My New Migraine Specialist!

When I see a new doctor, I try very hard not to get my hopes up too high because, usually I am let down.

This was not the case with the Migriane Specialist I saw yesterday. Dr. Mascellino was wonderful! She is taking me off the Lexapro - she was excited to see that I wanted to try Zonegran, since I'd done well on Topamax for a little over a year. So, once I can get to the pharmacy, I'll be starting Zonegran! Of course - even though I had called the other neuro's office that I had been seeing for about a year like 3 times before this appointment to make sure they sent over my records - they, of course had not.

She called over and got everything faxed over while I was there so she could review what had been done previously - it took two calls because the first they only send old neruo's office notes and did not include the lab work I'd had. So the next call was for them to send the REST of my file.So - full neuro work up and here is what we are doing:

Tapering off Lexapro and starting Zonegran - which can be done at the same time. (She said tryciclics and anti depressants are not her fist line of prevention - and are a last resort.) She also said no Verapamil for me since I had a hard time with Inderal, and although they are different classes of drugs, with my BP on a normal/low - she didn't want to go that way.

We are keeping the Frova, Xanax and Zanaflex since they all work like a charm for me. She switched my rescue from Vicodin to Vicoprofen? I am not too familiar with that one, but it is the same strength as the Vicodin with a different make up. I had stressed my concern w/ MOH which I usually get from Acetaminophen.

She is adding in Parafon Forte for my TTH as needed and also ordered all new blood work with metabolic work up, check my vitamin D since I've been taking 1000 IU since June. She also ordered MRI's, MRA's with and without contrast. I will be doing that later, once they are precerted.

All in all - I really like her! She was surprised that I had tried so little as far as preventives, seeing as I've been going to a neurologist in some form or another for 10 years. She said "don't worry - there are soooo many more we can try!!" (That's when I pulled out Migraine Preventive Options: Too Many To Give Up! and said, "Yes, I know!" She loved the list! I don't know if she is familiar with My Migraine Connection, but when I see her next month I'm going to pass it along to her.

She is also the first doctor to want to COPY my Migraine and Headache diary which is wonderful because having it in my file and looking at it is a heck of a lot better then skimming it for a second like all the others did, if they even cared!

Shawn came with me and thought she was good too. I was happy he was there, because he brought up things I forgot about. Also, it was great to have her ask if during my Migraines I get weakness or tinging - she was checking to see if I had Hemiplegic Migraine which was great, since I don't think any of the other doctors I'd seen previously ever asked! They also never ordered any testing what so ever - I had to request blood work with my last neuro.I think that is about it!

She is really nice and does know her stuff! I was really impressed considering I had not heard of her before.So, she wants to see me in a month, just to touch base and see how I am doing with the Zonegran. I think that is great too!

So we will see how it goes! I will keep you posted once I get my testing all done.

One heck of a week....

Just a little update here.

Up until now, I've been pretty lucky. I have been averaging about one migraine every sixteen days. This has been my pattern since January, when Dr. Greene put me on the Amitriptyline, which was added to my Topamax.

Well - this week has just proven to me that I can still take a step backward.

"Just when you thought it was safe to go back in the water." (for those of you who don't know, this is the famous tag line from JAWS, which is one of my all time favorite "horror" movies and the reason I don't swim in the ocean)

I had three - yes three, migraines this week, including today - right now. The first two this week started out at tension headaches that I could not get rid of with my normal Skelaxin, and then went into a migraine. After I took a Frova on both of these occasions, Mr. Migraine went away.

Today was a different story.

It started out very small and quiet. I thought, "oh, no big deal, I'll throw some Skelaxin at it while it's at a 0/1 and I'll be good to go". Well that didn't help so an hour later I ended up taking a Frova.

The Frova knocked the pain down from it's then 4 to about a 2, but the throbbing in my left eye was still there and reminded me every time I moved. Along with the oh so lovely nausea. Thank God I had learned earlier in the week from my girl MJ (see her blog at Rhymes with Migraine ) had mentioned something about how Ginger Altoids help her....low and behold we had them in the kitchen at work! So I ate my weight in them today.....

I get home and Mr. Migraine is still alive and kicking. I end up resorting to my rescue drug, Vicodin. I only take half tabs because of course, the whole pill will make me nauseous. So I had a half and was good for about 3 hours, now I feel it creeping back up again. Oh what fun it is!

