General BOTOX discussion board

I totally agree with that..I am beginning to LOVE this man.
xxx

Sarah has finally finshed her Botox article - and here it is

Good piece to raise awareness...nice one Tracey (40), Kent.

Well, I have had my second round of Botox and have to say this time was not as dramatic as the last lol - They did however give me something to calm me down (2 pills in fact lol)

The injections in the side of my head and shoulders where fine. The neck a bit more painful and sadly the ones in my forehead where ouch ouch ouch (Ok I did say it a bit stronger than that as they went it lol) The doctor was great, in fact all the staff where amazing, but he explained that I find the forehead ones more painful as that is where my main pain centre is - he thinks its not the actual injections but that when the needle goes in it kicks of the nerves and the pain.

I came home and slept sound for 14 hours and have woke a little sore but no pain It feels tight, but not the cardboard under skin feeling I had last time.

They are getting a mixed response, some have had no effect at all and some get great results - I was told that one man had gone from 30 days of pain per month to 3

They really are working hard to get this approved for everyone and I have all my fingers crossed they will succeed - we should know the outcome early next year.

I am down for the next lot in December / January - but I may have to go private for this round. But from the results I am getting it a small price to pay

In my view, Botox has been found to have an effect for some people and can help to reduce the levels of pain of the migraine. Independent studies have shown that it may reduce pain by around 20%. It is worth noting however, that Botox is only licensed for chronic migraine and a full protocol usually involves around 31 injections. This is quite a lot of injections, but after three courses, results should soon be seen.

The downside of using Botox as a migraine treatment though, is that it has to be topped up every 3-4 months. In my opinion, Botox should be reserved for people who don’t respond to other migraine management techniques first.

The placement of Botox can cause short term problems similar to cosmetic Botox however there is no evidence to suggest there are any long term consequences of using Botox as a migraine treatment.

Thanks for that, I had my review today and we are going to give it another month - to play this round out fully - I am still at a reduced pain rate, so until that increases we will not know how long I get relief for............ if its 4 mths then that means I can have one less set of injections per year

I have had the 31 injections and its not fun..... but I do think it should be tried by all chronic migraines, as the side effects are limited - having gone through most of the meds it is nice to have treatment which does not come with weigh gain, shakes, tiredness or confusion - let alone the suicide thoughts I appreciate it costs - but it has to be cheaper than admitting people to hospital for DHE.

Also, I was told that in some people you can get an accumulative effect - which means over time less injections

Hi Tee,

Yeah, the side effects of drugs are horrendous!! The Botox can have an accumulative effect, but if it doesn't work after 3 treatments it generally won't work. Although it's recommended the 31 injections are given each time, depending on the type of symptoms, sometimes I give more and sometimes I give less. Botox is never my go to treatment of choice.

You also forgot to mention how many people are admitted to A&E for migraines. It breaks my heart when patients get told they just have to put up with the pain

Mind if I ask how many courses of Botox you have had?

Not at all - I have had 2 rounds now. The first brought the pain and aura down alot and August was an amazing month. The second made me a worse before it got better.... which is not what we expected - but I am back to the August levels now, so we are going to let it run for a few more weeks to see what happens......

May I ask, do you suffer from fatigue also? Has this been investigated and what were you told? I always find this aspect is over looked by my medical colleagues

It's surprising to me that when patients come in to see me, they often have VERY similar symptoms but rarely have had similar investigations. Migraines are one of the most poorly funded aspects of research in the medical field. I'm working on something at the moment though.

Oh boy yes - at the start of all this I had fatigue then about 2 years ago I started with chronic fatigue - it is the reason I can come off a few drugs eg Flunarazine and Eplim........ at one stage I was sleeping 16+ hours a day............. However, since I started the Botox and have come off the drugs and added magnesium and zinc I have found my energy levels are a lot better, ok I am not yet back to normal, but things are a lot better.

I was only ever told it was part of the symptoms of migraine and then a side effect of the drugs..........

