Back by popular demand....well, maybe just back.

Wow! I have not written in a very long time. Too long....and probably too long to catch up in one post.

On the Migraine front, I am seeing a Migraine specialist in NJ. She is wonderful. I don't think I've blogged since I started seeing her. I forget and due to head pain this moment, I don't feel like reviewing my previous ramblings.

I have been taking Diamox as a preventive. It is a medication primarily prescribed for myopia, but is also used for weather triggered Migraines, and also, Intracranial Hypertension (IIH or PTC) which I have discussed before and convinced I have. I am really going to push my doctor during this weeks visit to order a lumbar puncture for me. I mean, if I'm willing to go through with it, what harm does it cause to order it? At least then I will know once and for all if I have IIH.

The Diamox is working quite well. I do have occasional tinglies in my feet and knee caps, but primarily in my hands. I get the tingles throughout the day, but it's nothing I can't handle. I mean, it has cut my frequency and severity of Migraine down to maybe 3 a month....and that is a high number. Before seeing Dr. M, I was having about 22-25 Migraines a month. This is HUGE!!!!

Currently, we are trying to see what we can do to decrease my tension headaches. I was taking Zanaflex for them, which was working pretty well, but now that I'm on the Diamox - for some reason my tolerance for Zanaflex has decreased. I used to be able to take 2 mgs. no problem.....keep working, driving, not tired, and no pain! Now, since the Diamox, if I take a 1/2 a Zanaflex - I can't stay awake at work. So, I try not to take it while working. I only take it once I am home for the evening. I also take it every night now which has helped my Migraine frequency as well.

As far as life in general.....I recently lost a friend I had reconnected with. She was really funny and I don't remember a time I spent with her when I was not laughing. Kim, the friend that passed, and Sandy, another friend of mine, where around a lot when I was in grade school and starting high school. Sandy lived with us for a while, and she was BFF's with Kim, which is how I met her.

The three of us ended up working at the local grocery store together....ran in the same circles....I was always the youngest and the tag along, although now the age difference is nothing. They are three years older than me, so at the time, they were in high school, and I was in 7th grade. Big difference when you are that age!

I remember that during this time my father had shared visitation with my mom. I would have to go to his house every other weekend and half the summer. This sucked for someone who wanted to go to school dances on the weekends and hang out with my friends. There were no kids up at my dads. It was pretty boring. Kim and Sandy were like my sisters during this time. With Sandy living with us, there was always someone around to hang out with, and with Kim, well, being Sandy's BFF, she was always at the house.

Kim would write to me when I went to my fathers over the summer. I will always remember that. It was pretty much Kim and my friend Emily who would keep in touch those six weeks, which in kid time, felt like FOREVER!!!! When I would come home, we would have ice cream and watch scary movies. I always wanted to know what was up in their love life, because they were older and I could live through them.....since I did not have a boyfriend.....I don't even know if I really even thought about boys all the much yet. I mean I did, but not as a boyfriend I don't think. I just thought they were cute.

I was so happy when the three of us recently reconnected on Facebook. I found out that both Kim and Sandy were married and had children. Sandy now lives where I pretty much spent my childhood, right around the corner from my BFF Emily's childhood home. Kim's family lives right across the street from me practically. Kim and I both got married at Modick park, in the Gazebo. Her husband works for the fire department for our town, and I work for the town at the pound. It was like coincidence after coincidence....except for the kids part! LOL

Kim and I had been trying to get together, since we lived so close. On July 3rd, I had taken the day off because the 4th is our anniversary. I know that Kim and her family hang out at the "Mud Hole" as they call it here, which is the community lake. Shawn and I were coming back from shopping and drove past the mud hole and I said "I wonder if Kim is down there". I was thinking of walking down after we put away groceries to see if she was there. I put away the groceries and went to lay down for a bit. I kept thinking I could hear someone calling my name from the mud hole. I would have sworn it was Kim.

I got up and checked my email, facebook, and all that and saw a status comment from Sandy saying that Kim had passed away that morning. I could not believe it. How? Why? Kim had just lost her mom to cancer on Easter Sunday, and now she is gone too? No...no. this can't be happening. I really did think it was a joke at first until I read other comments and posts from people. I couldn't believe it. She was only 35. Way too young.

Kim and Sandy were very influential in getting me away from my father. He was by no means a "dad". He definitely has/had some mental issues that needed to be addressed. Plus, by this time I had a boyfriend and didn't want to have to go to my fathers every other weekend. I wanted to be with my friends. They gave me the courage to stand up to him and say that I wanted to only go up there when I wanted to go up there and that was that. That was the last time I saw my father for a weekend. I think I saw him once or twice since then - but even so, that was over 13 or more years ago. He only used me to get back at my mom anyway, so it was a destructive relationship from the get go. Probably one of the best things I ever did was get away from him.