I really can't think of what caused this sudden spike in migraine activity, except the change in the weather. Everything here in good 'ol New Jersey is in full bloom, although I don't seem to be having any allergy symptoms.

Oh well. Ya win some, ya lose some.

If this keeps up next week, I'm definitely going to call my neuro and see if I can get in a litter sooner then my scheduled appointment in July.

I hope the rest of you out there in migraine land had a better week then I did!!!!
Enjoy the weekend!!!!

The honest to god truth....what I put in my body everyday.

So I thought it would be good to let my readers know exactly what I take everyday, for those maybe not as familiar with Migraine Disease. Yes, at age 30 I have over 5 scripts and take a total of I think 10 pills a day. Here we go:

A.M.
Topamax - 25mgs
Multi Vitamin
Magnesium - 650 mgs
Calcium - 1000 mgs

P.M.
Topamax - 50mgs
Amitriptyline - 20 mgs
Melatonin - 5mgs
Jolessa - one every night

And on an as needed basis:
Frova -2.5 mgs, allowed up to 3 pills per day if needed - but not more then 3 times a week or may lead to Medication Overuse Headache
Skelaxin - 600 mgs - as needed up to 4 a day for Tension Type Headaches
Tigan - 400mgs as needed for nausea
Vicodin - 500mgs (I split them in half) as needed for Rescue

Yep, so I think that's about it, and that's not to mention the vitamin C that I take to help my TTH's go away faster.....

So although you may think by looking at me "You don't look sick" - remember to not judge a book by it's cover. I sometimes feel like a slave to the drugs that I take. If I don't take them, I get very sick. If I take to many of them, I can get very sick. It's quite the balancing act us migraneurs play.

So this was just a little peak into my world. I don't think I've actually ever broken it down before. Wow!

Migraine Haiku

Frova please save me

From my misery and pain

Go away migraine!

What you do when it all comes crashing down.

So I had a great run this time. I went 17 days migraine free. I was not even done with my "migraine euphoria" post yesterday when I felt the beast start to dig it's claws into my head.

I have to say, it was not as bad as I thought it would be, head wise....but the nausea - oh man - all day long!

The one this I was really upset about was I actually had plans last night - yes, me - LEAVING THE HOUSE plans!!! Shawn and I still went out....my migraine had calmed down by then, but I still had the side effect of my postdrome.

Ok raise your had if your flesh aches after taking Frova!!! I swear it is the strangest side effect ever for me, I can take it considering that the Frova attacks my head and knocks out that migraine in a matter of an hour, but why does all of my flesh hurt after????

Sounds strange right?? It used to just be the back of my arms ached - now I noticed it's all over that I ache after taking it. I used to only get achy if I had to take two doses, now I notice it on one.

Please dear God don't make the Frova stop working!!! That is my biggest fear!!!! I can take the flesh pain!!! Yeah, all of my skin, and under it like the meat on my body aches when I touch it....I don't know...it's gone today and so is the migraine so I'm happy about that.

Ok, well onto some other exciting things. Yes, I'm going to plug some of my friends here so consider yourself warned!!!

We went to see our friends Insouciant Play last night - you guys please check them out - they are really good!!!! We had such a great time!!!

Also - My husbands band Annoying Customer is going to be heading into the studio to do some recording next weekend!!! Yippee!!!! I am so excited about this!!! Check them out too!!! I am especially fond of their new song "Mongoose"!!!! So please take a listen to both of them!!!

And last but certainly not least - we have Daina over at Somebody Heal Me Who announced her blog carnival yesterday!!! So for all who are interested please check out her site for details. The topic this time around is "strategies for coping with headaches and migraines". The deadline on this is midnight April 11, 2008 - so if you are interested, please go check her blog out for more info.

Ok kids, that about wraps it up for today!!!

Until next time - take care of yourself and be kind to each other.

Migraine Euphoria - love it or hate it?

Let me explain for those who don't have the pleasure of experiencing this. I think that I only know one Migraineur besides myself that gets this and that is my friend Heather, (please visit her blog The Journey of a Migraineur )

Ok so Migraine euphoria aka waiting for the other shoe to drop. It's when a couple days before a horrible migraine, I get extremely happy, euphoric, crazy, etc. I feel like jumping out of my skin, act like a freak, talk a mile a minute (ok, well that's normal), clean, clean, clean - jump around, dance and feel like my skin is buzzing.



