Saturday, May 26, 2012

Approval Process

It’s time for me to jump onto the band wagon. This has meant I’ve needed to switch my reading around a little bit. Although I still need to catch up on my blog readings and want to finish up on the book everyone is talking about (the book that is turning everyone different shades of red), I’ve had to start doing all of my serious researching on Botox.

I have been approved and should receive my first treatments during my next doctor visit in about a week. I like to know exactly what to expect so I’m trying to read up on patient experiences, what to expect in the office, what to expect after leaving the office and even read through some of the interviews my doctor did while he was conducting research on Botox.

My doctor had mentioned Botox during my first two appointments, but I kind of dismissed it as I was not ready to try it yet.  However, before I went back to him for my third appointment, I knew there would be no choices and this would be the route we would be pursuing. I really was not in good shape during that visit as my speech was horrible because of the latest medication increases which made me even more frustrated than normal.

As he started filling out the Botox application form, I was getting out the medications I had tried and failed at in each of the five classes my insurance company listed even though they only required me failing three classes of medications. I guess it was team work by my doctor and me without us even talking about it.

I have to say that I think our Migraine community is awesome! I was hesitant about starting Botox with this office for a number of reasons. With Botox seeming like the ‘drug of choice’, I had heard that the girl in my doctor’s office was very overwhelmed and difficult to get in touch with even though they ask us to touch basis with her. I had also heard that she NEVER gets back to you.

My reluctance to go with Botox was because I would not want to depend on a preventative if it may not be available when I needed it and because it can wear off before the next set of injections. I know what it’s like when I have titrated off of a medication that doesn’t work all that well and it’s not that much fun.

Before I went to that last doctor’s appointment, I reached out to someone in our Migraine community who also goes to my headache center and has gone through the Botox process. She gave me some wonderful helpful hints! She made me feel more comfortable about moving forward with Botox as I knew that would be the route I would be taking after my third appointment with my doctor.

First of all, I have to say, I respect when someone tells me like it is. My Migraine friend came out and told me that the process is as bad as it sounds with ‘Botox girl’ at our headache center. But she also reassured me that it was well worth it for her and that I should go through all of it to see if it works for me too. She said the first authorization would be the hardest and once insurance approves it once, then it shouldn’t be much of a problem. She advised me to call my insurance company to set up a case with them; to take control myself.

I know we both work hard at our normal jobs. We shouldn’t need to follow up or do a big part of Botox girl’s job. It should be like any other prescription medication we have, but it is a little different and we do want to make sure that everything goes through especially since we usually hear that insurance companies can hassle us a little more about getting this approval even though my doctor’s office typically sends through people for approval that over qualify for Botox.

When I called my insurance company, they were excellent! They set up the case and even told me they had my doctor’s phone number, fax number and everything else if they needed anything. They took my basic information and I tried to keep giving them more information – the same info I gave my doctor at the appointment, but they kept assuring me that they needed and would get that from the doctor’s office. I thought I would try to give them as much information as I could to make it easier on everyone.

I called Botox girl and left a voicemail with the case number and all of my information. After a very respectable amount of time, I did the same again. I have never heard back from Botox girl. I was warned by my Migraine friend to NEVER expect a call back from Botox girl. Unfortunately, my friend did not let me down. I have to tell you, my boss would not be happy with me if I gave this type of service to our clients.

I felt kind of silly, but I ended up calling my insurance company back to see if Botox girl had ever called in and where everything stood with my case number. Quite frankly, I felt like I was getting desperate enough that I was ready to postpone my doctor’s appointment. I know I am better off than I was medication wise before my last appointment even though my Migraines have not improved, but I did not want to waste my doctor’s or my time if my next option wasn’t going to be available.

Apparently Botox girl did get the Botox ball rolling, but she should call to give patients an update. If I could not get good information from my insurance company and if it was too late for approval (they require ten days), I would have changed my appointment and raised a bigger stink than I will now during my appointment.

My Migraine friend has since given me a few more helpful hints. She let me know that her first round did nothing for her Migraines, but her second round was like magic. She also mentioned that one of her side effects was that she has started to get carded again when she buys a beer at the bar. I’m not too concerned about that side effect especially considering my oldest son is only ten years younger than she is, but it would be nice to reduce my Migraines as I feel like I’m at my wits end right now and don’t know how much longer my boss can be as super as he has been.

I have a week to do more research (I’m a real detail person) on Botox and really prepare for my doctor’s visit. Maybe I’ll also find some time to continue reading the book that everyone’s been talking about and of course I have a lot of work to still catch up on.

Do you have any helpful hints or stories about Botox that will help me get ready?

Saturday, May 19, 2012

Disruptive Vacation

(Picture taken through bus window)
It had been a long time since I had been on a real vacation and I was looking forward to the well needed break and rest. I was also anticipating some type of interruption, slow down or relief to my chronic Migraines.

Have you ever regretted going on vacation if the Migraine monster followed along?

I guess I’m more disappointed that I couldn’t get more relief and it probably didn’t help the others with me enjoy their time as much as they should have too. I was really expecting the Migraines to not be as bad as ‘normal’ and in some ways I think they were probably a little more over the top than usual. I had a Migraine every day and I know it didn’t help that hormones were a factor that got added into the equation earlier than they were supposed to.

Another issue I had is that I’ve enjoyed some plane trips where the plane ride actually aborted worsening Migraines. Not this trip. My Migraine kept getting worse on the plane and although I had already hit medication limits, I really needed to do something about the Migraine and was glad it was a red eye flight home.

