurologist for about a year now and we have tried every drug you can imagine. Either they did not work or caused side affects. I'm due in London on the 12 th of this month for botox injections. I really hope that it works. This might sound abit steep but it's got so bad iv had thoughts about what it would be like to not be here no more. Then I feel terrible as I have a 2 year old baby girl. I'm currently off all pain killers as I have suspected medication overuse. All I'm allowed to take is 400 mg ibuprofen and sumatriptan. I'm also currently writing a headache diary. I hope everyone gets their migrains sorted as it feels like a lonely place when no one understands what your going through.
I don't ever think they can be sorted, but ppl here seem to gain some level of relief from them. That's what my aim is.
Also, it's a good thing to be off all painkillers- I felt a sense of relief after using only sumatriptan- because painkillers in the amount I was taking- and you too with the suspected medication overuse/ they create headaches - rebound headaches which in effect trigger migraines yet again so it's a vicious cycle. Things will be lighter when your out of that, then it's a new path to find a sense of relief from them and cutting them DOWN .
Hi. Just read your message and i feel exactly the same as you! Just wondering if the botox worked for you? I have an appt for botox for first time next week and am quite anxious! This message was for katemarie!
I have had 2 lots of botox now for my migrains. So I'll start from the first time. I was anxious and nervous on the day. When I was traveling to London on the train I felt so sick due to the anxiety. I'm terrified of needles. I had come off the meds for a month as requested by my neurologist and my migraines and not got any better so I don't think I was over using the pain killers but anyway I went into the treatment room at the hospital and sat down, had my mum there. I had 39 shots altogether in my head and neck. I won't lie they really hurt me and I did have a few tears but I think. It was a mix of pain and anxiety that triggered the tears. But it was over within ten minutes. I had an instant migraine after the treatment but I took a 100 mg of sumatriptan and when I got home whet to bed. My neurologist told me that a lot of people who have the first Botox treatment get a really bad spell of migraines until the next ones are due so I was not looking forward to that. To my surprise and pleasure I think I had 4 migraines in 3 months after the treatment and I felt like I had finally got my life back. It worked absolute wonders. I was so happy. My next appointment I was still very anxious and nervous but I knew that ten minutes of pain would stop 3 months of agony and misery. I told my neurologist that the Botox worked wonders and he agreed that this was the right thing to treat my migraines as it was so successful and life changing. So I got back in the chair to get my next lot. I told my neurologist that the most painful injections were the ones in the back of my head so he said he would not put as many in that area so I had a total of 30 injections more in the front of my head and neck. Was a lot easier this time and I handled the pain a lot better. Unfortunately I have had more migraines than last time and I can only think it's because I didn't have the same amount in the back of my head. Next time I shall be having the full whack again. I think it's a miracle drug and it has changed my life. I can now go to work without calling in sick, spend time with my fiancée and daughter and go on days out and generally just do what I want when I want. I can't say don't be anxious as it won't help but I will say just be brave and if your like me it's so worth it. Sorry to go on but just wanted to tell you my whole experience. I'm due back again in January for my 3 rd lot of Botox. Where a bouts are you having your treatment. I hope I have helped.
Hi Katemarie your treatment sounds wonderful... I have been frightened of the possibility of my migraines getting worse due to the treatment so have held it off- but after all these years and hearing yours is a success I'm going to ask for a referral. Could you tell me what centre/who you went to? The doctor/practitioner specifically?
I was so worried my migraines were going to get worse but the only bad one I had was straight after the injections. Well worth it tho. It changed my life. My neurologist is Dr chong. I go to the green Elizabeth hospital in London
Hi there. Thanks for your great reply and i really appreciate all the details. I feel so desperate now that I am actually looking forward to the botox next week! I am not scared of needles and am used to acupuncture - not sure if that's similar at all? I live in sweden and am getting the treatment here, although I am from the UK (Swedish husband ). Does your forehead feel numb or tight and does it look different? Do people notice? Thanks for your encouragement
You will be absolutely fine then Hun. Be a doddle for you. I hope it is as successful for you as it was for me. When I get the botox the injection areas are sore for a couple of days but nothing major. After a few days the muscles in my forehead are froze but not noticeable froze. I used to be able to lift both eyebrows up but now I can't. There is no visible signs of botox and no one would be the wiser that you have had it done. Does feel strange not able to move my forehead but you get used to it. Let me know how you get on. You will be absolutely fine. My botox is every 3 months but during the last couple of weeks I know it's wearing off as the headaches become more frequent so make sure your neurologist is on top of your appointments. X
Great - thanks for this. Your words have meant alot to me and given me the confidence i need. I will be in touch after my appt which is next wed. Fingers and toes crossed
Your more than welcome, I'm glad iv made you feel a bit better. It's a lonely place for a migrain sufferer and means a lot to know there is support and other people out there that know what your going through.
