a new (to me) resource: an oldie but goodie

As you may know, plans are in the works for me to open up my own indie bookstore some time next year. This is a frightening prospect but--for the most part--gives me a sense of excitement and purpose unlike anything I've felt in the last few years, at least as far as work goes. Yeehaw!

Part of my self-assigned duties involves my going to established independent bookstores and taking a look around; if a manager or owner is on duty, I introduce myself and have a little chat. It's been fun as the information people are willing to provide me is, in short, priceless.

While in Pittsburgh in July, my dad led me to a cozy, well-staffed radical bookstore in Bloomfield where I browsed the aisles in the hopes of finding something inexpensive and interesting to buy. (Even the smallest purchase helps the independent bookstores of the world, so consider shopping at these places if you want to keep .... okay. I'll get down from the soapbox. You can guess how I feel about this.) I purchased Illness as Metaphor by Susan Sontag, a piece I read--at least in part--in college. I also discovered a little book called Headache Survival while browsing the health section; it was only a few bucks and I made the investment.

Let me just tell you how much I already love this book. The author, Ivker, has been at the helm for a few books of this type (another one in his collection is Arthritis Survival; still another talks about sinusitis), which initially made me skeptical. I started reading the book a few weeks after buying it and am consistently surprised at how UN-annoyed I am with his tone. Many books that proclaim themselves to be potential cures for Migraine & other headache take this obnoxious tone, a sort of holier-than-thou feel that patronizes the reader and often makes him/her feel as if he/she would be just plain stupid to ignore the author's advice. This book does not fit in that category. Ivker is personable, friendly, and seems to genuinely want to help. He assures us that there is probably a way out there to make headaches better, but that no one method works for everyone and that it's extraordinarily difficult to figure out what pattern of treatment works for you. Unlike some who believe in so-called "alternative medicine," Ivker does not eschew the possibility that pharmaceutical treatments can help Migraine. In fact, he wants you to keep your traditional doctor informed all the way and include your prescription drugs as part of the treatment plan if they help you.

I haven't finished the book yet--I may never complete it, as in order to do what he recommends I'll need to use it as resource for many years to come. But I am enjoying reading it. For the first time in years, I feel a sense of optimism as I'm reading about recommended diets, treatments, exercises, etc. that have been known to help other migraineurs. Of course I carry along that die-hard Geddis skepticism, but that is tempered with a not so small part of me that thinks there's weight to what is being said, that I could be on the brink of major improvement.

I'll keep you posted.

tired of being tired

I'm so tired all the time. I've a sneaking suspicion this has to do with the weather, as pollen has permeated every breath I take for a couple of months now. When I'm not in the Georgia air, I am traveling--and traveling makes me tired, too.

When I first started taking Petadolex and rid myself of Zonegran, I was happily shocked at the energy boost I felt. "Wow," thought I, "turns out it's not normal to want to take a nap ALL THE TIME." I wanted to do things; I cleaned the house without complaint while blasting music or This American Life (my life's blood).

But recently I've become tired again. In the last week, I've attempted to go to bed at the same time each night and rise at the same time each morning. Maybe I'm getting too much sleep at once? (In a week I've not yet avoided my obnoxious pattern of waking up in the 3-5 AM range--grr.) I get up and at 'em and have even been getting exercise recently. Seems like the new me would be ready and rarin' to go.

But no. I just want to close my eyes. Is it working on the computer? Maybe, but not being on the computer doesn't guarantee wakefulness. Instead of my long walks resulting in an energy boost, I want to curl my sweaty self up on the couch and doze off for awhile. Driving makes me tired. Reading makes me tired. Walking makes me tired. Immobility makes me tired.

What to do?

Oh! One more thing. Maybe this nugget is my savior, the piece of the puzzle that will soon right itself and make it so I can live energetically again. I cut out caffeine completely about two weeks ago. I had cut down a lot and was only having caffeinated coffee when headachey or (in one case) slightly hungover. But after one cup I'd switch to decaf (a la my parents).

