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The new neuro appointment was... fine-ish but disturbing

I got through the appointment intact which is good. It was remarkable how similar his recommendations were for me as they were for my younger brother... when our migraine history, gender and age are different, and family ties unknown. So I think he rather has the same sort of recommendation overall. He criticized my previous neuro, but rather harshly I figure. He said he didn't get why my previous neuro put me on Verapamil at all... but I have migraine associated vertigo which is getting worse and a long history of a persistent migraine aura, and combined with other preventatives, why not? Considering I have asthma as well and other beta blocker are a no go and this one is actually recommended for MAV along with such things as Topamax... then well, I get it. But I'm sure the hell am not going to argue about it because neuro's get fussy about that sort of thing and he is keeping me on the topamax and increasing my dosage. I concur with that, so no issues with taking one preventative off the table and increasing the dosage of one that historically 'did something'. Although his idea of increasing it to potentially 400mg does concern me a little since the recommended dosage for migraines is a quarter of that, maybe a little more if you are pushing it... my previous max back in the day was 125. He wants to aim for epilepsy levels, or the minimum mg for it anyway. But, hey, maybe that is good. My brain is nuts and topamax can be good for migraines, MAV and VS. So again not complaining about that. He wants to take me off the SERC which was to treat the vertigo. I mentioned my inability to... well drive and he said then I should not drive. I said that sort of makes it hard to get to work. I think he must have thought I lived in the city and had the ability to take the bus or something. But I don't. And aside from the crippling pain the vertigo and visual snow is getting as crippling. So take away a med that might be able to somewhat treat it in the short term might be tricky if I have to go back to work, but I didn't like that med, it did a real number on my stomach and I don't have to worry about that until I get that call to return to work... then I seriously have to worry about that and a number of other things. Those concerns are fairly minor...

Next... he is a firm believer in LIFESYLE changes. Aren't we all? If they were so damn simple to change when I was so concerned about that survival thing. There is this problem with acute enduring pain that never ends... you seem to sort of not give a damn about healthy living after a while. Then you do for a bit. Then you don't. Then you want to kill yourself. Then you don't. So fickle I know. So damn hard to cope with all that pain. But surely while you are coping with all that pain and managing to hold down a full time job you can also cut the caffeine, smoking and then add in a good half hour of exercise a day? Why not? Everyone else has no problem with those things right? Surely someone crippled by pain and barely managing to get through the work day will also have no problems attaining long term goals... and more than one at a time... because it is just that easy. Well obviously it isn't. One acute migraine at work that I cannot treat because I don't want to 'over medicate' and I really want a  smoke because psychologically it makes me feel better to have it. Yes, there are positive coping strategies to replace smoking... but those are learned behaviours and learning those in the highly strained work environment I am already barely coping with is apparently difficult. Deep breathing doesn't cut it. If I were working and this neuro spouted all this to me it might have literally caused me to tear up. Seriously. Because while working it is That hard to Exist let alone contemplating Exercise for christ sakes. But since I am currently not... I'm game. I'm already doing it on the advice of my shrink. Who I went to see if the first place because I was not coping and want to learn different ways to do so... so obviously I'm game for anything. If he want to add in cutting the caffeine (a trick I've done a time or two before) so be it, that one isn't so hard. And quit smoke? Sure. I want to anyway... much harder to achieve, but I'm game for it. If I have to go back to work all of that may go to hell in a hand basket very, very quickly... but I will aim to please and aim to set a habit of it all. Because it can't hurt. Well the exercise hurts like hell... he apparently does not understand FM that well, but certainly I do, and it hurts quite a bit to do what I am, but minute by minute I will do more.

