Chiari malformations...Pseudotumor Cerebri...or just plain migraines, still?

I'm still having the occasional headache episodes. For the past several years I have just been doing a prednisone taper (starting at 60mg and decreasing by 5mg per day for a total of 12 days) and this takes the migraine away. I do this on the third day of a migraine and they generally stay away for a month or more. I guess I've probably had one to three prednisone treatments per year for the past few years.


Last year I injured my neck (folding laundry on the Sabbath...that's my little joke, as if God punishes us like that. but really, I was just folding laundry, turning my head, and then it went into a spasm) and after a few weeks I still couldn't turn my head from side to side very well. I asked my doctor if there were any non-crazy chiropractors in our town. He gave me a name and I got brave and went.


I've always been skeptical of chiropractors. I tend to pass judgment on big claims like having one's allergies cured by having a spine adjustment or feeling energy and holding your allergen while bringing your left foot in and your left foot out and doing the hockey pokey until there's no allergen about...


So it was a leap, trusting my instinct to see a chiropractor, something my gut has told me for years but my physicians have shook their heads to the practice.


My neck did eventually heal, but the remarkable event happened when the chiropractor gave me a migraine during an adjustment. Before I left the office I mentioned my new symptoms of nausea and disorientation and he adjusted me once more and the symptoms cleared.


Remarkable. I thought if he could give and take away a migraine, perhaps he could take them away.  I began seeing him when I could, trying for the beginning of a migraine. Then when I did tapers I noticed the duration of my migraine symptoms shortened from having them the full two weeks of the taper to often finishing the last few days symptom-free.


This year I decided to omit the prednisone taper and just do the chiropractor adjustments. I made a deal with myself that I would try the adjustments for two weeks and then if I still wasn't better then I'd begin the prednisone. I believe I've gone all year, since January, without taking any prednisone. Which is incredible.


Though I am currently on my first dose this year. My chiropractor left town. I saw his previous partner. The first adjustment was fine but the second one left me worse. I went home feeling a rush of pressure, like fluid going from my neck to my head. The same head pain at the bottom-back of my head, nausea, etc. I went back to the chiropractor two hours later and he readjusted me. And then he said he did an adjustment that is supposed to increase CSF fluid flow to the brain. I believe that is what I was feeling--the fluid-pressure-rush feeling.


I went home with a horrible headache and it continued through the next day. While I was lying in bed I researched CSF pressure, headaches, along with the other symptoms. I stumbled upon Chiari malformation. That name was familiar to me because my little nephew had corrective surgery for this condition that limits CSF flow because of a blockage caused by dissention of the cerebellum into the foramen magnum of the skull.


Chiari malformations are three times more likely to occur with females. The mean (most common) average age of onset is twenty-five. I was twenty-seven when this all began. Activities like lifting heavy objects or straining cause an attack (which has been my trigger on multiple occasions: my mother still gets anxious anytime I start lifting something because of a rather horrible episode of vomiting and headache after lifting a potted plant for her). Tinnitis, headache at the back of the head, the list goes on and on of the similarities between this chiari thing and my headaches. What has always bothered me is that I was fine, perfectly fine. And then one day everything changed and not one doctor could explain why.


I'm a control freak. This health condition changed my life and has made me feel out of control of my body. Which then leads me on searches trying to make sense of it all on my own. Someday the world will understand these neurological conditions...until then I'm responsible for discovering my body's issues.


I saw my gynecologist before starting the prednisone to see if I could have him manipulate my hormones (I've strange menses) to get rid of the migraine. He urged me to take the prednisone and to definitely see the neurologist and ask him about the hormone changes with my headaches before we decide on anything. I discussed my idea of the chiari and he brought up another he wanted me to research (he printed off some credible material) before seeing the neurologist, on pseudotumor cerebri. Those seem to have a comorbidity, often occurring together.


This week I had my annual eye exam and I discussed with the optometrist this headache and he ruled out anything wrong with the nerves in my eyes (which happen with pseudotumor cerebri). It was timely to see him because the night before my headache was behind my left eye and get this: for several hours my very poor vision improved significantly in that left eye. The optometrist hadn't heard of that before and couldn't explain it. While it would be fantastic to have sustained improved vision, it actually scared me. But to soothe my (optical and anxious) nerves, my eye no longer has that intense pressure making me feel like it will pop out, and my vision is just as terrible as usual... 20/450 vision.


I see the neurologist tomorrow. I haven't seen one since 2008. I figure it's time. I have a few things I'm wondering about:
1. Are these actually migraines or was a diagnosis missed years ago that would explain this abrupt change?
2. Are there any new treatments I can try, instead of the prednisone? I'll keep doing the prednisone if it's the only choice, but I really don't feel it's a safe, long-term option.

