Day 38

Sorry I haven’t updated much lately!

Life has been very busy and I’ve been focusing on my job. All last week I had a cold and had to stop working out for a while. And of course, stuck with my grumpy old cold, I cheated on my diet quite a bit and ate out a lot so I’ve been having quite a few headaches lately. I’ve already blown through most of my immitrex and it’s only March 3rd.

But I guess the one good thing about all of this is that it does prove how important food is to my headache problem. I mean I showed myself that I DEFINITELY can’t handle pizza, or regular diet coke, or cheeseburgers even at nice restaurants.

So back I go to the grind. Organic only, no cheese, and no MSG. Not even a little.

On a completely different note, something totally weird happened last night. In addition to my awesome migraine problem I also have Temporal Lobe Epilepsy, which I never really talk about since it’s not nearly as much of a presence in my life as the migraines. I have a seizure (very mild ones) every 3 months or so. They’re so mild, if it ever happens around people, they usually don’t know it’s happening. But last night the one I had was pretty bad.

I got the deja-vu, the queazy stomach, the incredible vertigo, and the mixed up emotions like I always do– but suddenly I couldn’t move! My body had gone completely rigid and it was the most awful feeling! I tried to say my boyfriend’s name, since he was in the next room, but couldn’t talk- that was even WEIRDER. I remember sitting there thinking– “Okay this is going on way too long. They don’t usually last this long.”. Because I hate the way it feels. It feels like your body is feeling G-forces when it’s not. And then just suddenly, it all stopped. And I saw a little hot-air balloon floating around the room clear as day. So I thought, great. I’m having hallucinations now too.

I posted my experience on Yahoo Answers- seeing if anyone could tell me at least the type of seizure it was. (I usually have partial simple seizures) and everyone called me crazy!

Thank god for the epilepsy.com people. This site clarified that I’m still having simple partial seizures, just a more advanced form. If it happens again I might go back to my doctor. I can’t be locking up and freaking out at the office or something.

Motor seizures:

These cause a change in muscle activity. For example, a person may have abnormal movements such as jerking of a finger or stiffening of part of the body. These movements may spread, either staying on one side of the body (opposite the affected area of the brain) or extending to both sides. Other examples are weakness, which can even affect speech, and coordinated actions such as laughter or automatic hand movements. The person may or may not be aware of these movements.

Psychic seizures:

>These seizures change how people think, feel, or experience things. They may have problems with memory, garbled speech, an inability to find the right word, or trouble understanding spoken or written language. They may suddenly feel emotions like fear, depression, or happiness with no outside reason. Some may feel as though they are outside their body or may have feelings of déja vu (“I’ve been through this before”) or jamais vu (“This is new to me”— even though the setting is really familiar).

What are they like?

They are remarkably different from person to person, depending on the part of the brain where they begin. The one thing they all have in common is that the person remains alert and can remember what happens. Here are a couple of experiences:

• “I almost enjoy them. The feeling of déja vu, as if I’ve lived through this moment and I even know what’s going to be said next. Everything seems brighter and more alive.”
• “It is a pressure that starts in my stomach, then rises to my chest and throat. When it reaches my chest, I smell an unpleasant odor of something burnt. At the same time I feel anxious.”

Sometimes the seizure activity spreads to other parts of the brain, so another type of seizure follows the simple partial seizure. This can be a complex partial seizure or a secondarily generalized seizure.

* epilepsy.com

Day 26

Well I had a wonderful visit to the Mayo clinic today!

I’ve read, and believe, that doctors get frustrated with headache patients. 9 times out of 10 we come in and have bad news. That our headaches are getting worse and we don’t know why. Usually the doctor doesn’t know why either, and it’s all one big unhappy visit.

This time I was ready. I’ve taken an active role in trying to control my problem, and at the very least doing a better job of documenting it. I came in with 2 months outlined in a detailed calendar, and a complete list of my medications. (which my ultimate goal is to get off of)

Although the last 6 months have been the worst ever, I have hope that things are getting better.