It is one of my bug bears - that migraine is the number one neurological condition in the UK, effecting 1 in 7 and costing over 6 billion on economy lost, yet it has one of the least funded research programmes......

Holy smoke that's a lot of medication!

Yes meds don't help with fatigue but it's not what causes it. On another thread I mentioned about the cycles of sleep. We need to hit phase III sleep in order to regenerate. There are micro disturbances which massively increase the frequency of migraines which occur in phase II sleep and STOP us getting into phase III. This means that we are sleeping, but not regenerating. That's why most migraineurs have fatigue. The side effects of drugs obviously don't help!! Drugs often get referred to as the zombie meds. The most powerful medications cause people to feel 'zoned out'. Horrible stuff!!

Indeed - when this first happened ie the very big one (5yrs ago now) I lost the ability to sleep - I could fall to sleep but not stay asleep, I was waking up all the time for a few seconds (enough to know I was awake) and then back I would fall - sometimes 20 times a night - it was a nightmare. Amitriptiline finally knocked me out enough to get some sleep, but as you say, I do not think it was the good sleep.... taken a long time, but I have come a long way in 5 yrs I now find I have to watch sleep and get between 7 - 9 hrs any more or any less and I am in trouble, also natural waking is so much better than when the alarm goes off.

well its been quite a few weeks - I saw my doc in London at the beginning of December and we decided to give the Botox a few more weeks to see what would happen and then go for another round poss in Feb.... or go to Gabapentin

However - the local docs thought I had caught a very slight infection few days before Xmas, which interestingly did not go into the full cold everyone around me was having, BUT OMG it triggered a nerve / sinus problem and I was in agony for 3 full days........ I was put on antibiotics which helped a little........ but it prompted a visit to a new private neruo and ended up with another MRI (which is fine) but what a whirl wind... I had the private scan done on the Wednesday and by Friday afternoon I was sat in a London NHS hospital with my consultant (he is soo good )... anyway he thinks it was not an infection but a nerve problem 2% of migrainers get my diary has gone from nice 3's to daily 7's+ in the 3 weeks........ so it was apparent I needed get the Botox done again.... then wow the private doc my NHS one works with could fit me in, so within 2 hrs I was pinned to the bed again....

He wanted to do 37 this time, but decided (after the tears) that 31 would be enough lol...... so I am now at that sore, cardboard under skin stage..... but pleased I did it, as the feeling in my cheek is now coming back.... of all the things I have tried Botox defo gets my thumbs ups..... I really do not like the needles.......... but 30mins of tears has got to be worth a few months of reduced pain and auara

NICE are reviewing Botox at the end of this month - if they give it the go ahead, then the NHS will not have any legal right to refuse it... although it still may take another 6mths ....

You know what? I agree with a LOT of that, and reducing sensory input is what I do. Botox is NOT the best method for this. Botox will attain an approximate 20% reduction in sensory input as our colleague has mentioned above, there are ways to reduce it by around 75-80%

Migraine is a disproportionate response to abnormal sensory modulation, this means the brain over reacts to something which is normal sensory input, but is perceived as worse than it actually is!

I know I'm a geek about this stuff, but I love it!

I'm doing 3 seminars later this year on pain management, I've invited a number of doctors and neurologists to come along

My sister has botox and it has eliminated her migraine completely (she only has it in 2 areas on her forehead I believe), though I have to say she didn't get them that frequently or badly. She pays privately as she can afford it!

I paid myself twice a few yrs ago, it reduced my pain slightly and cut the duration of the migraine attack down by about 4 hrs. I was told by my neurologist recently that as it didn't completely stop the attack he wouldn't recommend me for NHS treatment. I don't think they realise that for very chronic sufferers if the pain is reduced by 10-15% and the duration slightly, it still makes a huge difference.

Thank you so much for posting the info about the 31 entry points, I didn't realise that. Will speak to my neurologist again and explain I only had 2 sites injected on the forehead when I tried it. Only problem is I'm phoebic about needles and hate the pain that goes with it so 31 seems a lot and would really stress me out...possibly setting off a migraine attack!!

