BOTOX

[Pattipan]

I had my first lot of Botox on 6 Jan 2014 after 43 years of migraines and headaches and just about every other treatment in the book. The only thing I've refused to try was Topirimate as the side effects sounded worse than the headaches I now get.

I was, I guess, addicted to Zomig (2.5 Rapimelt) as I have been taking up to around 21 a month ever since triptans were first prescribed to me, which must be over 20 years ago now.

Only one of the Botox jabs was rather painful and the treatment was over very quickly. I had migrainous feelings for two days after and took Zomig, but then mainly relied on aspirin, paracetamol or ibuprofen (not taken all at the same time!) I varied what I took to hopefully avoid triggering MOH from these OTC painkillers and never took more than 8 tablets in total in any one day.

The results from the Botox have been excellent in one respect, as I took just FOUR Zomig in January, despite having a permanent headache at the end of the month due to a heavy head cold! I was so pleased and actually quite proud of myself because I had never been able to summon up the courage to even try to go Cold Turkey before. There was always a good reason to take a Zomig as I knew it would almost invariably "cure" the head pain and let me get on with a relatively normal life.

I'm still getting headaches/incipient migraines quite frequently, and I'm sure the ones that are triggered by stress aren't helped by worrying about what I should do to control them. So far this month (it's Feb 15th) I've taken 2 doses of Zomig after nothing else shifted the pain (which then went a couple of hours after taking the Zomig), but should I be taking these at all? It was not made clear to me how I should handle any headaches I might get and yesterday I had one which felt like I was winding the clock back 30 odd years to The Time Before Triptans. I'm trying not to take more than one Zomig a week and the last one I had was last Tuesday when a similar retro headache occurred.

My GP is great, but I know more about migraine than she does and I have to wait a fortnight to get an appointment and I haven't seen my neurologist since he talked to me before I had my (useless) GON jabs both sides last February. I do feel a bit left in the lurch and this Forum is so supportive, I thought someone reading this might have some useful advice.

Still, two Zomig by halfway through a month is better than my usual 10!

Patti

[rosianna]

great to hear!!

[woodlog]

I'm in a similar boat: migraines all my life (I'm now 66); tried everything (including Topirimate, a nerve stimulator and all the known prophylactics) and been dependent upon triptans ever since they appeared. I've had three Botox treatments so far and have experienced more relief than ever before, with virtually no side effects. When I get a migraine, it is significantly less intense and lasts for a much shorter period.

I think the truth about triptans is that they alone amongst drugs stop the pain but they generate a massive problem of dependence: nowadays I take one if I'm absolutely desperate (driving a long way in an emergency) but know I'll get a rebound headache for the next two or three days and at some point will have to endure 15 hours cold turkey: wall to wall agony.

Since having Botox, I've managed to avoid triptans almost completely: just moaned and groaned through the pain which hasn't lasted more than four hours. Since December's treatment I've had lots of pain because the almost continuous very low atmospheric pressure makes me suffer: interesting that in New York, they issue a migraine alert with the weather forecast as we do here for hay fever sufferers.

Botox will not work if you take triptans: one a week should be manageable but the important thing is not to drift back to daily consumption. Doctors (even neurologists at Queen Square) know they are working semi-blind: nobody really knows how to stop chronic migraine and most GPs know less than their patients about the condition. But Botox looks the most hopeful option. At least it does not appear to cause debilitating side-effects like everything else used for those with chronic migraine.

[teadrinker]

Are you going to get the opportunity to try botox again? If so, it would be worth having it, to see if another round of injections has a similar effect. I found it took more than one go to find the most effective places to have the injections.

That said, it hasn't got rid of the migraines completely, rather tended to damp them down most of the time - so that I don't need medication. The odd nightmare has still crept through. In those cases I've tended to keep taking the usual medication as I've felt I've needed it. I know they say to take triptans as soon as you get a headache but since botox I've found it better to wait a bit and just see if the headache goes away (which a lot of the time it does).