So for 26 days I have yet to have a crushing, emergency level migraine.

However, I still have issues with daily head pressure and the occasional, annoying headache. So my neurologist suggested upping the dosage of Tomipax– as headache patients can go up to 200mg a day without damaging themselves (and birth control). This is nothing compared to what epilepsy patients take– which can go up to 400mg or even 600mg, so the threshold of what the human body can take of this stuff is actually pretty high. But I only need to go up to 200mg.

So I’ll start with taking 50mg in the morning and 100mg at night. 150mg total daily.

Topimirate is the best migraine preventative on the market right now and I believe it. I was without headaches AND migraines for a whole year before my chemistry changed and they came back.

He said I was doing everything right. Stick with the diet and exercise. Get enough sleep and stay away from alcohol. Some day soon I hope to get my headaches under control, and then I can finally get off of all this medication.

Day 22

Ugh. Stuck at work with a rebound headache.

It’s hard not to take anything. It’s on the left side of my head and ebbs in and out of severity and it’s really annoying. (hasn’t breached the emergency level of a migraine tho). I get to see my neurologist on Thursday, it’ll be interesting to see what he says.

Got a note in the mail saying my internist, who I really like, is not at my local dr.’s office anymore. No word on where she’s moving to– so that’s kind of disconcerting.

Just need to be strong and make it through today.

Day 21

Happy Valentine’s Day everyone!

This weekend has been nice but tough on the head! My boyfriend surprised me on Friday with a night at the nicest hotel in town (One Ocean) for valentine’s day. I was so excited and so thrilled– but bless his heart he forgot to bring my pill box to the hotel haha! I figured one night without the nightly regimen wouldn’t hurt (and it really is fine), but it did make things a little harder than usual when it came to fighting off the weekend headache.

I had some Ibuprofen with me, so I took that. And some Immitrex because we had a big thunderstorm that night. Didn’t sleep very well so I ended up taking another Ibuprofen that morning for the headache I woke up with.

Now it’s Sunday and I’m keeping a watch on the first “bad” level headache I’ve had in 21 days. If it gets any worse than this I would definitely characterize it as a migraine– but I know I mostly brought it on myself. We ate out a lot this weekend and had some champagne in the hotel room. Just need to eat well this week and keep exercising.

Took some Maxalt, Ibuprofen — and then that didn’t work, the “Phenagrin-like” pill I brought home from the hospital + a benadryl (as directed). Hope it works. I hate taking all these pills.

Just to note, I also ran out of Immitrex this weekend. Still 9 short of the 30 day mark for insurance. Maybe next time!

Day 15

I am flabergasted.

I haven’t had a horrible, crippling migraine in 15 days! I still get occasional annoying little headaches. They might be caused by tapering off the Ibuprofen and caffeine. We’ve also had some storms come through Florida as of late (this isn’t really a great place to live if you’re sensitive to weather changes, but hell– I love my boyfriend).

I think the major contributor has been my diet. I used to eat like a college kid (well I am a recent graduate). Pizza, fast food, quick grabs on the way home. Greasy things. Cutting those out really seems to have made a difference! Drinking more water, cutting out alcohol and caffeine. Eating simpler things. And exercising more. I just go into my own little world and before I know it, it’s been an hour on the eliptical.

Oddly enough though– I still know when a migraine is coming on. I can feel it behind my eyes when they move and know when to take an immitrex. So I’m 15 days into my insurance cycle and already down 5 pills. (usually I’m out by now).

The headaches are still happening, but they’re incredibly, incredibly less severe. I can live my life now.

I want to continue to press forward and strive toward my goal to be pill-free and healthy. I’ll continue to only take an ibuprofen every 3 days (at the most), and stick with my diet and exercise. Meeting with the Mayo Clinic neurologist in 10 days! Can’t wait to hear what he says.