Hi katemarie. I survived the botox yesterday! Yes it brought tears to my eyes, especially the ones at the back of my head, but it didn't take too long thank god! I felt a bit odd with dull headache before and after the botox and bit better today although still a bit of a "fuzzy" head . So fingers crossed and i will keep you updated. The frozen forehead hasn't set in yet ....
So pleased you got through it without too much pain. I can relate to the ones in the back of the head. They really hurt and still hurt for a few days after. I really hope you find that the botox has worked as well as it did for me. How are you feeling now? I'm due for my 3rd lot in January and I'm still just as scared. Do you take any meds as well as the botox for your migrains?
Hi there. I am doing quite well thanks apart from a headache on friday. Otherwise feel better than i have done for a while. Have also been off work a few days so that might help as well. The medication i take is zomig nasal spray - the only thing that works well for me, and I have tried everything!! Only prob is that i over use zomig - i take it 8-10 times a month which is almost overdoing it - may be that i get rebound headaches because of it - who knows! Anyway fingers crossed now that the botox does its job well now :). I will keep you posted!
An update on my status - got the botox exactly 2 wks ago and have almost had daily headaches ever since so depressing! I was really hoping it would help me but it dosent look hopeful. Or does anyone have any experience of it being bad initially after the botox and then a positive change after 2 wks? My doc said 2 wks before i would see a change, but he never said I would get worse befor better any advice anyone ? It's so bad now i am off work for a few weeks.
Katemarie, I just want you to know your not alone. I joke to everyone around me to make sure they lock up all sharp objects because when your migraining for days for me anyway it has popped into my head that I can't take the pain anylonger. However, like you I have kids and in my right mind would never hurt myself. You are definitely not alone.
I started to receive Botox injections for my Cluster Headache/chronic migraines (which I would get daily for 3-7 days, usually twice a month) back in the summer of 2013. It is 32 injections in the forehead, scalp, shoulders and neck. Not the most comfortable thing in the world, but compared to the headaches, it was like picking daisies. The doses are generally given every 3 months. The first set of shots were *wildly* successful for me, beyond even the doctor's expectations; I could feel the headaches trying to happen at their "usual" time, but it felt like...I don't know, things wouldn't expand or flow to turn it into a full blown attack. Additionally, I did not suffer the photophobia or auras. I would occasionally still get the headache pain, but it was manageable and often resolved with merely excedrin migraine (a first for me!). Seeing as 100 mgs of Sumatriptan, handfuls of Vicodin and every other med under the sun had done very little to manage the headaches (and often made them worse due to the stress of the various side effects, rebound headaches, fogginess, etc...), this was an absolute miracle to me. I dared to think I could finally get my life back and start actually making plans again, rather than be in this perpetual , debilitated maintenance mode of existence. I started thinking clearly for what felt like the first time in ages. Toward the end of the 3 months, the headaches got a little worse and by the time I was due for my second set of shots, I had a full blown clusterheache (though still not experiencing the auras and photophobia like I used to), so I was anxious to get my second treatment and went into the doctor with a rapidly worsening headache to get my shots.
MISTAKE.