This got me to thinking of where I was in my life....where I had come from. Thinking back to where I was then and where I am now. Also, thinking back to another huge moment in my life, when my house was struck by lightening. It was three years ago this past 4th of July.

Since that time, I ended a toxic friendship. I had been "done wrong" by this person once before....fool me once, shame on you, fool me twice, shame on me. I started hearing a lot of things that this person was saying and doing (she was my roommate at the time when the fire happened) and it was not good for either of us to stay friends at that point, even if she didn't see it yet.

I moved in with Shawn, since he was my next door neighbor, renting the apartment on the other side of the house. We started dating pretty quickly and started looking for a home after only dating about 3 weeks! We both just knew. We moved out of that house at the very end of November of the same year - yes, just 4 months after the fire.

Two years ago, Shawn and I got married on the 4th. We just had our second anniversary. We will be together for three years on August 13th.

I am one of those people who just don't want to ever regret things in my life. I don't regret anything thus far, since it has made me who I am. I feel like my life has had so much suffering that Shawn is my prize for enduring it all. I really could not imagine my life without him now. It's hard for me to think of a time before him. We knew from the start that we were going to be together. We both just knew. I don't know how else to explain it. So, if I were to regret anything I did, or take any of it back.....it would not have led me down the same path. I would not have the friends that I have, the husband I have, the life I have. I'm not saying it's perfect by a long shot, but it's mine.

For some reason, I felt the need to get this all out today. I have felt very sad today. I have been thinking a lot about Kim and what she meant to me, and also of my sister in law, Becka, who passed three years ago now.

Death sucks. Losing people you love, sucks. It is even worse when the person is young and has so much more to live for and experience in life. It is almost easier when the person is older. Maybe easier is not the best word, but when someone has lived to an older age, it does not seem as much of a shock I guess. All the deaths that have happened lately, well, the last three years, have been of people that were taken way too early. It sucks. It just sucks.

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.

Drug holiday is OVER! I have a new preventive!!!

I went to my neurologist on Tuesday and also started a new preventive medication. I had given up on Topamax and Amitriptyline because of the side effects...and well, I was still getting an average of about 7 Migraines a month.

My new preventive is Inderal. Inderal is a Beta Blocker commonly prescribed for high blood pressure. It's also sometimes used after a heart attack.

I've been on the Inderal at 10 mgs a day, in a split dose (5mgs a.m./5mgs p.m.). So far, so good. The first night I think I freaked myself out. Being that I have a normal low blood pressure, I was nervous to try this drug, but my doctor put me at ease saying that at the first sign of it giving a bad side effect - I back it down.

I have to say, other then the first night, I am sleeping better now then I have in a long time. I don't know if it's the Inderal, since it can take up to 6 weeks to take affect, or if it's my own "placebo effect". I think it's working, therefore, it is.

Now, I sleep like the dead. This is a welcome side effect (if that is what it really is) since I had been waking frequently and not getting sound sleep.

Also, my doctor gave me a script for Zanaflex to be taken at the onset of any Tension Type Headaches.

The story with my Tension Headaches is that the only thing that would touch them was Vicodin. Originally, if I caught the headache in time, Skelaxin would ease the pain somewhat. That is no longer the case. I tried Midrin to no avail. So now I am on Zanaflex for them.

My doctor said we will, at first, treat with Zanaflex on an as needed basis, since I just started the Inderal. The reason for not starting me on Zanaflex as a preventive with the Inderal, is to see which drug is or is not working. Once we know the Inderal is (hopefully!!) working, then we can add the Zanaflex in as a preventive as well. That is, if my Tension Headaches are still frequent on the Inderal.

I also received my first script for a rescue medication, that being Vicodin. I had so much Vicodin left over from my shoulder dislocation last year, I have not had a need to ask for a rescue.

So, that's my story.

So far, since starting the Inderal on Tuesday evening, I have not had a Migraine. I have, however been having a new aura. My aura's usually consist of floaters that look like oil spots, or sometimes, little shooting stars. The last two days I've had a more defined aura in that I'm seeing half crescent zig zags just in my peripheral vision.

For those of you unfamiliar with aura, I found a great video on YouTube featuring Dr. Silberstein from the Jefferson University Hospital.


I should also mention - I got back my blood work results, and as I suspected, I was deficient in Vitamin D! Thank you again Dr. Krusz for bringing this possibility to my attention! I am now taking 400mgs of Vitamin D, along with all my other supplements.

For more information on Vitamin D, you can check out some great articles by Diana at Somebody Heal Me. I have linked her articles directly below:

Chronic Migraineurs Lack Vitamin D

Vitamin D Eases Chronic Pain

Also, if I am not mistaken, Teri Robert is or will be working on an article about Vitamin D as well. Once that is up, I will post the link here.