Re: General BOTOX discussion board

[Dr Pav Khaira]

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!!

[Tee]

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.

[Tee]

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 ....

[Dr Pav Khaira]

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

[Mesha]

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!!

[Tee]

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

[Dr Pav Khaira]

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

[Tee]

oh great!!! lol

[Tee]

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............?

[Mesha]

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...

[Tee]

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'...

[Tee]

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

[Dr Pav Khaira]

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!

[Tee]

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

[Dr Pav Khaira]

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!

[Tee]

All mediation is politics and big drug companies and money - bugger the people in pain

I am pleased to read things are looking up....... I hope they use common sense and make this available.

Tee

PS Glad you were able to help your sister x

[Dr Pav Khaira]

Tee,

I completely agree. Politics should take a back burner to patient carey really hope it goes through! Even though Botox is a small part f what I do, it is an important part

For those who don't understand what I do it will be even more a key component

I really don't think the government realises the impact of migraines on the economy. Otherwise they would act more decisively

Studies suggest that migraines and chronic headaches cost the UK economy £7bn per year

[Loki]

I've been trying to get this put in my file as even a possible option for nearly a year now but the neruologist I went to didn't seem to care, and my old GP was nice enough and seemed to want to help me... but he seemed to do this by testing me on every drug available and sending me away... amount of time I've been to A&E over side affects of drugs... nearly the amount of times I've been to A&E over my migraines...

I couldn't even get doctors, A&E staff or neurologists to agree on my headaches though so I can't expect a treament that works, I have chronic migraines, sometimes they are heamplegic, some times they act more like cluster headaches...

I'm happy though I have one of thouse pay monthly prescription cards or I would be bankrupt from prescription charges that I'm currently on and in the past all the ones I#ve been on and written off...

I think doctors just don't appreciate a migraine sufferer who is alergic to Triptans lol!

[h.tomlinson]

I have been having Botox now for just over 1 yr (every 3 mths) and they do have some effect. I can not manage with just the botox (I suffer from chronic migriane so have daily pain) Each time I go I fear he will ask me to try without or say funding has been cancelled but so far I have been treated. I have approx 30 injections round my head, neck and shoulders then he 'follows the pain' where he will give extra shots in my most painful places.
Good luck to thoses thring to get it!

[Tee]

H.Tomlinson - I am pleased to read you have had some relief from it - what else do you do to keep them at bay?

[Kala]

I couldn't even get doctors, A&E staff or neurologists to agree on my headaches though so I can't expect a treament that works, I have chronic migraines, sometimes they are heamplegic, some times they act more like cluster headaches...

Hi Loki,

It is possible to have more than one type of headache. For example, I suffer from chronic hemiplegic migraine and SUNA (Short-lasting Unilateral Neuralgiform pain with Autonomic symptoms). SUNA is related to cluster headaches, it is just the attacks are much shorter lasting from just seconds to 10 minutes, and I can experience in excess of 200 attacks in a day. There is also SUNCT, which SUNA is a variant of, with SUNCT you have tearing and eye redness but with SUNA you have one or the other. There is then Paroxysmal Hemicrania, which falls in between cluster headache and SUNA, the attacks can last from 2 minutes to 30 minutes, with having between 5 and 40 attacks a day.

The there is Hemicrania continua, which is where you have a constant unilateral headache, which is moderate in severity but you can have exacerbations of severe pain with autonomic symptoms.

Autonomic symptoms, which are relevant for all these conditions include:
- ipsilateral (same side of head as the pain) conjunctival injection (reddening of the eye) and/or lacrimation (tearing)
- ipsilateral nasal congestion and/or rhinorrhoea (watery mucus discharge from the nose)
- ipsilateral ptosis (drooping of the upper eye lid) and/or miosis (constriction of the pupil)
- ipsilateral forehead and facial swelling
- ipsilateral eyelid oedema
- a sense of restlessness or agitation

Migraine sufferers can also suffer from autonomic symptoms, which is where confusion can occur when trying to diagnose, hence the need for a consultant neurologist who is a headache specialist who can tease apart all of your symptoms. Thus, if you are not happy with the treatment you are entitled to a second opinion.

I hope this helps.

Michala
x

[Scarlett]

Greetings all,

I heard on a health program today that it had been determined that Botox is no more effective than a placebo for chronic migraine sufferers. I found an article supporting the assertion and I am posting a link to the article below. I know Botox has been a godsend to some people. I reacted badly to a small dose Botox, so I will never know if it could have helped me.

The article below is on Medscape. Medscape requires that you create a user id and password to access their information, but there is no cost associated with access.

http://www.medscape.com/viewarticle/762669

Have a lovely weekend,

Scarlett

[Dr Pav Khaira]

Getting my application together to present to the PCT for a Botox contract. Let's see what they say!

My rep thinks I'll get busy with teaching too, I'm a private trainer for Allergan and they have loads of people waiting to be trained! Busy days ahead then

[Stephen]

After my seventh consecutive day of migraine ( nearly always on wakening or early hours )
I am dismayed that my GP has been unable to arrange Botox for me as the neurologist i was referred to says i will have to continue with Gabapentin increasing the dose stating side affects will diminish over time. I have also tried many other preventative drugs.

Migard does give me excellent relief but I am taking a lot. i do work so I am struggling at the moment! Any suggestions? Regards Steve

[Dr Pav Khaira]

Tee, I read that and it was (apparently) like that new book 50 shades of grey. It was semi pornographic!!

Reducing sensory input is EXACTLY what I do and it's so nice to hear someone else say that!!

You have made my day, thank you

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