Wednesday, April 10, 2013

Botox: 9 Days Later

It was nine days ago that I got my 19 injections of Botox for my second round of treatment. I find that  an amazingly long, and yet very short time, those nine days. But I'm getting ahead of myself. Last Monday, April 1st, I wrote a series of three blogs on how I'd had Botox back in December, what my story with it was like, and some phrases that were on my mind immediately after the injections. 

The last phrases that I wrote down were: 
This is only my second treatment, but so far the differences between this and last time that I've noticed are:
  • not as dramatic a drop in pain
  • injection spots more tender
I hit "Publish" on those phrases roughly four hours after my injections. Well, these two snippets of thought were going to be all too important when the fifth hour arrived with hellish pain. Each injection point burned and hurt. None of this soreness or tenderness.  No, instead it was as if barbed wire dipped in acid was wrapped around my skull on the circumference where the injections had been, and the acid was burning a path through my pierced scalp and into my skull. 
This was no migraine, I knew that. I stayed up rather late, waiting for the burning pain to dissipate, and when, it didn't, tried to sleep it off. Only I couldn't lie my head down because that made me start to feel as if I were going to pass out from the pain. I was up the majority of the night, and finally managed to catch 1.5 hours of uncomfortable sleep near dawn. That was it though, and when I woke, the burning pain was a  high 9/10 even though my migraine was only a 7/10. 

When it became obvious on Tuesday that the burning wasn't going away, I called Dr B, my neurologist who had given me the Botox, and let him know that something was drastically wrong with my reaction. Dr B called back remarkably quickly, and called in an Rx for a five day course of prednisone to shock my body back into sync. Well, the prednisone didn't help one whit and so he took me off of it on Thursday after only my fourth dose of ten. We basically decided to see if the burning was a temporary negative reaction to the Botox, and that I would begin to see improvement later in the week, but I didn't. 

I've been at an 8/10 - 9/10 burning headache for nine days now. Mind you, this is not migraine pain that I'm talking about right now. This burning pain is very different than a migraine, and I know this. I still have my constant migraine going on at the same time as this new reactionary headache, but the migraine's mostly been behaving itself at a mid to high 7/10. 

On Sunday, I ended up in the ER because of the still-acidic burning points. I had Dr B's recommendation of asking for a shot of Toradol, and I did receive that in my IV cocktail that evening. I was positively delighted when the headache, after a fast injecting of Fentanyl, dropped to a 7/10. However, that much relief lasted only 16 hours, and then I was back at a 9/10 on Monday. 

For right now, our hopes of getting a hold of this negative reaction to the Botox lies with my taking the maximum does of OTC Benadryl. Dr B put me on this protocol last night, so I'll give it a few days and then see how I'm reacting and whether I need to call Dr B back and ask for more help. As of now, I'm attempting to reserve judgement and am trying to think of only the Sunshine and Skittles parts of life. 

Whatever the results I have with the Benadryl protocol, I'm 99.98% sure that this negative a reaction to the Botox injections means that it is now off the table for future treatments. There is no way that I want to repeat this acidic burning on my skull every three months, and, yes, I'll put down the Skittles long enough to admit that this depresses me greatly, as I had such a wonderfully positive reaction to the exact same injections in December. I hate to think that those days of 5/10 migraines will become a thing of the past again so soon.

But right now, I'll just let tomorrow take care of itself.

Skittles and Sunshine, Gretchen. Focus on the Skittles.

Monday, April 8, 2013

April Blog Carnival

April's migraine blog carnival theme of "Unexpected Blessings" has been posted.

I encourage you to go and check out all the different good things that have come out of people having migraines and headaches. 

Friday, April 5, 2013

Diamonds in Rough Times

Since my chronic migraine really got the part underway, in the early fall of 'o1, a lot has changed. I was 13 and full of, slightly naive, optimism regarding life for the most part. Sure, I had bad migraines, but I'd had them all my life. However, I had my life and my band of three best friends all there, coasting alongside me, as I aged appropriately, achieving milestone after milestone on the walk of life. Everything was fine.

Then I got the migraine that never went away; and everything changed.

If my life with status migranous were a gift from Santa, it would be a very LARGE lump of coal. I'm not sure what I must have done to be naughty enough to get that much coal, but it could have been lots of little things that piled up over time. It's immaterial for this blog, in any case. It simply was as if, on Xmas Day, instead of getting a wonderful new book or great CD, I got a grimy piece of coal. Period. The next few years were what I suppose you could call "interesting". Just as that piece of coal would flake off dust onto my hands, my life started to turn to dust. I started to lose things I didn't even really realize that I had. Finally, when forced to withdraw from school, I lost contact with my friends. I was devastated. The migraine coal I'd gotten had left a huge smear across my life. I just dropped it where I had stood, laid down, and played "invisible". 