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For those of you at home, here’s my medication plan if you’d like to compare to yours:

Morning:

30mg Calcium Blocker (Deltiazym- can’t spell lol)

25mg Topamax

1 Sudafed (for daily head pressure

Night:

30mg Calcium Blocker (migraine preventative)

100mg Topamax (migraine preventative)

25mg Amatryptaline (helps with sleep and is anti-headache)

Birth Control (Seasonalle- totally recommend it)

10mg Claritin (for sinus pressure)

1 Prenatal Vitamin (recommended for taking with Calcium Blockers)

Day 8

Feeling much better now. I went to visit my internist on Friday, and she had some valuable insight as to what is going on with me.

She said she agreed that I need to stop taking so much medication. The topamax, calcium blockers, amitryptaline, claritin, ibuprofen, immitrex– “that’s drama”, were her words. No person’s body should have to process that many chemicals. But unfortunately, I’ve trained mine to do so. And gotten it used to it. So when I stopped cold turkey last week, everything went haywire and I was smacked with a killer headache that was ER worthy.

I had the right idea, she said. But my mistake was that I didn’t taper off.

I think I successfully made it through the worst parts of caffeine withdrawl already, but after being a daily user of ibuprofen and frequent user of immetrex (9 pills in 15 days), I do need to be careful with tapering off those. Oh and let me clarify. You cannot get addicted to ibuprofen and immitrex. I’m talking about a cycle of rebound headaches that are caused by overly frequent use of pain-killers that cause the blood vessels in your head to over-compensate and swell (pain) instead of go back to their original size when the ibuprofen wears off.

So I’ve been on my new diet for a week now. NO MIGRAINES. Usually I’m down 3 immitrex by now.

I have a plan to taper off the ibuprofen, and keep exercising regularly.

I hope this is the start of a bright new year.

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EDIT: Yeep, spoke a little soon. Last night and today the temperature dropped over ten degrees and a storm moved in. I felt a migraine coming on just as the skies got dark, and thought to take an immitrex near the end of the work day. I’m happy to say it WORKED! There was a time when my immitrex wasn’t working anymore due to the cycle of rebound headaches.

Had steak tacos for dinner, and now I’m off to work out!

Day 3

Bleh. I have a headache today. Not a migraine but the annoying kind that aches and puts me in a bad mood.

I’ve been stressed at work lately, in kind of a “can’t do anything right” funk, and tired. I tried cutting the ametryptaline out of my nightly regamine (my neurologist prescribed it to help with sleeping) and apparently I do need it. I wake up at least 10 times a night without it.

And, despite my hatred for pills, I’ve taken 2 Ibuprofen for the last 3 days (because I keep waking up with pressure that feels like it could turn into a migraine). My recent brush with the Emergency Room kind of scared me. I don’t want to feel that kind of pain again. Ever.

The diet is going pretty well. I’m trying my best to stick to foods that don’t have migraine triggers. The hardest thing to avoid is MSG. It is in EVERTHING! Even good, healthy, and organic things. I almost wish there was a Jenny-Craig-like migraine diet out there where someone would just send you the safe food and you didn’t have to think about it.

I feel like Dr. David would frown on me for still refilling my immitrex and holding onto this ibuprofen. But what am I supposed to do if I serious migraine develops and stays developed the way it did last weekend? Looking forward to my internist appointment this weekend and the neuro appointment in mid february.

Day 1

Yesterday, Sunday, was the day after I went to the emergency room for the worst migraine I ever had.

It felt so STRANGE to be up and walking around without pain. In fact, it still does. But the first thing I did was go to the grocery store and get lots of foods that were on the “safe” list from my book. I’m a picky eater to begin with, so I thought this would be hard, but it’s really not. It just takes a little more time to read the labels and make sure there’s no MSG or aspertame in anything.