(Taken from helicopter, see blade?)
I just finished posting pictures to facebook. One of my very good friends posted a question about if I had any Migraines while I was there. I almost feel like I not only ruined some time for those I was with, but now I am disappointing some of my good friends at home as they were pulling for me too. Stupid Migraine attacks. We need to stop making these attacks so explosive and disruptive!

I will take this as my opportunity to explain to my facebook friends and family that we can’t control Migraine disease despite all of the precautions we can take – don’t get hungry, wear good sunglasses, wear my hats, stay hydrated, etc.  Migraine attacks can still occur in a beautiful location while surrounded by loving family members.

This is another reason we need more research into Migraine disease which could result in better treatment for all of us. We still need more signatures for the Alliance for Headache Disorders Advocacy's petition urging Congress to hold hearings on the impact of Migraine and other headache disorders.

"Conviction is worthless unless it is converted into conduct." ~Thomas Carlyle

If you’ve already signed the petition, please spread the word. Congress must better understand us and how many of us, our families and friends are willing to stand up for ourselves before we will see any type of increased federal funding. We need to help us.

I don’t totally regret going on my trip as I still participated in as many activities as I could and I hope I wasn’t as big of a lump as I felt like I was for mom, aunt and sister. I do wish it could have been better – like no monsters should have come along…

How did you feel when travelling and vacationing when you got hit with a Migraine attack? Did you feel like maybe you shouldn’t have gone on your trip?  How did you cope?

Sunday, May 6, 2012

Fried Migraine Brain

"Why didn't you listen to me?" How would you like to hear that from your Migraine specialist?

Yes, I knew better. Yes, I didn’t think I had increased my medication too quickly until afterward. Yes, in my first visit my specialist stressed “slower is better, slower is better".

During my first appointment, he increased my dosage three fold and I managed that just fine. For my second visit, he doubled my dosage so I thought I could handle it again with no problem.

Mathematically, I already had more medication in my system so proportionately, the stepped up increased would be much less. The one element I didn’t factor in was the human component. Silly me, I’m not a machine.

Yes, my doctor said slower is better and I read all of the time about how much safer it is to take it slower. I definitely understand more now and I never even reached the increase to the full dosage – I stopped after the second increase.

This year has been one of the toughest years that I have experienced. My Migraines seem to be getting the better of me. Work has been more difficult because of them too. I am extremely fortunate that my boss has been very patient with me up to this point and I am always very concerned that his patience could run out at any time. I don’t know that I would have made it through some of my rough patches if I had been reporting to someone else.

This is a big reason why I was so anxious for my preventatives to start working and why I made my big mistake and increased it a little too quickly. My symptoms from increasing too fast were definitely counterproductive to working effectively. Some of these symptoms were I would forget things too quickly, I could not type, I could not think and I sounded like I would keep tripping over my words at times.

Before my last doctors visit, I decided I would step out on a limb. I was running out of new ideas and tired of feeling like I was complaining all of the time. I decided I needed to bring a testimonial with me to my doctor’s appointment of what I can be like.

If you think about it, this can be a very difficult question to ask your boss, but also an equally hard question for them to answer and give you a frank answer. I first told my boss that I was going to ask him a question, but it was perfectly ok if he didn’t want to answer it – yes, a little awkward for both of us. I asked him if he could ask my doctor a question, what would it be.

He didn’t hesitate. He basically said that on certain days I seem to have a more difficult time assembling thoughts than other days, but he also knows that I am going through some medication changes. He said he also notices when I am not a hundred percent. Nothing he said surprised me as I know he has been noticing my difficulties which I have to add can increase my frustrations. It’s tough to actually hear him say the words, but I know he said this to me as something to tell my doctor because he wants to help me. I really do appreciate everything he has done to support me during this challenging time.

As it turned out, while I was at my doctor’s visit, I had a Migraine and because his lights are very bright, my speech was probably the worst it had been in a long time and I hadn’t even increased my dosage in over a month. He could definitely hear my speech issues and see my frustration.

He decided to decrease the dosage back to where it had been before the last set of increases and only titrate back up when I am completely asymptomatic. He is also putting in for approval for Botox and I hope I was able to recuperate some from my prior bumbling with him.

He had mentioned Botox since my first visit with him although neither one of us was really ready to go there at that point. Somehow, with this appointment, we both knew this would be it. He just started filling out the application to go to my insurance company. I had done some pre-work and had already listed the different meds I have tried in the different classes.

In order to cover Botox, my insurance requires more than 14 days per month with headaches lasting 4 hours a day or longer and you have to have tried and failed trials of at least 3 classes of Migraine prophylaxis medications of at least 2 months in duration for each medication. I fit that criterion for the 5 different classes that my insurance company listed. Anyway, by giving him a medication in each class, hopefully I was able to redeem some of my credibility from the boneheaded move I did.

If I get approved for Botox, I hope to not need to increase my preventatives further and maybe even eventually decrease some of them. It’s been a few weeks since my last appointment and I haven’t re-increased the dosage yet. I’m not really sure when I’ll be ready to do that although I still want to get rid of these Migraines.

I am ready to be done with this, but I know I have to be patient too. Slower is better...

Have you done any idiotic moves because you wanted to hurry up and scoot your monster away too?

The Putting Our Head Together Poetry Contest entry has been extended through May 13th!  Please don't forget to enter! 

We still need to keep getting signatures if we want Congress to hear us!  If you haven't signed it, please sign the petition.  If you have signed it, please pass the link on so we can get more signatures.  Thank you!