Sunday, March 27, 2011

Tough Winter; Now Losing It?

This has been a tough winter and I hear it's been harder for many Migraineurs. In my state, we usually get snow, but nothing like what we have had this year. We probably didn't see our grass for about two months which is very unusual for us and also meant two months of gleaming snow.

Shortly after we finally saw our grass again, we had back to back snow storms. Right now, we're back to white lawns with all of the snow glare glory that comes along with it, but I don't think it will last too long this time.

Because of these and other uncontrollable triggers, I actually ended up suspending my elimination diet for a little while. This meant that I could only eat the foods I had already added in to that point and was not adding anything new back in until I felt these triggers weren't going to keep interfering with my diet. This helped maintain the integrity of my diet while not falsely identifying foods that don't trigger a Migraine for me.

My difficulties continued into this week as this was the week that started off with the two snow storms. On Wednesday, I also received a phone call from home and needed to leave work abruptly with the expectation that I would take care of a few things, finish my workday from home and return back to work the next day.

As it turned out that next day, I ended up working from home again while taking care of an injured family member. After spending the day at home with all of the new smells around, I believe I ended up with a smell induced Migraine and possibly a new symptom that I hope doesn't stick around.

Most of the time I get nauseated, but I don't lose my cookies. I ended up getting sick in the middle of the night. I don't know if I caught something or if it was Migraine related. I have read that some people feel better after they get sick. My head felt three times worse afterward plus I didn't even try to take anything for the pain because I didn't think I could have kept it down.

I really hope this is not a new Migraine symptom of mine. It's bad enough that my Migraines have changed and I have developed other triggers over the past year, but I would rather it be a one time thing or a twenty-four hour bug I caught. No matter how uncomfortable it may have been, I've always been grateful that I would only get nauseated with Migraines and I hope this is not the start of another Migraine change.

If you get sick from Migraines, does your head typically feel better, worse or about the same after you lose it? How has your winter been? Is spring really here now?


Sunday, March 20, 2011

Missing Opinion and Reasons

After I left my last doctor's appointment, I know I wasn't myself and even she said I would have a lot to contemplate. There was something bothering me about that appointment, but I just couldn't put my finger on it.

I know I can be kind of persnickety at times, but some things just need to be a certain way. I mentioned to my doctor that I had been thinking about Idiopathic Intracranial Hypertension (IIH) for over a year as something I might want to rule out and wanted her opinion on it.

There is no definitive test for Migraines, but a whole slew of tests to rule out other things. That's kind of the way I was looking at this whole thing. I have become very frustrated with Migraines and I just want answers or something that will help reduce or stop them.

I didn't approach her in a demanding way. I honestly wanted her opinion plus I laid all of my cards on the table because I don't like game playing. I mentioned that I knew you didn't need to have papilledema in order to have IIH and even knew of a few people who have IIH that don't have papilledema. I have a few concerns about the test which I did not bring up to her as when she started answering me, I didn't get what I've come to expect from her.

This month is actually two years that I've been with her so we know each other pretty well. She is the doctor I've been with the longest and although I trust her, she also listens to me when I talk about new ideas or theories I come up with. If she doesn't necessarily agree with me, she will give me her opinion and then give her reasons behind her thought process. This is the best way to deal with me.

When I brought up IIH, I know I brought it up in a very tentative way because I didn't want to come across as my way or the highway. I wanted her opinion. Although I didn't come out and say how frustrated I am right now, I know it was in my voice and mannerisms.

When she responded, she started off by talking about my having thought about this for so long. For me, this is just the way I am. I need my 'think' time and to feel like I have researched something enough that I can talk intelligently enough around a subject so that I can ask pertinent questions, not have the wool pulled over my eyes, be able to make an educated choice and sometimes to see how informed a doctor is in a particular area or how they react if they need to brush up. In this case, I just wanted her opinion and to take it from there.

After the empathy part of her talk, she started telling me to be careful about what I read. I knew immediately she was referring to "medical student's disease", but I'm sure they call it something else for us internet folks. Medical student's disease is a condition many medical students contract when they perceive themselves or others to be experiencing the symptoms of the disease they are studying. Another one of the reasons it takes me so long to research something is that I want to rule out medical student's disease or whatever they call it for us. Do you know if there's a name for us?