Expecting...a baby and a "Beasty" in July

I am expecting a baby in July. The last migraine I wrote about...well during the time I was on prednisone my ovulation changed and now a baby is the beautiful result of that pain. Pretty great deal, in my opinion. Last year we tried for a few months for the baby that was later miscarried. This time it was a total surprise--and I even had two doses of Migranal, a drug that will cause uterine contractions and miscarriage. This pregnancy is now at 14 weeks and this baby is hanging on.

So I think it is the prednisone I was on that facilitated this pregnancy. Also, perhaps the reason I had such a powerful migraine, the kind that I hadn't had in months, is because I had a strong ovulation and menstrual cycle. Perhaps I wasn't ovulating for a few cycles. This is all speculation of course. As are all my ideas on why I have migraines, what helps to deal with them, what treats them. Well, prednisone is not a speculation. That drug, I know for sure, is what helps me overcome the cycles of headaches. Blessed drug.

Which brings me to my pondering...

I assume that when this baby comes I am in for a major migraine. Major. I don't know if it will be the day the baby is born. Or perhaps when I am finished with the post-partem bleeding, like with my miscarriage last year. I don't know when. But I do know my body and how it reacts to hormones. I do know that when there is a significant hormone shift, I get a migraine. A migraine that can last days, weeks and months if not treated with a strong prednisone taper.

So what happens in July?

I am beginning to wonder about this now, wanting to make a plan of action. A safe-for-baby plan of action. What am I going to do when I get a migraine?

I am going to breastfeed. I guess I should state that, for without that, I wouldn't be worrying about drugs. I would just take the prednisone and carry on.

But how will the baby be affected, through the passing of drugs into the breast milk, by Prednisone? I read online (which I hate going there for sources of medical information---the information highway for hypochondriacs!) that some does get to the breast milk. Also I read that the American Academy of Pediatrics considers it to be "compatible with breast feeding." But what about at a high but tapering dose? And will it cause the baby irritability and restlessness?

Anyway, I am saving these questions up for my next OB appointment. I assume I can take it and the baby will be fine. But I am so very careful when it comes to drugs and my babies. I have had headaches, back pain, shoulder pain with this pregnancy...and I haven't touched a single pill except my prenatal vitamin--even with Tylonel being okay. So very careful.

So I look forward to this baby...and plan for the Beasty. When I have a plan to treat the migraine, I can calm down about it. ...And then, because I'm carrying a life inside, there will definitely being something else for me to worry about. Because that is what I do.

I don't want to bow to the Beasty

So I have already stated on my previous post that I started a prednisone taper on Tuesday. It is now Saturday and this morning I took 40 mg of the steroid. About an hour ago I was doing some chores with my husband and all of a sudden it happened: visual aura.

It was a bit gradual--at first I just said, "oh no, something is off. I can see but I can't." The squiggly lines or tunnel vision or one-sided blindness (those are my particular visual auras that occur--my brother describes his as a donut, so they vary) hadn't happened yet, it was just a vague partial blindness. I quickly finished what I needed to help him with and then moved into fixing the toilet, my next project. By then the squiggly lines happened. Zig zags of light streaking through my right-side's vision. I didn't finish fixing the toilet (at least it is the third bathroom and not the only-so it can wait!), though the zigzags of light only lasted fifteen or so minutes.

I am out of my abortive medicine and I always get uncomfortable taking prednisone with heavy duty drugs anyway, since prednisone is a heavy duty drug already. 40 mg is no small dosage for the day. My brother takes two tylonel and three advil when he gets his "donut" migraine and so I am trying that today.

My left side is starting to ache from the back of my skull to the eye, pouring down to the side of my head. The pounding is minimal so far. I hope it fades. One more week on prednisone.

I hate this. Mostly because we are celebrating Halloween tonight and I am hosting. I have an hour before I need to start cooking. My husband said right away, when I stated my vision was off, that we should cancel. I don't want to cancel! I know, I am whiny when I say this. It is just that, and you migraineurs understand I am sure, that I hate these headaches controling my life. I don't want them to win. Cancelling plans is bowing down. I don't want to bow. Not to pain.

So I am going to fake myself well today, the best I can. I will rest for a little while and then get up and go.

And I am desperately trying not to go to that place that questions why the hell I am getting these migraines again. One year. One year it has been since I have had to deal with these regularly. Why now? No--not going there.

I really do hate this.