Now I'm clean, kids. I'M CLEAN! But I'm tired. The boost that caffeine provides is brief, I know, so having a cup of joe is not the solution.

I ingest six BILLION* pills of riboflavin (B2) each day and take my multivitamin in the morning. I have been eating breakfast, including delicious fruit smoothies and chock-full-o-goodness juices and snacks.

What gives? Does anyone see something obvious happening that would explain my sleepiness, my laziness? Am I missing the obvious or am I doomed to a sleepy existence forever!?

* or so it seems

herbal supplements, prescription assistance, etc.

Here's something I wrote in response to a query on a new health community site I love, http://www.wegohealth.com/
It's about the herbal supplements I've heard of as being TRULY helpful for Migraine, not just recommended by some person you ran into one time at the supermarket. Of course they're not helpful for all people, but it's worth a try!

************

My neurologist (who's pretty prominent) as well as many other acquaintances' doctors recommend a few different vitamins, minerals, and herbal supplements for migraine care.

1. Petadolex (a mixture of butterbur, B2, and perhaps one other thing--I forget what) is a daily supplement you take to help diminish the number of attacks and lessen the pain and side effects that accompany the attacks you do have. (http://www.migraineaid.com/) I buy mine through a shop on Amazon because it's cheaper there than anywhere else I've found.

2. Vitamin B2, about 400 mg/day. (This is approx. 23,000 the RDA--but that's the amount they recommend! Gives you wonderful energy.)

3. Magnesium, 500mg/day

Chamomile, mint, and feverfew are also frequently recommended.

As far as the expensive triptans go:

My doctor tells me that Imitrex will be going generic "later this year." Great news! I don't know the specific date. And look here to see if you qualify for prescription assistance programs--even if you have insurance you might be a candidate for one of the many programs offered! https://www.pparx.org/Intro.php

I can't recommend this program enough, and I've only heard back from one company so far! (Waiting for my doctor to sign the forms so I can start getting cheap to FREE meds!)

Take care, and good luck!

worst day in awhile...

I awoke this morning around 8 AM knowing I'd have a migraine soon. I made myself eat some breakfast, and I had a cup of tea (two teabags: one traditional black tea bag, one herbal peppermint tea bag) in the hopes that the smell would calm me and the caffeine would help. No such luck. Breakfast seemed to zap all the energy I had, and I took a nap for a couple of hours in the hopes of waking up refreshed.

In the evening, I got up to shower and begin my day at last. The vague pain and fatigue that had been bothering me all day set in completely--within five minutes of standing up and walking around my house, the pain was sharp behind my left eye and I decided to take some meds. I got a little desperate today and now have way too many things in my system: I took a Naproxen tablet this morning, had three Petadolex as an abortive measure (you can use P. as a preventive and/or an acute treatment), and eventually took my Relpax when I realized the other pills were doing nothing. Still no results. Last but not least I had one Lortab--this is my barely used last resort.

I didn't want to cancel my plans, so I went out with my friend. As we walked downtown, I said, "Wow--the lights on the buildings look so sharp and bright tonight. And beautiful. Don't you think so?" "I don't see that." "Really?" "Yeah. Oh, no! Does this mean you're getting a migraine?" "Oh, I already have one. I've had one all day."

An hour into our dinner all the medication seemed to hit at once. I felt the telltale tingle of the Lortab (followed by the itchiness that is an obnoxious side effect!) as I sipped the coffee I'd ordered, my vain last attempt to rid myself of the pain. It all helped at once and I had a great night despite all the foreign chemicals rushing through my veins. I really don't like being hopped up on meds, but the way I feel now is far superior than drifting painfully through that fog I waded through all day.

Goodnight.

a note to those who are considering Zonegran

I was just on MyMigraineConnection.com, perusing articles and looking up information on Zonegran withdrawal symptoms. To my chagrin, there's a general lack of specificity when it comes to lists of withdrawal symptoms. As the drug is prescribed off-label for Migraines (it's an epilepsy treatment), the medical websites all tend to point out that one should exercise caution while weaning off Zonegran due to increased risk of seizure and "other side effects--talk to your doctor."

