December: End of Month Review

19/31= 61% Headaches
Relpax Taken: 13
Highest Number of Consecutive Non-headache days: 4
Highest Number of Consecutive Headache days: 4

I really have no energy for this post. December sucked. That is all.

Pain

For the last few days I have had horrible headaches. I am running low on my Relpax so I have been forced to try to guess if what I am experiencing is truly one of my worst headaches. If I take all of my relpax and then end up with the mother of all migraines, and no way to alleviate it, well, then I’m kind of screwed. The last 48 hours have been a blur of pain. I took a Relpax yesterday morning (which feels like ages ago), and I had to take one about an hour ago today. I can still feel the pain, which I would describe as a deep piercing from my temple to my right eyebrow, with waves of pain all around my eye socket, and there is this feeling of a gigantic mass wedged in my head that needs to get out. It’s not as bad as it was an hour ago, and not nearly as bad as it was earlier today. So the Relpax, Promethazine, and 2 aleve are doing their thing, and I’m happy about it. But my week is pretty screwed up, and I know that later I am going to be extremely drowsy (I can already feel it now). I haven’t made it in to work, hell I can’t even make it out of the house.

Sometimes I wonder what other people feel when they have a headache. How it compares to what I feel. I know it is all different. A few weeks ago my boss suggested a migraine cure to me: take 1 Tylenol with 1 ibuprofen. Yes, thats it. I remember holding back my shock at such a suggestion. Tylenol doesn’t even work on me. And my minimum dose of ibuprofen is 800 mg, or 4 tablets…and thats just for a little tiny headache. *sigh* I remember going to the ER or doctor’s office and the shots of Toradol they gave me having no effect. I guess I just feel like the level of pain I have to deal with on a near daily basis, must be kind of insane.

I don’t know what else to say, staring at the screen right now isn’t good for me. I’m going to go drown my forehead in an icepack and wait for more relief. Maybe this evening won’t be a total waste.

November: End of Month Review

10/30= 33% Headaches
Relpax Taken: 9
Highest Number of Consecutive Non-headache days: 4
Highest Number of Consecutive Headache days: 4

Well, I haven’t had a month like this since April. (Really, I just checked.) Is the Seasonique working for me? I sure hope so. I do have to say I am so proud of myself for sticking with this. I listening to that voice inside that said ‘this isn’t working’, formulated a hypothesis based on what I was seeing everyday in my own life, and I researched the problem. Although it took me a couple neurologist visits to really demand a change, I feel like I am finally making real progress. I don’t know if next month I will be better or worse. I don’t know what my cure is. I don’t know how long it will take. I don’t even know if it is possible. I do know that I will never again doubt my own instincts.

Changes: Here is what I plan to do in the upcoming months.

Quit the Topamax. Next neuro vist is in February, so that is the next medication change in my future.

Trade the Relpax for something else. Unfortunately that day has finally come where my relpax only works for a period of a few hours, if at all.

Diet/Exercise. I am waaaaay off track on my headache diet. Time to pick it back up. I would like to start walking again. Maybe I will transform that coat rack back into a treadmill.

October: End of Month Review

22/31= 71% Headaches
Relpax Taken: 17
Highest Number of Consecutive Non-headache days: 1
Highest Number of Consecutive Headache days: 16

If you think these numbers look a little scary…well, they do, and they were. This entire month has been horrific. (No Halloween pun intended there) I really have no idea what has happened to cause this level of continuous pain. The only thing I can think of is the MigreLief pills really were doing some amazing things and when I ran out of them last month due to financial reasons, I ran into some problems this month not being on them. (MigreLief=Feverfew, extremely high doses of Riboflavin, and Magnesium). I am back on them as of last week. I don’t think I can comment on the Seasonique yet, which I have been on for only 2 weeks.
The other possibility could be I am very sensitive to the weather changes. It has been raining almost non-stop, and I have been miserable.