Much in the way they don't quite know what causes clusters and migraines, they aren't sure how Botox works on them and it is still a relatively new treatment. When I got the shots, they felt different than the first time (i.e., hurt a lot more, there was some bleeding) and when I left the headache kept getting worse. Then it continued, for days. The best I can figure is that if the paralytic effect of Botox on certain nerves and associated muscles can shut down the migraine response, it's quite possible that getting the shots while I was in a full blown attack sort of left me in an "ON" position, so that there was potentially even few barriers to whatever triggers the conditions. After suffering for days with the headaches and accompanying symptoms, I asked my neurologist if this could have happened. She gave me "I don't *think* so", but basically she couldn't definitely say and another neurologist I consulted with said my theory could indeed be what was happening. I could find no studies that were specific to a person receiving the injections while suffering a full blown attack and seeing as how I had such success with the first round of shots, I basically have resigned myself to dealing with daily headaches of moderate to acute severity until mid December, when the last dose is due to wear off and I'm scheduled for another round. Because of the life altering success of my first round of shots, I'm going to continue with them, but I highly recommend to anybody interested in receiving Botox therapy, DO NOT GET THE SHOTS WHILST IN THE MIDDLE OF A HEADACHE EPISODE. The doctor will probably say it doesn't make a difference, but the truth is, how can they even know that when THEY don't even know how it works? I will update my (what is hopefully) progress after the next round of shots, because if they have the same success as they did the first time round for me, they may be of great benefit to other cluster headache and chronic migraine sufferers (and one that doesn't come with all the wonderful side effects and rebound headaches that every pharmacological treatment I have tried ).
I have botox for chronic pain in my shoulder and head, so if my pain is a problem the injections hurt and I'm more prone to things being worse before they get better. I imagine it's like stubbing your toe (the chronic pain) and then smashing it with a hammer on purpose (the injections). Some injection sites are sore - these are the places that trigger my pain. Others don't hurt much at all. I dare not cancel the appointments though if I do have pain or a migraine as getting one in the first place is a right battle.
On the other hand, I've had migraine aura shortly after having the injections and had no way of telling this was going to happen. If I am well then it's all a walk in the park.
I guess it's personal choice as to whether you go ahead and have them in the midst of an attack, and a good idea to be forwarned about any possible problems.
But good luck to anyone who is due to get theirs done soon. I would rather have botox than acupuncture or a nerve block (have also tried those). It is less unpleasant than giving blood or having a local anaesthetic at the dentists. Just close your eyes, take some deep breaths and relax.
Vera, Thanks for all of your very helpful info on Botox injections. I found it very interesting that you had a very bad experience after receiving your shots during a migraine!!!!
I am over in the U.S. searching the web for as much info like this as I can, as Botox injection we recently approved over hear. I have recently received my 3rd round of Botox injections so I would like to share my experiences with any or all of you. I have suffered from Migraine for over 25 years now and have tried or been on just about every medicine out there. I have also tried Chiropractors, Acupuncture and physical therapy to no avail. I have full blown migraines 3 to 4 time a week but manage them thru medicine. In the past few years I have had to bump up to Narcotics to manage the because of the high dosage of “Over the counter” stuff (aspirin, Tylenol ect..). I am not bothered by light or sound on 95 of my migraines thank god! My most severe episodes I do end up getting sick and going to the ER for the usual Narcotic shot or shots. My Doc has kept me on my daily meds for the time being.
My Botox shots are given every 3 months. Yes they hurt but I have a high threshold for pain. I get a total of 41 shots each time- starting at the temple and going across the forehead to the other temple. Then up the top of my neck starting at the shoulder level and going up almost to the base of the skull and back down.
Botox Shot Results:
Round 1- January 2014
Right after I had a little stiffness in my neck and shoulders that lasted about a week. I also had a mix of headaches and Migraines for 8 to 10 days which was above normal for me. After that no neck or shoulder pain and 2 migraines for next 2 ½ months. About 8 days shy of next round of shots headaches were starting to come back.
Round 2- April 2014-
MIRICALE! No neck or shoulder pain! NO Migraines or headaches for 3 months!!!!!!!
Note: I could tell/sense when a migraine was “Trying” to happen but never did! Odd sensation!
Round 3- July 2014
DISASTER!!! Like Vera S I went in for this round of shots with a Migraine in progress. Not knowing better, I got my 3rd round of shots with a pain level at 4 out of 10 with meds. I have had non-stop headaches and migraines since! I have been on Prednisone to “TRY” and break up a “Cluster” which worked while I was taking it. Later I went to the hospital to have 3 day of IV fed DHE to try and abort the clusters. That helped but still getting my Migraines like normal, 3 to 4 a week and headaches every day. The bad part is my prescription narcotics are barely keeping them at bay and now I feel like a zombie! Worst news yet, my insurance company will no longer cover my Botox! OUCH $$$$
Note- none of my meds have been known to interfere with Botox.