So far my withdrawal process has been a lot easier than I'd expected. I'm halfway through and am sure my happiness with daily life has a great deal to do with my increased energy (a combination of getting off the energy-zapping Zonegran and getting all that B2 in my vitamins and my Petadolex, as I have mentioned before). Today I really took a turn for the worse, however, and hope hope hope it was just for one day.

Last night I went downtown with friends for a low-key night of chatting and carousing. Around 9:30 I decided to walk home, feeling a headache coming on. It was such a low-grade pain that I figured getting into bed early with a book and some chamomile tea would heal me right up. Boy, was I wrong. A raging Migraine headache took over within an hour of my arrival home. My stomach felt swirly but I was too nauseated to fetch a wastebasket to use as my emergency receptacle should I become sick to my stomach. (Luckily I didn't end up needing this option in the first place.)

This morning I woke up in a foul mood. A gray mood. A gray mood with fiery, jagged edges that caused me to lash out at everything from my boyfriend (who was suffering from a Migraine himself) to the dishes in the sink to the broom to my neglected plants. I. WAS. EXTRAORDINARILY. ANGRY. AND. BITTER. For no known reason. The closest I've come to such unreasonable anger would be in times of PMS, but I just finished my period, and this mood was far more sour and impossible to climb out of than any routine PMS funk.

What was I going through today? I see that agitation and irritability are side effects of Zonegran withdrawal; they can also accompany some people's postdrome stage, though feeling anger at this stage is infrequent for me.

In my rather fruitless search for Zonegran withdrawal symptoms, I did find a few pages on MyMigraineConnection.com on which people solicited the advice of others who may've tried Zonegran--what's our opinion of the drug as a Migraine treatment?

Here's my response. For those of you who read my blog frequently, you'll see nothing new. But it felt good to put it on paper--er, screen.

I have been on Zonegran for 22 months. The frequency, severity, and duration of my Migraine attacks decreased overall, but I still had super-duper Migraine months (especially during hot Augusts or stressful holiday times, for example) and was relying on my acute medication, Relpax, just as much as ever.

For me, the side effects of Zonegran far outweighed the positive. My doctor mentioned the possibility of some side effects, but both he and the drug literature mentioned that the effects would probably go away within 4-6 weeks. This was not the case for me. I lost a LOT of weight and the more bothersome side effects--memory loss, difficulty word-finding, near-constant fatigue, and simply a general feeling of dumbness!--were harder to pin down and took longer to emerge. I thought I was going nuts until I found a whole community of people out there who'd had the same things going on in their brains.

I'm now going through the withdrawal process and will be off Zonegran in three weeks. Petadolex is my new herbal drug of choice, and thus far it's working well!

happy days are here again

I don't know to what I owe this good fortune, but I have been feeling really well. Even when I have had a Migraine attack in the past month or so, its effects haven't lingered for days as they usually do. It's a strange and unfamiliar feeling, this sense of health and well being even one day after an attack. Usually I feel groggy and lethargic.

Is it the fact that I'm going off the Zonegran, a happy change I've documented numerous times on this blog? Is it that I'm anticipating a career change (though one marked with lots of stress that's far in the distance anyway)? Is it that I have Petadolex running through my system at all times, the butterbur and the extra B2 doing their work to make me feel well and energetic? As it is, I already take 400mg of B2 a day (that's over 23,000 times the RDA). There are 200mg in each Petadolex pill, so at 3 Petadolex capsules a day that means I'm having 1000mg of B2 each day! That probably has a lot to do with it, eh?

The great thing about Petadolex is that even if it's working due to a placebo effect, it's still making me feel good. And you don't need a prescription to get it, either, which makes me feel more powerful somehow. (No driving three miles late at night to dish out hundreds of bucks for a drug that pharmaceutical companies could make much less expensive if they only chose to.)