You should see my calendar. So many painful scribbles…”BAD, BAD, BAD!” Exclamation points all over the place. I am tired of this month. It’s just been one big blur of badness. I’m moving on to November. If November gets any worse, I suppose I’ll be dead.

Desperation

At a little after 3pm this Monday, I have reached a point with my headaches that is somewhere between exhaustion and desperation. I am sitting here with the “Maxi-pad ice-pak” on my forehead, and I am home, when I should be in class. I am waiting for it. I am waiting for my full-blown migraine that has visited me nearly every day since October 12th.

Today I tried something different. I got up earlier. I drank more water. I took deep breaths when I started to feel even the slightest bit stressed. Head-On applied every hour. Mentally I told myself today was going to be a good day. But then around 1pm, the twinge begins, then the nausea, and finally the pounding when I try to do anything other than sit. It’s like whatever I do, nothing matters. I’m always going to end up in the same position.

Yesterday was a terrible migraine. Yesterday was the kind that made me want to cry, but I forced myself to hold it back because crying would make the throbbing worse. It was one of those days that you instinctually want to call your mommy. But you don’t because what could she do for you? Yesterday was the type of migraine where you start furiously thinking of people that might possibly have drugs that could knock you the fuck out. Yesterday I didn’t leave my bed. It’s the kind of migraine where nothing else matters but getting rid of the pain. Nothing.

I have already had 2 days like yesterday this month. To say this is causing me stress is an understatement. Because while all of this is going on, I still have a life that I am supposed to be living. I have tests to be taking, projects to be doing, papers to be writing, even simple things like an apartment to be cleaning.
But no, nothing else matters right now. Just the pain. And this is what I am afraid of. This is why every day seems to be a little worse. How much further can I possibly fall? I look at my calendar that has had no good days this month, and there is hardly any hope left. I know I have had months like this before. They are rare, but they happen from time to time. The pain just seems to hurt so much more this month.

I don’t even know what else to say.

September: End of Month Review

14/30= 47% headaches
Relpax Taken: 9
Highest Number of Consecutive Non-headache days: 6 (almost 9!)
Highest Number of Consecutive Headache days: 4

What I noticed about this month: When I didn’t have a headache, I REALLY DIDN’T have a headache, meaning it was a no-pain day where I didn’t need to take any medication, including use of Head-On. I have a lot of smiley faces of my calender this month. So that’s great.
There were a couple days that the Relpax Cocktail did not get rid of the headache, and it was so severe that I had to take a second pill in the same 24 hour period. That is not great.
I have really been trying to get rid of headaches naturally, instead of taking Relpax. This means I will try to calm down and de-stress, use Head-On, a Cold pack or Hot towel, or even the Sinus Buster Nose spray stuff. For a couple really bad headaches this has worked, so that is excellent. But it is very time consuming and I generally do not get much done on those days.

I am currently working on identifying my triggers. I will have an ongoing list up soon. Also, my Seasonique finally came through, and I should be starting that in about 2 weeks. Sooo…should have more news in the coming months about everything.

August: End of Month Review

21/31= 68% Headaches
Relpax Taken: 12
Treximet Taken: 10
Highest Number of Consecutive Non-headache days: 2
Highest Number of Consecutive Headache days: 13

This month I tried Treximet. The first day I had positive results. Headache was gone in 30 minutes, and I didn’t feel as sluggish as I do when I take the Relpax Cocktail. However by the next day the Treximet didn’t get rid of the headache, and I found myself taking 2 excedrin as a supplement. It was kind of touch and go for the next 3 days. I’m not sure this is the best pill for me. Since stopping the Treximet I have had a migraine every day since. It’s been 9 days. Every single day. I am stuck in some kind of reoccurring migraine/trigger loop and I have to find my way out, Relpax free. And it’s going to suck.

My enthusiasm for the Seasonique plan is a little muted, but I’m still hoping it’s going to work for me. I’ve been through worse. I can do this.