Vera S and others my Doc has told me she has had huge success with Botox and has been doing this for over 3 years now and has had only 1 other case like this. She had no explanation why? I think this is a very feasible possibility. I am due for a follow up shortly and I will definitely discuss this with her. She is the best Neurologist I have had in 25 years!
I'm having my second round of botox in the morning. Has anyone any advice on how to deal with neck pain, last time I was in agony for about two weeks, only side effect I got was a sore stiff neck and shoulders. My forehead did feel frozen and my eyebrows were very arched but looked good. I got my first botox 20 weeks ago and after about 10 week's I could feel it wearing off. Has anybody noticed much difference in your headaches if you wait longer than the 12 weeks for your botox?
I have been getting headaches since I was 17 I'm 24 now and still havnt found anything that works fir me. It is frustrating trying to find relief, Im hoping this time the botox will work quicker and for longer.
To anyone suffering at the moment try lying down with a damp cloth over your head. Another thing I found works is Vicks vapourub put it on your forehead and it will soothe the head while also making you mire relaxed.
tazdis, for the neck pain i asked my dr for lidocaine gel to rub on sore areas. helps a lot and really inexpensive. Botox makes me feel bad too. stiff neck and everything. if you relax as much as you can during the botox session, it wont leave you as sore. Deep breaths and letting the dr know you need a chance to relax in between the little injections will help immediately and in the long run.
I can understand your plight. I had hemiplegic migraines since I was a teenager that was my first migraine. As I got older I just got more and more types of migraines, I knew the day before when the weather was going to change (barometric changes) so I suffered the day before and the days of the bad weather; I am 47 and in my 40's I got cluster migraines 5 days or more unbreakable migraines. Personally I cant tolerate the vomiting, I took under the tongue disolving Zofran for the nausea it is a life saver. I used Botox for about 2 years, injections by a board certified Neurologist every three months, it takes about 7-10 days to take full effect and it did help cut down some of my migraines. With my hemiplegic migraines I cannot take sumatriptans (the wonder drug) so I found everything under the sun to help me with mine.
I have read that using Botox for too long can cause muscle weakness and temple hourglass syndrome (sometimes people dont realize they have this) which led me to other alternatives.
I definitely recommend Botox for migraines as well as nerve blocks that provide immediate relief without the side effects on the rest of the body.
I have had the same migraine everyday/minute/hour/second for the past three years. I've seen many neurologists and many doctors about this. I have been on botox injections for 2 years now and i am glad i get them. it cuts down my pain by 3-5 points and i have high pain levels only 3 or so days a week bc of the botox. much better than a level 8-10 everyday. if you can get botox, do it. it might take 3 rounds to work but at least see if it makes a difference.
Wow, so much suffering, I’m so sorry all of you have this huge challenge of living with migraines. Me too, unfortunately. But it is nice to see I am not so alone.
I have a rather demanding, responsible job, which was hard-won, and I started it ten months ago. So I had the most desperate year, trying to appear well enough to keep this job which I wanted for so long. I was using too much of one med, which is Indomethacin (suppositories). So to stop over-doing it with the almost daily Indomethacin, I finally tried Botox. (Against the advice of a holistic doctor, an herbalist friend, an acupuncturist; a pessimistic husband. Thats why I waited so long).
The injections were really painful, felt like very slow, sustained wasp stings, esp. in the back of my neck, as others here have said. I wish I had come here, first! I would have been more mentally prepared. And I was also nauseated afterward.
The Botox gave me minor relief from the migraines only for three weeks, during the first three weeks I had two break-through migraines. It felt like I was wearing a tight hat over the migraines and I could feel the headaches trying to push out, but they were held in. Then the daily migraines returned, as extreme as ever. I had been so sure Botox would be the solution I needed, the disappointment was really crushingly hard to deal with. But the worst part was the neck pain. The first two days after the injections my neck was achy, but the third day I had shooting pains down the left side of my neck and back. I am really very sorry to say that I still have them, 15 weeks later. They gradually improved, and now they come and go, but are really excruciating and intense, lasting 12 hours at a time. The doctor said the Botox must have weakened some muscles which caused stress on other muscles, and so caused some instability that caused misalignment. I’m doing Physical Therapy, without results yet.