Signed,
Control Freak.

trying not to worry

I think we migraineurs may have something in common: worry.

Worry about Is this migraine going to last for the rest of my life? (okay, maybe not that bad, but still, sometimes the pain makes me go for the drama.)

Worry about I have an important day on Saturday (or fill in the blank for some major life event, holiday, vacation--heaven forbid you have migraines on vacation!). I hope I don't get a migraine. That would ruin the day.

Worry about treatment. If the next latest and greatest treatment is going to work or not. Or if it does, what are the side effects?

Worry about how your headaches get in the way of living your life. The demands of a breadwinner, missing work. The demands of a mother (or father), missing out on the joys that parenthood can and does bring; but if you are on your bed, or even just in a bad mood trying to cope with the pain, you miss out.

Worry even about how people perceive you. I hate this one. We should not worry about how people think of us. But there it is, I do. I don't even like people knowing I have a headache. I don't like their pity-I feel that it weakens me somehow. Don't tell me how bad my life is--I am trying to look at my life as a positive one. You are only reminding me that perhaps I should be in bed, when in all actuality, I have to make dinner, bathe the children, do laundry and help with homework. I can't stop!

So life with migraines can be full of worry. And worrying really doesn't do anybody any good. It isn't productive in any shape or form. And for me, it makes me wrinkle up my left eyebrow--and that, my fellow friends-in-pain, is starting to form a permanent line!

You'll have to forgive me: I'm in full swing of being in my thirties and becoming all too aware of my imminent aging process. The other night I asked my husband if he thought it would be crazy if, someday, I had botox injections on my face. He thought I was a bit ridiculous, I think, and suggested that I age gracefully, accepting the lines. Perhaps he doesn't know just how vain I am?

So to my worry, right now:

I haven't had a horrible time with migraines in over a year. (No--I'm not worried about that; trust me, I'm getting to it.) I had a big migraine one week after my miscarriage this spring. I treated it with prednisone on day three and over time, it went away. Since then I only had one migraine on the second day of my period. Easy, right? One migraine a month is cake with delicious frosting. It is so easy to deal with.

My period started last week on Sunday evening. On Tuesday, day two, like clockwork my period was heavier and I had a migraine. I expected that. I didn't expect to have a migraine every day after that. So on Friday I figured it would go away when my period went away; that used to be very normal for me, when my migraines slowed down to just half the month or less. It ended on Saturday. I had a headache that night, but only for a few hours, and it wasn't that bad. Then on Sunday I had head pain, but again, wasn't too bad. Monday: headache. This morning (Tuesday): headache. NOT GOOD! This head pain/migraine (I hate calling them that for some reason, like I am admitting to defeat...) isn't going away.

So I saw a doctor today. Not a neurologist (I moved and haven't had bad enough migraines to necessitate a neurologist--if this persists, I will get back on the neurology wagon), but my OB/GYN. Great doctor. Smart. I trust him. He gave me my prednisone taper and I have started it.

I know that the taper will work. It has never failed me. I don't worry about this migraine.

But I do worry about the next. How close will it be? Am I going to start slowly getting worse, like I used to be? It brings me to horrible self-pitying tears to think that I have to go back there. To that life where everything is about my pain. My head. My nausea. My dizzy spells. My fatigue. My medication refills. My worry. And most horrible: my worrying and the depression it brings on.

I have started running. That helps with my normal worries and I hope it will help with my migraine-worries. I am hoping it helps with the irritability I feel when using prednisone. A good run always seems to clear my mind and relax me.

I just have to have faith in my abilities to be proactive about the pain, not letting it control me, but taking control of it and killing it when it lasts more than three days.

To the void out there, maybe reading this because you are searching desperately on the Internet for answers to your pain and your worries: I hope you find what you need to eliminate the pain, or at least cope well with it.

And...uh...try not to worry...

A Migraine

I suppose I should mention (since I never write on this blog anymore since my migraines haven't been much in my life --I don't mean to sound like I'm bragging, I promise!) that I had a migraine.

When I became pregnant early this spring I had a few migraines--though they were nothing, really; but they were more than usual. When I moved to a different state, quitting a job that was very stressful and going to no job, my headaches went away except for just a few a month. So for me, just a few a month is nothing. Even once a week is like nothing, really.

But anyway! Back to the pregnancy: just a few headaches.

Then I had a miscarriage. I was just short of eight weeks when I miscarried the baby. After delivering the baby and placenta on my own (no need for a D&C, I was so grateful!), I bled for just one week.