I was sad to hear I couldn’t have bread or cheese– but really, you can. As long as it’s really fresh bread, and really “young” cheese. I even found some cola with 0 sodium, 0 caffeine, and 0 aspartame! (Diet Rite Cola, sold in most grogery stores)

Today I started with a bagel and cream cheese, and I’m having a turkey sandwich with white american cheese for lunch. Maybe having organic rice  with eggs or pasta for dinner (I’m a big grain-eater. Always have been).

Hopefully this new diet can help me as much as it has other people and keep my migraines in check. I really don’t want to have another emergency room experience again.

The Emergency Room

Last night was definitely a low point.

Lately, I’ve been completely enthralled by this book by David Bucholz, M.D. It’s called “Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain”

As I’ve mentioned in previous posts, I am sick and tired of being so dependent upon PILLS to get me through my day. I’m not a pill popper, I don’t have an addiction, but when you’re constantly running from migraine pain, there is a certain amount of emotional dependency on medication. Truthfully though, it can’t be good for anyone to take tylenol and perscription painkillers (within their proper dosages) as often as I do.

Or did.

I’m going cold turkey and stopping the pill cycle. They’ve stopped working anyway, and there are better ways to get rid of a migraine– naturally. And it was ironic, that after I came to this conclusion, it turned out to be “Step 1″ in this headache book. Reducing pill taking frequency reduces rebound headaches, which I believe I’ve been having for months now.

So this Friday, like I do most weekends, I got a migraine.

It was somewhat bearable throughout the day, but pretty painful. It was hard not to rush and pop a few tylenol and an immitrex, although I know they wouldn’t work.

Saturday morning I woke up and it was WORSE. I tried everything. Icepacks. Taking a bath with icepacks. Massage. Walking around. Laying down. It was horrible. At 9:00 I was walking my dog and I just had it. It was Saturday night and I was being deprived of ANOTHER weekend. So I just started crying. When I got back upstairs to blow my nose, a ton of blood came out (which I’ve read, can be normal for migraines), though I’ve never had it happen. So I decided to take action.

When a migraine is THAT developed, no amount of immitrex, maxalt, or even muscle relaxers will stop it. If you’re ever in a situation like that, you need to see a doctor or go to the emergency room. They’ll either give you an injection, or an IV, but both are something of a “Migraine Cocktail” that contains multiple medications that work together to attack the pain. I’ve received one containing Amrix, Immitrex, and Phennigrin from my primary care doctor before– and last night I got an IV (which was good for fluids) that contained Bennadryl, Morphine, and Phennigrin.

It took about an hour for the IV to drain and I felt much better after. As directed, I went ahead and took some Ibuprofen and Maxalt when I got home, and I woke up this morning feeling GREAT!

I still believe in trying to avoid taking so many pills. I truly believe that I can control my migraines with my diet, once I get it going tomorrow. I’ll post what foods I’m getting and my progress.

This ER visit was unfortunate and rare. But if you are ever experiencing an incredibly bad migraine, know that you can go to any local emergency room, and they’ll be prepared to help you. They see people like us come in more than you think.

Wasted Weekends

Yikes, I’m really going to have to get my rear in gear over this migraine diet thing.

Yet another Sunday was completely wasted having a migraine. A REALLY bad one too. And all because on Saturday night, I decided to press my luck and have a few drinks– interspercing every vodka with a big glass of gatorade. I even went to bed sober (thus ensuring I would wake up hang-over free). But instead I woke up with a migraine that wouldn’t respond to any medication.

Actually that’s my biggest worry. That I’ve taken tylenol, immitrex, and muscle relaxers so often, that medication won’t even work on my migraines any more.

I think I need to give up my two great loves: Diet Coke and Diet Coke+Alcohol

Both seem to be huge triggers, and the fact that not even the most powerful medication is working anymore scares me. I’m going to start looking into more non-traditional methods too. Like aromatherapy, massage, and a complete change in my diet.

Just have to get thru this busy work week first!