Meanwhile, the migraines were so bad I had to go back to the daily use of Indomethacin. Now I have stopped that, eight days ago. I am taking a vacation from work to try to get better without the Indomethacin. And I am getting better! This is the eighth day in a row without the Indomethacin, and now, finally, three days in a row without a headache! So I guess I was getting rebound migraines.
For anyone whose migraines are not so frequent as mine, I really recommend the Indomethacin. I could not have any career without it. And I have not seen any one else mention it here. It’s a very powerful anti-inflamatory.
None of the triptan drugs helped lessen the migraines for me, and Imitrix caused problems with severe dizziness. And Amitrpryline only made me feel sleepy and slow-witted. Fiorecet did nothing. The beta-blocker Propranolol did help for several years, then I suddenly became intolerant and had extreme side effects (scary memory loss and fainting). I stopped it several years ago, but now my doctor has persuaded me to try it again at a lower dose. Maybe it’s helping?
I could relate to what Katemarie wrote about just wishing not to exist sometimes. When the pain is at its most intense, and its gone on for hours and hours, I just think it would be such a relief to not BE anymore. But it does make me very sad to think that way, and I would never leave my husband like that. I still have a lot to live for!
And I really loved reading welltodaygirl’s comment that she had learned to try and not hit people when they suggested it was stress or chocolate!!! Yes, I have had that urge with my relatives! And how many of you are tired of hearing people say “You just need to stay hydrated”?
Acupuncture has helped me, but only with certain talented acupuncturists. I’ve seen six different acu. practitioners and only two have helped. Chiroprators made the migraines frighteningly worse. I keep a very careful diet. Sleeping on schedule is important.
I just wish my neck would heal. I am going to ask my doctor for the lydocaine gel, as above, thanks grayterisk, that sounded helpful. Does anyone have any advice for me?
It is really great that Botox has brought relief for many of you! I wish they understood how it works, so maybe they could improve the results.
It is recommended to seek advice of a qualified doctor before undergoing botox treatment for migraine. Me and my cousin had migraine issues and our doctor suggested botox treatment. We got the treatment from different practitioners. I asked about the qualification of the practitioner and found he did the botox training from a recognized institute , aesthetic advancements, Canada . He was an expert practicing for several years. The treatment was painful but did well. And the result was very good as well. For four months my migraine issues was very much manageable after that the process had to be repeated as said at the start of the treatment. But my cousin had some trouble for the months following the treatment. She is not sure about the practitioners qualification. It is very important the person who does the treatment does his training course from a good institute.
I tried Botox just in the forehead at the London Migraine Surgery. It had absolutely no effect on my headaches - but it did get rid of a couple of wrinkles for three months or so. I can't try what the UK health service (NHS) offers because I'm too old. I get the impression that it cannot be approved for use with people over the age of 65 because there wouldn't be enough profit in it for the pharmaceutical companies who are consequently not prepared to test in on older people. Ageism!
my contribution to this discussion ; I had to seek private help @ the migraine surgery clinic in London ( for the botox toxin test ) in order to prove to nhs that indeed, firstly I did have migraine !! its took me a long long time & a lot of money ( that I really didn't have, after a cocktail of horrific meds, that left me addicted @ 57 years old I was forced to check into a detox centre...after being told I couldn't do it at home ( although the nhs website tells me otherwise, ( what a nightmare...I was put into a mad house with kids & teens running wild, I was attacked, stolen from, ( at this point I hadn't researched the fact that it was migraine ) what a terrible time I had, my partner had to come & pick me up..so I snook out & RAN...I finished my detox from all the mad drugs myself, in my own bed ( without any medical care ) it was a terrible time that's why I took matters into my own hands & decided to do my own research , which led me eventually down to London ( the best thing ive ever done..now im believed !!! I got my first lot of botox back in june..2nd lot due sept 15th..they do help, but I still have to take 1 triptan a day...the only down side is that botox peaks & of course dips, before the 3 months, so in a bit of pain right now..i get 30 injections, nice guildlines are 31...its a case of knowing yourself where you need them,, so on the 15th I will be telling them where I need them & not just sitting there & letting them put them anywhere...( I only get migraine in the right side of my face, but they have to inject both sides, so my neurologist tells me ( shame haha ) ide rather have a few on the left ( just to keep the face straight ) & MORE on the right...but just grateful ive got this far...ide never take crazy meds again...I was so ill with them, but hey everyone is different, Good Luck everyone x
Hi everyone, first of all I would like to express my sympathies and empathies for everyone who has posted so far, your messages have given me some comfort in that I'm not alone.