July: End of Month Review

13/31= 42% Headaches
Relpax Taken: 10
Highest Number of Consecutive Non-headache days: 4
Highest Number of Consecutive Headache days: 6

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I am very much looking forward to August! I am really excited and have a lot of hope for this Seasonique/Treximet plan. If everything works and my body adjusts properly, this has the potential to drastically reduce the really bad migraines I have every month. I also was looking through last year’s calender to try to see what I was doing differently during my best months. During December I had started an exercise program and that seemed to be a pretty good month headache-wise. Soooo…since I have the time and energy right now, I guess I will give Jillian’s 30-day shred another try.

Also, No more junk food. I have to get back on my headache-diet. I’m not quite sure how I’ve went from a non-soda drinker to having 3-4 different varieties of soda in my refrigerator at all times.

Nothing much else to say other than that.  I would say sorry for the lack of updates, but really no updates is a good thing in my case.

Neurologist Appointment

First of all, there was about a 2 1/2 hour wait time before even getting into the room to then wait another 30 minutes to see my neurologist, so I really waited for everything that was accomplished today.

The doctor approved me getting on an extended cycle birth control pill, which I have decided is Seasonique. Seasonique even has a patient assistance program so I should be able to get the prescription costs covered.

To help combat the migraines I have before, during and after my period, (since Relpax doesn’t do a very good job), he gave me a box of Treximet to try. Treximet is supposed to be just the bestest thing ever, since it is Imitrex + Naproxen. So we’ll see how it goes next month.

He also mentioned I should try Frova. If the Treximet doesn’t do anything, I will try that.

Lastly, I think we have the cyst/shunt confusion cleared up. However I have never seen my neurologist look so flustered, confused, and vulnerable before.

1. He did not know how many craniotomies I’ve had. He thought just one? I think my eye doctor even knows I’ve had two…

2. Two years ago he told me (over the phone) they did not place a shunt. We found out today the reason is because he only read the first page of my surgery notes. On the very last page they add all the good shunty stuff….that he didn’t bother to read.

3. He also told me the shunt did not show up on my CT scan. Today he tells me that it would not be visible on the scan anyway. (Shunt is so small, so small.) That tiny piece of information would have been helpful to me 2 years ago. However I understand he wouldn’t think to tell me that if in his mind I never had the shunt there to begin with.

4. He talked me out of getting a new CT scan with pure logic. My headaches are consistent and not getting progressively worse; The shunt was sutured in there; Between 2003 and 2007 the cyst remained the same size, which is about half an inch around….So there really isn’t an immediate reason to get another scan as long as I don’t develop any new problems.

I was the last patient of the day. I came with a folder full of printouts, notes, and calenders with headache data. My appointment was at 3:20, but I didn’t leave until 6:30. There was only one receptionist left. The cleaning staff was already making their rounds. Lights were off. As my doctor led me to the checkout area, he then proceeded directly into the Men’s restroom and a loud moan-like sigh could be heard through the walls.

Yep when I do my research, sometimes it’s a pain.

June: End of Month Review

First of all, June was an incredible month for certain non-headache related reasons. I should be saying this was a bad month headache-wise, but really I hardly felt most of them.

18/30 = 60% Headaches
I did include all mild headaches, and headaches that were brief from just walking out in the heat (“Heat headaches”)
I would say bad headaches were more like 11/30= 37%
Relpax Taken: 10
Highest Number of Consecutive Non-headache days: 5
Highest Number of Consecutive Headache days: 8

Things I have noticed since getting off atenolol:
I pretty much always have a slight headache when I wake up in the morning. However, as soon as I get up and going it goes away.

What I have changed: I have started taking Vitamin C and D along with the Iron that I take every day. Just ’cause. (It’s not really headache related.) On the plus side I have lost about 6lbs and I feel pretty energized most of the time.

My next blog should be after my neurologist’s appointment on the 28th.