Hi Mesha - you kind of said what I was going to say lol............ the pattern has changed in the last few years. And I would have said if you had a response with just 2 injections then you should be a good candidate for the current pattern of 31. They are given in the forehead, side of head (front of ear), back of head, shoulders and neck and are small amounts going in each time.

It does sound a lot - but on a 'normal' person only takes about 15 - 20mins to do... I am however not good with needles... so they allow me little breaks when I say, but even then I only take about 30 mins. I have found the best way to do it is laid down with a small pillow under your head, so you have some give. They will if you ask also give something to help with the stress.... its defo something to ask your doc about again.

Pav - you are going to have to tell us what you are up to............ lol

Tee,

I'll let you know soon, hopefully it'll transform migraine management in the UK, the problem is getting someone to listen but my results have attained the attention of a few consultants who could open the door for me

That said, I've told Allergan (the makers of Botox) that 31 injections is not enough, they have missed a significantly important muscle in their protocol but it doesn't look like it's going to change anytime soon! I've been using Botox for years for migraines and headaches but 'had' to go on their course, I was gobsmaked when they missed one of the main muscles. The protocol should actually have 39 injections in my opinion

oh great!!! lol

This made me smile -

http://www.thestreet.com/story/11381260/1/ubs-6-specialty-pharma-picks-to-watch.htm

Proses the question - when was medication about making people better and not about making money............?

Hi Tee,

Thanks for the encouragement, I'm due to see my neurologist soon so will mention the botox again. Unfortunately, he's more stubborn than a mule so will take some convincing (one of these guys with no empathy whatsoever and thinks he knows it all....he knows a great deal but not everything as he believes!) So frustrating when you can't get the right person to work with.

take care...

Poppet you do know you are quite in your rights to ask to see someone else....... it took me a fews years to get to doctors I can work with (I have one GP and 3 consultants now).......... but I have now seen 6 consultants in total over the years

There is a list of hospitals and clinics under 'Useful Information'...

I had botox a few weeks ago again and have the cardboard under skin feeling and right eyelid is beginning to drop again - but I also have this odd sensation in my eye lid - its as if the eye lid is wet.......... its not my tear duck but under the eye lid..........anyone else have this?

btw its not painful just a odd feeling

Hi Tee,

It won't be the Botox near the tear duct, if it was you would have dry eyes as opposed to a wet sensation. Not quite sure what's causing that sensation! The good thing about Botox is that it'll wear off (including any side effects) in a few months. The drooping eyelid is the Boyox shifting and affecting your eyelid

Allergan have asked me to reach the Botox protocol alongside my other philosophies to other professionals including doctors and neurologists, but I promise I won't teach them the additional 8 injections! Just the PREEMPT protocol as it is!

LOL x

The tear duck is fine - just an odd wet sensation......... they did them higher this time to try and prevent the eyelid drop........ but not high enough.................I can cope

Insider information: Looking positive for NICE with regards to Botox! Not guaranteed yet, but certainly looking up!

Here is the big thing for me, I have a young lady that I'll be using a modified version of the Botox protocol for. She has kind of responded to my normal techniques, but not fully (she is in the rare 10%!)

In my opinion, Botox is now absolutely necessary for her to see if we can help. It's the next layer in what I'm doing. It may not help but we must try it for her. After this we move on to the next level of treatment (which for me would be neural therapy)

Although NICE is supposed to be about patient care, it does have a political background to it also, to ensure the NHS does not run out of money by accepting all available treatments

Want to know the strange thing? It would cost my local PCT less to send migraine and headache patients to me, even if I charged my full fees than it does to send them to hospital!

My banana of a sister didn't tell me she has been suffering with migraines and daily for 7 years, even thought she knows full well what I do! I saw her earlier this week and we got her pain free in 48 hours

This shows the immense scope of patients that come in with these problems, some respond in a couple of days and others require months to make them pain free. Unfortunately the level of support available for this debilitating issue is almost zero

Good thing we have forums like this!