That's when the strangest thing happened. When I gave up on being invisible, and came, sat up, and looked around for my lump of coal of a social life, I didn't find it. Instead, there were beautiful diamonds of all kinds of shapes and sizes surrounding me. I was monumentally confused, but then, slowly, I came to realize something:

My life was now filled with shining, enduring friendships. There was no list of requirements, a checklist that a person needed to fulfill in order to be my friend as there almost universally is in mid school. Instead, if you could withstand the intense stress and pressure that was my life with status migranous, you were in for keeps. 

I look around at the kids I'd been friends with in middle school who I've caught on Facebook. Their friendships seem to be so transient, with a great deal of drama and backstabbing. It makes me sad to think that they are missing on some of the kinds of diamond friendships such as I have with my friends. What sometimes worries me is that I too might have such friendships if not for my migraines. 

So, despite the pain, agitation, and stress that my life has gone through with the pain of chronic migraine, I've got some of the truest, most loyal, trusting, and perhaps most importantly, understanding friendships I've ever seen. And I am incredibly lucky that, while the migraines are no picnic, I have gained some truly remarkable people who are important in my life in a way that they never could have been otherwise, and feel blessed.

Monday, April 1, 2013

Botox Blogs in order

I've posted three blogs tonight, two about the history of my experience with Botox, and then today's with an example of how my brain functions shortly after the injections.

For those who prefer History first I recommend this order:
Botox and playing catch-up Part I
Botox and playing catch-up Part II
and then today's
Thought Lists and Botox

But if you just want know the more immediate response, Thought Lists and Botox is the way to go.

UPDATEDBotox - 9 days later will give you the latest. 

Botox and playing catch-up Part II

This blog entry is a follow-up to Botox and playing catch-up Part I. It can stand alone, but will make greater sense in context.

From my personal journal on Feb 6, 2013:

Ever since I got the Botox injections last December, I've been flying blind, by the seat of my pants when it comes to knowing WHAT THE HECK my migraines are doing. The pain signal has been, comparatively, wiped out, and thus everything that I could explain well went out the window. It threw me off then, and it's still throwing me off over a month later. 

I have a pretty severe migraine spike right now; I know this. But I feel so stupid on the surface for saying that, as I'm at a bloody 7/10. I mean, how pathetic is that? I LIVED at 6's and 7's for YEARS, and all of a sudden, it's a Big Deal to have a 7. But the thing is, that while the migraine pain was the most obvious and understandable symptom of the migraine/s, it also kinda made me forget all the other ones that it eclipsed. 

The eclipse is now over. Nausea, vertigo, fatigue, painsomnia (when the pain won't let you sleep), pain-brain, etc.; I've got them all. I find myself struggling to function with minimal pain levels, and part of me insists that I Carry On, as the pain doesn't have me nonfunctional. The fact that I'm still nonfunctional is besides the point for some reason. It's like the pain was my witness and alibi for allowing myself to take care of my body.

This is all so very frustrating. This is probably reading like a short, simple entry, but so far it's been over 45 minutes to think, process, and type this much. 

Am I going to continue the Botox treatments despite it messing with my mind like this? Yes. Dr B said it could take 3-4 treatments to reach full medicinal levels. So I don't know what I'll end up being like when all is said and done. And also, quitting now would equal chickening out of the fight for normalcy in my book.

Why do I need pain to validate myself? Is it because I don't know an existence without it? I have no memories of what No Pain is like, if there were ever any memories like that. 11 years of a constant migraine is a long time, and it's basically actually closer to 15 according to Dr G. That's over half my life I've lived in near/constant migraine pain. 

Maybe it makes sense that I don't know how to justify my actions without the pain? After all, the problem is still there, it's just that the red warning light has been dampened.

Botox and playing catch-up Part I

[Editor here:  The below rather rambling style is an indication of how Gretchen's mind is firing right now, three and a half hours after her second round of Botox.]  