Anyway, she proceeded to lecture me on that. I know I don't take well to being lectured plus because I am not convinced I have IIH and would like to rule out anything at this point because I want to reduce my increasing Migraines. I also have a couple of other theories to go on right now which was another reason I went in a little softer on the subject. It also let her know some of the things I have been thinking about and I truly wanted to get her opinion on the subject.

She did go through everything I would need to do before I could have the LP test done. She told me I would need to go to a neuro-ophthalmologist and have a CT done before the LP. There was another thing she said that really bothered me too. She said that since I'm not obese, I would probably get a spinal headache. As silly as it sounds, I believe in positive thinking. I believe I would not get spinal headache, but will know what I need to do just in case I did. At the end of the appointment, I knew there was something bothering me about this whole appointment, but I just didn't know what it was or what I wanted to do next. I left the appointment where I came in only with a lot more to contemplate.

I know I am not the same patient I was with my first neurologist where I started off as the typical dishrag. After learning about Migraine disease (not from my doctor) and how to stand up for myself, I fired this first neurologist after she actually tried to discourage me from doing the biggest thing that has benefited my Migraines the most to date. I realize that I can probably be a challenging patient at times, but that's not something I'm willing to change.

Now that I figured out what was missing from my last visit, I will plan to bring it up during my next appointment along with making sure she understands that I am very frustrated. I want to make sure she knows where I stand.


Sunday, March 13, 2011

Upcoming Office Move

Although the date of our office move keeps getting pushed off, it is also getting closer and closer to when we will be moving. No matter what the date, I will be losing control over my immediate work environment as soon as we move. Yikes!

I have to admit that I am still very uneasy about this unknown. The biggest comfort I have is that Bart my Boss has a good idea of what I need and will do what ever he can do to make sure I get reasonable accommodations.

We had a building meeting this past week and I can't say that I feel much more comfortable after the meeting than I did before it. There were four of us in this meeting. Bart, me and two executives in charge of the move. Everyone there knew about my light challenges.

When it came to picking out where I would be sitting, Bart was really good. He would listen to what I had to say and try to guide the others as to what was needed without coming out and saying it was an ADA issue since they already knew that. We're still trying to work with them as much as we can without making too much of a ruckus yet.

The two executives have even had other conversations with the buildings people on what could and couldn't be done to help accommodate me. I can't say that they really understand, but it certainly sounds like they are trying and it really touches me. In the end, I know that Bart will do whatever he can to help me get what I need and I will do what I have to do.

The biggest item I am concerned about with the move is the lighting. This is what is the most out of my control and what is toughest for me to workaround. In the past, I have used my own lighting workaround that was sufficient for me although management was not too keen on how I worked around my lighting issue. I did what I had to do to make it through the day and I will do the same again if needed. I currently have full control over my lighting environment which includes a light switch, blinds and light sleeves that filters the fluorescent lights and some of their flicker.

During our meeting, noise was also brought up during the conversation. They had actually already taken noise into consideration and had not reserved any desks for me that were in any of the main traffic areas. That was really touching especially since I have never said anything about noise because the lighting has always been my biggest concern. I figured if I could get help with the lighting, I could deal with the noise better on my own than I could the lighting.

I also never mentioned some of my other environmental concerns, but if my desk is in the area we picked out, I don't think I will need to worry about smells from the cafeteria, microwaves or bathrooms. I figured I would ask for the item that was the most out of my control and manage the others as best I could. I don't think I have to worry about the smells now and am real thankful for that.

I will have to start putting my plan into action about my noise concern because no matter where I was going to sit, noise was going to be something I was going to have to handle on my own. I have ideas about the noise and will start putting some of my plan into motion soon.

One of the hardest parts about this planning and picking stage right now is that I haven't seen the inside of our 'new' building. They will also be redoing a lot of the inside so any questions I have asked, they really can't answer - such as questions around the positioning or patterns of the lights. I am already expecting them to be uncovered fluorescent bulbs.

There is more to come on the move. Much more to come on where I will be sitting and what ADA accommodations I will end up with. I have worked too hard on my Migraine management to let this be a big obstacle to getting under better control and am happy that I have Bart in my corner to help me through some of the red tape. In the end, I will make sure I get what I need one way or the other. I have to...