The day after I stopped the bleeding was a Sunday. It was also Day 1 of a serious migraine. It lasted and lasted and lasted until Wednesday morning I knew it was a beasty one. So I didn't fool around: I went to my midwife and asked her to prescribe me a 12-day tapering course of Prednisone, starting at 60mg the first day and decreasing 5mg a day until the last day of just one 5mg pill.

I started that morning (always good to start prednisone in the morning, especially if you're taking 60mg, so that there might be a chance to sleep that night!). After ten days, yes TEN days (!) of the taper, my headache finally went away.

I firmly believe, based on previous migraines, and in particular, previous unmedicated-with-prednisone migraines, that the beasty migraine I started after the miscarriage would have lasted months, bringing me into the cycle of migraines I started on that fateful day of July 21, 2007.

Instead, the migraine was controlled after ten days of the dose and I didn't have any further migraines.

Yes, I have had a few headaches this week, since my menstual cycle begins sometime soon. I usually get some shoulder/neck spasms around now, and headaches that go along with them; but nothing out of the ordinary.

I am grateful for Prednisone. Nothing else works for me. It is a beast to take (irritability, hunger, restless sleep at night) but it stops the cycle that my body gets into and gets me back to life quickly. May I not ever have to take Prednisone again; but if I have another Beasty (my nickname now for the long unrelenting days-and-days-on-end headpain, nausea, vertigo): give me Prednisone!

It's been a while...

My headaches have been a lesser part of my life these past few months. I've been in a predictable rhythm now, with one or two when I ovulate and two or three during my period. That is very doable. Would I like to have none? yes, of course. But does life have pain? yes, of course. I'm at peace with them, do not fear them, and don't think about them much anymore.

I'm off the B-2, Co-Q10 and Butterbur for over a month now. I did this because I want to become pregnant soon and my neurologist said I can't take them during that. Not much difference. I'm not sure if I'll ever use them again. I have a whole lot of them left if anybody wants to have them...

I'm thinking my body got back to normal by itself. Though the neck exercises, I believe, made the biggest difference. My husband thinks that the reason for my major start on these was my neck in the first place. I argue that it was my menstrual cycle being funny (I think I was anovulatory for several months and finally everything became normal with the cycle and it shocked my body). Maybe both?

I had been reading the seventh Harry Potter book from Saturday morning (Friday night, depending on how you look at it) at midnight through Saturday and finishing it Sunday morning. Well the next day, Monday, was when I had my first vertigo-migraine episode. But it was also the first day of my period. Neck in a bad position for two days (I'm a nerd to read that much, I know), with little sleep, and then finally a normal period...a recipe for disaster, I guess.

It's been almost two and a half years since the start of these migraines. I'm looking forward to becoming pregnant soon, and hope that I'll have a break from the headaches for a while. I had one migraine (with visual aura) in my first trimester with my first pregnancy. None after that and none with my second pregnancy. It wasn't until four years after that first pregnancy when this whole mess started. I wonder if the hormone change at post-partem will start the migraines up again. Though I know a woman who had horrible migraines for years and then when she had her two daughters, she never had them again.

There is just no way to know, no reason to worry, because nothing can be done to prevent in that scenario.

I'm just at ease knowing that I know several different things to do to cope with the pain, deal with the nausea and dizziness, and perhaps treat them...

Ovulatory Migraines

Again, warning: writing about the menstrual cycle and it's connection to my migraines.

So last month I had a few migraines when I ovulated, as usual.

Then, during my period, I had no migraines.

Now this week, while ovulating, I've had a few migraines. At first (and a little, still) I was disappointed about having a migraine at all. I got my hopes up that if I didn't have a migraine during my period, then perhaps I wouldn't have one when ovulating.

No such luck; but I take heart that it is cyclic and not without predictability. After all, one of the difficult things about migraines (besides the pain, vomiting, fatigue, etc.) is that they strike without warning, and with much interruption to life's demands. If my migraines are down to just the hormone changes at ovulation, and not during the period, I can plan for those somewhat.

I just wonder what it will be for me when we try for a baby. I won't be able to use any of the preventive supplements I am currently taking. I'm worried about this but I know that I can deal with them, it's just not easy.

As for when I am pregnant, I cannot use the abortive drug I use now, either. My neurologist said that the pain is then controlled with narcotics. I have small children, so narcotics are out of the question for me unless my husband is home. If I am fortunate enough to become pregnant I will just have to deal with these pesky (understatement!) migraines, day-to-day, the way I've been doing.

Another thing for me to keep in mind, is that perhaps my migraines will go away, or decrease significantly while pregnant because of the hormonal change. ...though it could go the other way and they could become worse. But I will hope for the best.