 Where to start this blog entry? Well, as you probably guessed by the title, it's got a lot to do with Botox. In fact, it's got everything to do with Botox. I'm having my migraines treated with Botox and have been since December. I just got my second series of injections today, and decided that it was a good time to make a blog entry, or several, about my experiences with Botox so far, as I've now done a full three month treatment cycle, and have a vague idea about what I'm writing now.
      That, and I was going through so much shock during that first initial time, that I couldn't blog about it. My brain was just on overload. I did keep a kind of Botox diary in my personal journal, so I'll be quoting myself as I discovered the way that I reacted as time went by. So, with out further ado; my journey with Botox:

      Slowly over the course of 2012, since my jaw surgery in early February, my daily head pain/migraines changed. This was great, as I'd have hated to think that I had my jaws broken in five places for nothing. But as my jaws healed, I noticed that while my daily migraines were still there, I was getting a lot more of the ice pick headaches on top of that. I talked to my neurologist Dr B about it after I was finally healed and he decided that it was time to try the Botox treatment as my symptoms were presenting much differently in such a manner as now indicated it was worth a shot. (No pun intended)

      After I got pre-authorization from my insurance, I came back and got a total of 19 little injections. Some were just over my eyebrows, some at my hairline around my ears, and then some at the nape of my neck. I had no idea what to expect. Later that evening, I typed up what was going on.

Excerpt - I'll admit that I'm almost creepily calm. The throbbing of my head's nearly gone, and I don't really know how to deal with that. The gnawing in the back of my head is gone almost entirely, and I don't know how to live without somebody eating the back of my head all the time. It's just been a part of my life for several years now...
     My mom also said that I'd been acting slightly doped ever since the injections earlier that day. I didn't really care, as I was still giddy.

      The next morning, I made another short entry after doing some math and a fair amount of self-reflection and research. My migraine, I decided, was a 5/10. The last time I'd had a 5/10 was April 12, 2010.

Excerpt - I have never had a recorded 4/10, and my pain record keeping goes back at least 4 or 5 years. So this is... awesome. 
     Yes, it really was awesome. It was also going to prove to be something of a Thing. I started noticing other things going on just a matter of days later.

Excerpt - I'm still at a 5/10 to a 6/10 pain wise. It's weird tho, as I'm really not used to it. Every now and then I'll get a rush of blood to a part of my head, not necessarily raising the pain level, just making me kinda dizzy for a couple of seconds. It's annoying, and I think that it's my body's way of searching for the pain that's missing. 
      The 5/10 to 6/10 was wonderful when I had been living at close to an 8/10 for several months.

      Then I noted the most noticeable, and so far only slightly-more-than negative Botox related thing. It was going to get interesting from here on out.

Excerpt - I turned into a total space cadet [yesterday]. I couldn't smell dinner burning until Mom pointed it out. I mostly just stood in one place and stared at air. I was so tired, and could not concentrate long enough to brain or sleep.
In fact, I was acting exactly like I would with a migraine. Only there was one problem: I didn't have any notable head pain. 
So I'm wondering if, with the Botox, this is the new migraine I'm going to be getting. And if so, what am I to do about knowing when a silent migraine's come, and when I'm just tired, or being stupid?
So anyway, be it now noted that I think I'm getting silent migraines, and that I'm scared regarding that as the pain was always my justification for being as dysfunctional as I was.

      This is as far as I think I can take this blog entry, because the next excerpt is close to a full blog length itself, and is pretty stand alone.

Thought Lists and Botox

I want to share with you what it's like for me to get the Botox treatment. It's time. Here are some of the feelings that I felt in the first half hour.

Immediately after my Botox shots -

  • giggly
  • tilty
  • light-hearted
  • light headed
  • hopeful
  • anticipitory
  • not so good with the brain
  • slurring 
  • mixing words
  • sounding drunk 
  • floaty

4 hours later, however, I've added -

  • anixious
  • wistful
  • dizzy
  • vertigo-ish
  • still hopeful
  • more grounded
  • sluggish blood
  • weighty
  • reflective
  • remembering
  • too much feeling, not enough words
  • hard to write
  • want to write
 This is only my second treatment, but so far the differences between this and last time that I've noticed are:

  • not as dramatic a drop in pain
  • injection spots more tender
  • I'm calmer than the first night last time
  • I'm not feeling as in the dark
  • I feel a little more well versed in what to expect

I'm glad I've done the second treatment because:
  • I know that it can take up to four treatments to get the full benefit.
  • the idea of low(er) pain is much less foreign to me.
  • I can imagine how acute migraine sufferers could feel frustrated with the lack of knowing.
  •  it shows that I'm going to do everything that I can to try and make myself a person not a patient. 

To those of you who are or may be considering Botox for yourselves, remember that I am only one case. I am an example of a possible reaction, not a guarantee or a dismissal. I would recommend Botox if the you are going to be willing to accept that it most likely will take up to a full calendar year to know if this will work, and if it does, that it isn't a silver bullet. As I understand it, if the Botox works, you will need to keep it up for the foreseeable future. 

Other than that, I'm not yet qualified to say.