Next... completely cut out opiates. Now that sounds like I'm hooked on serious painkillers. But I'm not. He means tramacet, which is tramadol plus tylenol and it is my Rescue med... not my primary treatment. But he doesn't believe in rescue meds and firmly believes opiates make pain worse. So... no more of that. Which just leaves me with Maxalt, my abortive which can only be used three times a week, max or you can get a rebound headache from it. And I generally don't even use it that much because of the rather severe side effects. But (and here is something I found disturbing in the info he sent me) I can take my Triptan up to 4 times in a 24 hour period? WTF? That wouldn't even make sense. It wouldn't do anything more than one or max two would. And already I'd be over the max recommended per week. And he is saying this is for every migraine. OR I can take OTC medications like Advil or Tylenol. Which... completely ineffective for one, and secondly, also risk of rebounding. I can't take advil or any such med and tylenol is like candy, it is completely ineffective. At least tramacet was mildly effective. So... I have Maxalt, but no way in hell I'm taking it that often. So... I have pain. Lots and lots of pain. With more exercise. Awesome. Just awesome. That really does suck balls but I guess I will find some way to deal. I'm really not sure why he has that triptan policy. That would cause my migraines to get worse very quickly. In my specific case it would also cause my breathing to get worse significantly quickly. But I'm special that way. I'm almost tempted to try his method just to say I did. But no, there is only so much asthma medication one can take before you end up in the ER because your an idiot and likely still have a bloody migraine.

He also recommends Botox, if the Topamax works for decreasing intensity but not frequency, then Botox can be added to the routine. I hated Botox. I mean all it did was make me numb in one area and move the pain to another, which made it very severe in another area and extremely unpleasant. But I don't entirely disagree with this because it would be more Botox and more shots... getting more areas and so forth and I think that would actually feel really nice on the neck right about now. Seriously really nice. But I still loath the stuff and the reaction I had was very unpleasant. Potentially it could work so I would not rule it out.

Do I disagree with his approach? Not entirely no. Not when I currently have the freedom to do more... or endure more pain I suppose I should say. But I don't know how long that will last because that also depends on him. Lifestyle changes are important and those things are things I want to to... or I want to want. Like I want to be in less pain. I will literally do anything they tell be if it will potentially reduce my pain in the future. If doing all these things at once does the trick then so be it. I can't take Maxalt or OTC meds like he suggests because I know thats not a good idea, but maybe less is better? Who knows? Maybe he will let me take the toradol shots... if I can without hurting my stomach in the process. He has a firm knowledge on migraines. He did the whole explanation thing... like I didn't already know all that, but maybe people sometimes don't figure that out along the way. I would have liked him to express a little more concern over the MAV and persistent migraine aura, which are the most troublesome aspect over and above the pain at this point... but it so happens his treatment of choice overlaps with a treatment said to work with those (even if he didn't agree that verapamil was an option). I could potentially have more severe MAV as a result, which is a concern obviously. I can't see very well these days and it worries me a great deal. But he seems very open to communication and that is a good thing. I think. I mean it could be worse, right? I knew he was going to change my medications. I knew there was a significant chance he was going to take away the painkillers... because doctors are like that these days, even without his solid reasoning. The lifestyle thing isn't unique or new. The treatment isn't spectacular or inspired... it is in fact, back to square one... just more. That is sort of funny. It is the exact same thing recommended so many years ago, just Way more of it. More topamax. More botox. More changes. But I have more pain, more vs and now MAV. If he is flexible and open to communication and up to date on research then we could get somewhere. And starting from square one never hurt anyone. See I'm not freaking out. See how well I'm taking all this. Still not freaking out.
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The crowded me out of the brain. Making no room for anything else. Distraction was impossible. You feel almost frantic with the pain but must be still.

What do you do? To get through it when you have no distraction?

I ask me this as I am really in the depths of a 9 level frantic level of pain right now. Hoping maybe some writing will be a distraction, but it isn't. As I said, the pain crowds the brain. I have to focus real hard to write and my head isn't clear. Too much pain to focus well. Things become quite difficult to do. 

I will say this: We cannot function. We have to just cope with the pain.

But we are Immersed in the pain, we what do we do?
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Relaxation breathing: I can't meditate when in high levels of pain. It just makes me think about how much pain I am in. Just not a good idea. But I do do relaxation breathing. I close my eyes. I focus on my breathing. I even…