My problem is that I do not have a regular migraine. I have constant chronic pain, there is never any relief, it is 24/7 and usually sits at around an 8-9 on the pain scale but more and more often will hit a 10.
It does, of course, bring it's good friends along, nausea, vomiting, light and sound sensitivity and disturbed balance and equilibrium. I also get muscle weakness and numbness as well as loss of sight. These latter problems come and go.
I have tried every pain medication under the sun, plus several standard and non-standard drug remedies. I have tried aromatherapy, acupuncture, relaxation therapies and hypnotism. I've kept a diary to try and identify patterns, avoided certain food and drinks and attempted to learn patterns of behaviour that could 'head off' the worst of the pain. Nothing has helped.
More recently I had a couple rounds of GON blocks (General Occipital Nerve blocks) this helped with the pain but made me so sick and dizzy that I couldn't even lift my head off my pillow.
My neurologist has recently suggested trying botox injections which is how I found this site. (Doing research)
I'm really happy for those of you who have had success and it gives me hope that this has worked for you. However, I cannot find a single case where the migraine is constant. Everyone mentions how long a particular migraine lasts but there are no examples where the pain never stops.
Please please please, if someone has tried the botox injections on similar pain patterns I would really appreciate learning the result.
I have no quality of life right now, I can't work, I can't leave the house, I can't even do housework without having to stop every 5 mins and go lie down for an hour.
I need an end to this, I can see that some of you have reached the end of your tolerance and contemplated distressing actions. I am rapidly approaching the end of my tolerance. I have been living like this for 18 months now. I need a solution or at least the hope of one.
I'm extremely nervous about the botox, but I will try absolutely anything to get better at this point.
Dear Kat, I had 200 days of migraine non stop last year before I had a day off from it. It was a mess. Since then up and down, but I have tried 2 rounds of botox now and in the first three months I had 25 migraine free days out of 30. The month of May this year. So if you are eligible for them, try it. It can take 6 months to work but I think you should try it if the doctors are willing. My case was started by severe viral meningitis so I knew what the precipitating factor was. Still made it hard to live with and am currently about to stop working my second job to have more time to rest. I should be stopping both but I cant afford it really. Last year during the worst of it I had 5 jobs in a row I had to quit because the migraines made it untenable. This year is better, sort of. Anyway, I want to give you some hope that your situation might change. Last year it seemed like this was it for me. But its improved. So you may well too. One of the thing you can rely on in life, is that things never stay the same. They always alter, even after many years, so your life will change too. I want to wish you godspeed to recovery and let you know you are not alone.
This sounds terrible - I really feel for you - I guess triptans don't work? They are the only drug (plus gabapentin 500mg) that works for me. I have to take them everyday or I would be the same as you. I have wondered about cranial physiotherapy - have you considered this? Did something happen 18 months ago to start your migraines? Mine started the minute I reached 50 - so hormonal. HRT is an option. I am considering botox but can't risk it making them worse - would lose my income which supports the whole family. I am really hoping something works for you. If I win the lottery I will spend it on chronic migraine research for all the sufferers and would come calling!
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I will keep posted hopefully the wait isn't too long for Botox!
so depressing! I was really hoping it would help me but it dosent look hopeful. Or does anyone have any experience of it being bad initially after the botox and then a positive change after 2 wks? My doc said 2 wks before i would see a change, but he never said I would get worse befor better 
Has anyone had worse/more frequent migraines after the flu jab?
Has anyone had an increase in migraines after getting the flu shot?
Nerve block yesterday.. my experience and can you tell me yours please?
