To do, or not to do? That is the question...

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To do, or not to do? That is the question...

Post  Mini on Mon Nov 03, 2014 5:12 am

In a way this is a good news story, but it has left me with a serious dilemma.

IT is about Botox.
I live in UK, and here it is now possible to have Botox for M on NHS, which means I do not pay for the treatment/s. But it also means that in my Neuro's Clinic there is a long waiting list for the first treatment (after that it is every 3 month).

When I last saw my neurologist, many month ago, we've both decided that it might be a good idea to try it, because I still had more then 15th h/a in any month so he has booked me for the 20th of Nov for my first round of Botox.

But since then, this last summer and for several month now, my h/a changed in character for the better (this is the good news of course) but this also means, that apart from very mild morning h/a, level 1/2, I am practically h/a free.
I still have an odd M, maybe once, twice a month, but again it does not go above level 3/4 and is easily dissolved with a dose of 50mg Imitrex/Imigran, so really it is nothing I cannot handle as it is.

To me this is a minor miracle, but now I am left with a serious dilemma.
As the date of my treatment approaches I am not sure what I should do:
do I still have the Botox, just in case ma /h/a return, or do I cancel the treatment, and might never be able to get back on the waiting list for a very, very long time, even if I need it, because I know there is huge demand.

So, what do I do, do I go ahead with it, or do I cancel the Botox apt, this is the question.
I really have not idea what to do for the best, and would be grateful for any feedback or suggestions. Thank you.
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Re: To do, or not to do? That is the question...

Post  Kem10 on Mon Nov 03, 2014 5:54 am

First I want to say that this is such good news and I rejoice with you at the great improvement in your frequency and intensity of HA. We can't really tell you what is best of course but I do know that were I in your place the Botox would be off the list for now. It doesn't seem like a good idea to mess with such significant improvement. Praying you make the best possible decision.
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Re: To do, or not to do? That is the question...

Post  Mini on Mon Nov 03, 2014 6:47 am

Thank you so much Kem1, this is a very useful contribution, of course you are right. I can make things worse, and this is a real possibility.
I do not trust M though, you never know what comes next, and I think my (irrational) fear is, that as soon as I cancel, my head will get out of control again. Of course no one can tell...
I hope you have a good day today.
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Re: To do, or not to do? That is the question...

Post  dcook60 on Mon Nov 03, 2014 8:57 am

yes! you surely did have a minor miracle. i'd call it MAJOR. is there anything you can share with us about possible causes for your improvement?

please remember the downsides of botox. of course, you've read about those here, like weird looking faces and etc. like the others said, it might be best to leave well enough alone.....dianne
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Re: To do, or not to do? That is the question...

Post  Mini on Mon Nov 03, 2014 2:30 pm

I was thinking about it myself, wondering what could the reason be. I certainly did not start on any new M medication, or treatment. But I also found that my a-i condition Fibromyalgia is also better, so I was wondering if the inflammation process has any bearing on this.

I had an operation to remove my gallbladder earlier this year, things like that. I really don't know what to think. But I will keep thinking about all the possible causes because I am puzzled myself.

I also know, that my M have changed pattern so many times over the years (although generally for worse, but not always), so at the moment I am just grateful for the improvement. I definitely don't want to make things worse, so I will have some thinking to do.

BTW I am almost 100% certain that my remaining morning h/a are due to dehydration, because as soon as I have my morning drink I am fine.
I do not want to drink too much in the evenings because I do not want to be woken up all the time, by the need to go to the bathroom. I know that dehydration was always one of my worst M triggers.

Sorry I could not be more helpful, Dianne.

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Re: To do, or not to do? That is the question...

Post  Migrainegirl on Mon Nov 03, 2014 5:09 pm

If you get the Botox now, how would you know if it worked?  

I got Botox and ended up with several weeks of bad migraines afterwards. So you actually do run the risk of making it worse.

I recommend asking them to delay your appointment for 6 months. That way you are not totally off the list and can see how you are doing.
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Re: To do, or not to do? That is the question...

Post  Mini on Tue Nov 04, 2014 2:55 am

Thank You Migrainegirl, you are absolutely right, of course. I can end up with more pain, instead of less. Thank you for your insight.

My one problem is that knowing from the past experience how unpredictable the whole M condition is, I still live in fear that the moment I cancel it, it will return will full force and I will regret missing that Botox.

Still, taking into account all your interesting comments, I think I need to be rational and postpone the Botox, because I might end up with more pain and this is the last thing, I want.

I am so sorry that you had such a poor experience with Botox, but it is always worth trying new things, when we are in pain.

In conclusion, I think I need to be brave and pick up that phone to cancel.
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Re: To do, or not to do? That is the question...

Post  Migrainegirl on Tue Nov 04, 2014 7:23 pm

Just try to delay rather than cancel. That way it would not be such a long wait should you need to change your mind and get the shots. I do know how fickle those migraines can be Smile
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Re: To do, or not to do? That is the question...

Post  sailingmuffin on Fri Nov 07, 2014 8:31 pm

Hi,

I agree with the others. If the headaches are getting better, which is absolutely wonderful news cheers , then postponing treatment might be a good idea.

Is there a way you can keep the appointment with the neuro and talk to him about what is going on and what the best option would be for you now? This way everyone is on the same page. I'm sure it would be possible to postpone the treatment and you would be able to have it if the headaches got worse.

I currently have Botox treatments every three months and it has helped a good deal. I had a few rounds before I had a nerve stimulator implanted and experienced no improvement. However, as with the rest of my migraine treatments, Botox, which did not work before the stimulator, is now helpful. My current neuro has no problem thinking outside the box and he felt that the two treatments- nerve stimulation and Botox treatment might work. He was right.

I'm so glad to hear that the migraines are better.

Pain free days
sailingm
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Re: To do, or not to do? That is the question...

Post  Mini on Mon Nov 10, 2014 6:34 am

Just to apologise for not writing to say Thank You to all of you who came up with such useful suggestions.
In fact I wrote with a follow up, but the post disappeared before I could send it and now I need to go out but I will write, later.
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