This entry is self-serving and rather pointless in most ways, but I would like to preserve it just to have a little snapshot of how great I feel. I wish the same for you.

In other news, this month's headache blog carnival posts in a few hours' time! I'll put a link to it here. (My entry was written last week, but there'll be MANY other people's I'm interested in reading.)

goodbye Zonegran, hello Petadolex: part 2

Tonight marks the night I'll go down to one 100mg pill of Zonegran a night. Two weeks from now, I'll have a two-week period of having one every other day.

Since early last week or so, I've been taking Petadolex three times a day. The box says it's been used in Europe for over 30 years. Hmmm...

I've not had a Migraine episode in eight days!!! What a glorious streak. Last week I did have two back to back with no obvious triggers--I'm not sure if that was related to my withdrawal or not.

So far the withdrawal process hasn't been too rough. I was thinking I would have some rough side effects. Granted, I have four plus weeks until my body gets used to not having Zonegran screwing with my brain chemistry, so who knows what'll happen next.

Fingers crossed!

Goodbye, Zonegran/Hello Petadolex!

Guess what, guess what, guess what?! I am officially weaning myself off Zonegran. My neurologist gave me a plan to follow and everything. I started on the drug in April 2006 and quickly worked my way up to 200mg/night. In October of 2006, my neurologist upped it to 300mg/night in the hopes of killing off more Migraine attacks.

It is now January 2008 and, after months of going back and forth about the issue, I've finally started the process of getting off the meds. This marks the second night in a row I'll be taking 200 mg/night instead of 300mg.

Here's the plan.

Up until now: 300mg/night before bed.
Then for two weeks: 200mg/night before bed
For two weeks after that: 100mg/night before bed
And for the two weeks after that?: 100mg every OTHER night before bed

And then I'll be done. Minor snafu? The doc didn't call in enough pills to the pharmacy to get me through all the weeks. I'll run out of pills during the last stage, right when I've almost got it beat. We shall deal with that when the time comes--a quick but annoying call to the neurologist's voicemail will clear that right up.

To complicate and [I sincerely hope!] improve things, I've been prescribed a new treatment, if "prescribe" is the accurate word here. My doctor is requesting (nay, ordering!) that I begin taking a new pill every day, but not one I need his signature for. What is this, you ask? Why, it's a little something called Petadolex. This herbal supplement has virtually no side effects, is relatively inexpensive (especially if you're starting from scratch sans insurance like me!), and is readily available on this here World Wide Web. There are actually verifiable scientific studies in which results show that Migraine frequency and intensity decreased in people using it daily. And my neurologist, one of the foremost experts in the field, is recommending that I take it.

So why didn't my doctor tell me about this long ago?

I fear that the answer lies in the well-founded fear that doctors are getting some pretty big payoffs from Big Pharma in exchange for pushing certain drugs to their patients. (I just stumbled across this article that describes how influential drug reps can be! Frightening.) This doesn't seem entirely true in my case, perhaps, since I was taking the generic form of Zonegran anyway--but I lasted the first four months of my drug therapy without needing one prescription from my local pharmacy. Why? Because my neurologist had tons (TONS!) of free samples to give me. While I was very grateful for this, I also find it off-putting to think of the millions of dollars and labor hours spent in order to get those sample packets into my hand. I fear that the motive isn't just to make me and others like me well. I think it may have to do with handouts, payouts, and some free vacations and dinners to boot. A friend of mine who's a pharmacist just went to a talk given by my aforementioned well-known neurologist--a talk about Topamax. "Why would he do such a think in his free time? You know he's got to be getting paid for it."

And I'm off on a little bit of a tangent. I'm really hoping that there's a good reason why I went through four preventative treatments, all of which had adverse side effects, all of which I told the doctor I was hesitant to go on, before he told me about this side-effect-free alternative therapy. I really hope that the reason has nothing to do with his being money-grubbing, 'cause I like him. I do.

Goodnight, and I hope you're feeling well!