Sunday, January 27, 2008

New Neuro, New Med!

So Tuesday I finally got to see my new neurologist. I was excited and also, to be honest, a little ready for let down. This was now the 6th doctor I was going to see for my migraine disease. I guess the 6th time is a charm!

Compared to the other twits I've seen, this new doctor, from now on, I'll call him Dr. G, he actually LISTENED to me. TALKED to me and TREATED me like a human, on his level and the same planet he was from. Not like those "other" doctors who talked down to me and made me feel like I knew nothing about this disease I have. I've probably done more research on migraine disease in the past 3 years then these doctors have in their lives!

Anyway, I'm getting riled up. Back on topic. So Dr. G listened to me and says he thinks I have transformed migraines. And no, that's not when your migraine turns into a robot. It's usually from over using medication....or at least in 80% of the cases. But for me, it's not since I tend to under use it.

So Dr. G and I discuss options. We talk about the Topamax that I've been taking for about a year and a half now, and how it's not working anymore. We decide it's time to get off of it. But first, we are going to add in Amitriptyline on a low dose to get the transformed migraines under control. Then back off both the Topamax and the Amitriptyline.

Amitriptyline is a Tricylic antidepressant (TCA) and used in low doses, can be a good preventive for migraines.

I'm just concerned because one of the side effects, like the second one, is "may cause increased hunger....especially for sweets" Awesome! Just what I needed, and increased appetite for sweets! Why couldn't it be like "may cause you to want to eat salads all the time" or "may cause excessive urges to work out"....nope, this is going to make me want to sit down with Ben and Jerry and just chow!

Yes, I know - all side effects are potential, but you know this one is going to happen to me, since I'm the one who went to culinary school to learn how to make all those sweets!!!!!

I guess time will tell. I'm on my second day of 10mgs. of amitriptyline. I stay on that for 2 weeks and then I go up to 20mgs.

I hope it works. I am so done with feeling like crap. I had a migraine all day yesterday. And, since I've already maxed out my abortive for the week, I was on Vicodin all day, which did squat. All it did was make me loopy. I still couldn't sleep, the pain was still there, and I was just a zombie all day with what felt like a knife going through my skull!

Well that's about it for this round.

I just wanted to take a moment to remember my cousin Joanne who passed earlier this week. She was only 55. She had a brain tumor which the doctors said was inoperable. It all happened so fast.

Joanne never married or had any children.

I will remember her for her long black hair, her sarcastic humor (I think that's where I get it from!!!!), her love of the Yankees and her love and dedication to her family.

Joanne - even though we were not that close - you were my "cool cousin" and I will miss you terribly. You were taken way to early and I'm sorry that it had to happen that way. You will be missed.

Monday, January 14, 2008

Up and coming doctor visit

I had gone to see my primary doctor a month or so ago and she referred me to a new neurologist, since the last headache specialist I saw was, well, horrible (don't worry, I won't mention your name and ruin your career here).

Come to find out, he actually studied with my at the time neuro that I was leaving because she was no good. Makes sense now, right!

Anyway, so my primary referred me to this neuro and when we were having our holiday party at work, the doctor group that I work for mentioned him too! So now I am excited to see him. He seems to have a good name with the other doctors in the area which is awesome. The doctor group I work for says he is a pain in the butt, always wanting tests done yesterday.....which is great...they agreed.

My big question latley has been "Do I have IIH?" Which is Intercranial Hypertension, formerly called Psudotumor Cerebri. IIH is increased spinal fluid in the brain that the body cannot absorb. It causes pressure in the brain, which can lead to no trigger migraines. I have a lot of these! The only way to test for IIH is by a lumbar puncture. Supposidly this new neuro has no problems with that and orders them frequently. Other doctors, including "Mr. Headache Specialist" stated to me that if I didn't have papilladema, that I could not have IIH - FALSE! And he is a specialist! This is why I never went back!

So I am getting a list of questions ready for my hopefully new neurologist. I hope that he is good and that we can work well together. I feel like I've been through enough bad ones, it's time I get a good one for a change!!!!

Wish me luck! My appointment is on the 22nd!

Wednesday, January 2, 2008

Support for Migraineurs!!!

Since becoming a host on My Migraine Connection, I've become very involved in wanting to do SOMETHING, ANYTHING, to raise awareness and support for migraine sufferers. I don't care if it's handing out flyer's on the roadside, e-mails, what have you....I just know that I have to do it. Not only for myself, but for the family I've meet on the forum.

I admire Teri Robert so much for what she does every day for all of us. If I can do half of what she does, I would be happy.

Here are some statistics as to what lights my fire....aside from being the obvious sufferer.

*According to a study published in the April 1999 issue of the Archives of Internal Medicine, migraine costs American employers $13 billion per year due to missed work and reduced productivity.

*It is estimated that 157 million workdays are lost annually because of the pain and associated symptoms of migraine. (Source: National Headache Foundation)

*Most children who get migraines, have at least one close family member who suffers from migraines too. If a child has one parent who suffers from migraines, they have a 50% chance of getting them too, if both are sufferers, this rises to 75%.

*Migraine alone is the 12th most disabling disorder in the US.

With facts like that, we need more research! We need better treatment!

Now is the time to act!

Please visit Alliance for Headache Advocacy and sign up for emails. The site was put together by my friend, the lovely Miss Teri Robert , along with one of the top headache specialists, Dr. William B. Young, of the Jefferson Headache Center.

Also, see that little badge over there to your right? You'll find that on the Alliance for Headache Advocacy page too, I encourage you to click on it, it's your friend! Donate! Donations are as little as $10.00 and are tax deductible. The American Headache Society will even send you a nice letter thanking you for your donation! Please! Donate now and donate often! We are not even to the half way point to where we need to be.....$10, it's not a lot - you can do it!

Thank you all so much! Thank you for reading! Thank you for your support.

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!