I had a bad patch when the clocks changed & am now taking atenolol, and things aren't that bad again. I haven't any botox for 5 months - don't know whether to have it again or not! Very glad that I did try it though as it has given me a break.

[Pattipan]

Thanks for your responses. Much appreciated. I was told I'd be called in again in 12 to 16 weeks so that'll be April or May. I've been keeping an official migraine diary which I don't find has enough space - and also my own detailed list of what happens when. I've also found the muzzy incipient headache feeling often goes off untreated usually helped by sitting up in the morning.

I shall definitely mention how much more painful my neck pain has been in the hopes round 2 of Botox may be adjusted to help with the discomfort.

But I'm so relieved to have found something which helps and my family has noticed an improvement in my mood and general well being too.

Hope it works for everyone else waiting to try it.

Patti

[Queenbee177]

Hi I have had 4 lots of botox at Queens Square due my last lot in a few weeks, after 5 they like to see how u go. Its not a miracle treatment, i still suffer daily but as opposed to a pain score if 9-10 they are now about 3, however I do have the 9-10 headaches just not as often. Trying flunarizine (?) given on a named patient from the National Hospital in Queens Squares, feeling positive and its better than tomperimate which upset my tummy

[wcaroljaneuk]

My son (aged 30) has tried Topiremate, Pregabalin, Sodium valproate, Botox, vagus stimulation, transcranial magnetic stimulation, occipital nerve injections, and Cefaly - none of which made any difference to his NDPH of the chronic migraine variety which he has had since age 22.

He has been taking Flunarizine for 18 months and this is the first medication which has made any difference - his average daily pain score has reduced from 6 in January 2014 to 1.4 in December 2014 - this has made a HUGE difference to his life and he is gradually becoming more like the son I knew!

3 months ago he was started on Candesartan 4mg daily as well, this seems to have further improved the pain scores, as prior to this the average was 2.5.

I hope the Flunarizine also helps you - I know it was stories like this that helped my son to persevere, as the Flunarizine did not immediately make much difference, just a VERY gradual reduction in pain score averages month by month until the 1 year mark when it was down to average of 2.5.

[Mywholelife in reply to wcaroljaneuk]

Hi I'm new Ive had my first migraine in 6th grade. I'm guessing most of the group is not in the U.S.? Im not regonizing most of the medications. Im 63 now and was forced to move from S CALIF on the West coast to the mid-west. It's called Tornado alley. Changes in weather are my biggest trigger. Thunder storms rage from FEB- SEP. Over the 15 yrs here I now suffer daily migraines. I have had 3 BOTOX treatments. The first made me have a 5 week migraine so bad I BEGGED my Dr to put me in the hospital. I'm on extended relief morphine (covers two other painful health issues also) I take instant release morphine and shots of phenerghan for extreme nausea. I've been ok'd for 1 more BOTOX treatment. There is mild improvement but now when I get a migraine the pain scale would be way beyond the range of 1-10 we use here! Has this happened to anyone else? I use a tens unit. If you have google try a search for placement of electrodes. I just saw you can put one on left temple the other patch between rt thumb and index. These are also acupuncture points. Trying rt now. My nurologest wants me to get a

"Cefaly" unit but at $350usd that's very expensive. Was any relief at all achieved?

Does the Cefaly work basically like a tens unit?

Please I'm now bed ridden I can't break the current 11day migraine! Any input ID be so grateful for. When my new nurologest handed me a 2pg list of Meds and said what have you tried there was only one I had refused- Lyrical sp?might be wrong. I can't take any of the ERGOTIMINES, things like IMITEX ZOMIG put me in hospital.

Thank all of you who might answer and I'm so very sorry for all of us that suffer this terrible Nuro disorder.

To the person who's post I lost when I had to fill out form to post- never ever put a tens patch over an artery. VERY dangerous!

Take care everyone and I hope your families understand this illness. I've lost my daughter and most friends because they can't grasp this terrible sickness that strikes us down with little warning. Good luck everyone.