This is both a blessing and a curse.



It reminds me of the days of "what the hell is a migraine??" Back before my life was turned inside out by this disease that I now feel I have to watch everything I do for the potential ramifications. I feel carefree and happy.



The down side is - this usually means a big mother is on the horizon. I very rarely get this way, but when I do - a big one is lurking around the corner.



So what do I do? Enjoy it? Take it for what it is? Analyze every second of it, waiting for it to stop and the pain to begin?



I used to almost force myself into a depression over it, knowing this is not a good sign. Now, this time around, I've had this feeling for 3 days. Maybe it's just that I am in a good place, I've been migraine free for I think 17 days now - (woohoo!!!). Maybe it's just that I'm finally feeling good.....am I waiting for something that won't come?



My usual prodrome protocol is nausea or heartburn, increased visual floaters, tinnitus, smells, sometimes hearing things. I have had none of this, well a little tinnitus, but that is about it. So am I over reacting? I don't know.



I've decided to just ride it out and enjoy feeling good.



At the first sight of pain though - I am popping a Frova as fast as I can get it out of it's stupid packaging!



Till then - Take care of yourself and be kind to each other.

Went to the neuro today and....

Everything went great! My migraines are improving. I've had less this month then in the previous 6 months!!

We discussed options, and since this new Topamax/Amitriptyline combo seems to be working right now, we are not going to mess with it. We may increase the Topamax a bit, but only another 25mgs.

He gave me samples of almost everything I take! Skelaxin, Frova, and Topamax! He refilled my Skelaxin, he felt since I am not taking it as often, since I've tried to cut back, and also since I am getting less tension headaches, that since it works, don't mess with it.

That is pretty much it. It was a good visit. Nothing new though. We are keeping everything as it is.

I did discuss sleep with him. He said he didn't want to prescribe me anything right now, since my migraines are improving, let's see how I am the next visit and if it's still a problem, we will go from there.

So I have no complaints - me, not complaining - imagine that!

Oh the holidays

So this holiday season was rough on me, migraine wise at least. I had a bad run from the Saturday before Christmas till, well, I may still be in it!

I think I have had my worst migraine ever. It started this past Saturday. I awoke with it at 6 a.m. and it just didn't stop. It lasted all day Saturday, Sunday and finally broke on Monday, right before it would be considered Status Migrainous.

For those of you unfamiliar with Status Migrainous, its when a migraine attack lasts longer then 72 hours. This is with not counting while you are sleeping. If there is less then 4 hours pain free during that time frame, then you are in Status Migrainous. It increases your risk for stroke. You should at this point, call your doctor or seek attention at the ER or IMCC.

Most of the time, the ER can give you DHE injection, magnesium sulfate IV, Toderal, or narcotics. I personally advise against the narcotics approach and would say up front that I wish to NOT be treated with narcotics.

See, a big problem migrainuers face is that drug seekers use "migraines" and "back pain" as a way to score narcotics from the ER. So, that being said, sometimes, you may run into some resistance from the ER staff. If you say up front you'd rather not have narcotics, this may get you treatment faster and the help you need without the glaring eye.

My pain finally went away - just in the nick of time. I had to take 3 Frova over the course of 3 days, Skelaxin and I think maybe there was some advil in there too. I also took Tigan for nausea which was horrid!!!!

I hope that is as bad as it ever gets, and I never have to go through it again.

I did, however, make an appointment with a new Neurologist, which is on 1/22/08. I am also trying to get into a headache clinic and I am awaiting a call back from them.

I had a mild - I say mild because compaired to the last one, this was a walk in the park! - migraine today. I think one Frova and two Skelaxin seems to have done the trick.

Let's hope this is the last of it and I get some pain free days for a while! That would be nice!

Ugh - Monday!

So, It's Monday - after a nice long weekend and I'm tired! I can already feel my head throbbing. It's up the left side of my neck and into my left eye. I was in to work about an hour and a half before anyone else. I thought if no one else showed up I would leave, but alas, they did.

My aunt is doing ok. The doctors found nothing after her turkey day fiasco. She stayed in the hospital till Friday evening. It's just so strange.

I think it is going to be a Frova day today. That and positive thinking. It's a gross, rainy NJ day out there. My migraine is probably weather triggered. That's all I can come up with at the moment. I'd much rather be here:




But for now - I'll sit here in dark glasses, try to go unnoticed and down a Frova.