Saturday, July 30, 2011

Tough Month Ahead

I find many things with Migraines are cyclical and coping is no exception to that rule. What do you do when you know you are not coping well?

I know I have a lot going on right now, my Migraine count is up and overall, I'm just not feeling like myself. I am trying to take one thing at a time and not worry about things I cannot control, but sometimes that's easier said than done.

I'm sure my trips to Pittsburgh with my parents were a lot more stressful than I let myself think they were. I can usually tell by my reactions to things like snapping at my mother while she is trying to be funny or even worse, snapping at my father while we were waiting for him to be wheeled away for surgery. I don't think I've ever snapped at my father before in my life and I know that was not a good time. I know I shocked both of my parents as well as myself.

I’m sure like most of you, I get even more frustrated as my Migraine count goes up which makes it even harder to cope with everything. I've even started to run into medication limitations again and I'm still trying to work through my endocrinologist visit. I don’t like going to doctors for the first time especially when I have a Migraine going on. I have found that although I seem totally functional when I have a Migraine, I am stifled when trying to think and talk. I am supposed to go back to the endocrinologist at the end of the year and have to have another ultrasound done by then too.

I have so many other pressing matters going on right now too. It is only three weeks until my company moves. I am very grateful that they plan to accommodate my light sensitivity again in the new building. However, there are a lot of loose plans around this accommodation right now. I have been trying not to stress about this since they told us about the move, but I don’t think they realize how big of a trigger lights can be for me. How can they when I still have a hard time understanding it myself sometimes? Honestly, I just wish I could be normal and not cause all of this trouble.

Currently my desk in unsettled meaning that originally I was supposed to be butted up against an office so I would be facing a corner. This really would have been great! Well, then they got rid of the office on paper and my desk was on an end overlooking a whole bank of lights which would have been impossible to accommodate the way I would need it to be. The last plan I saw there was something back in front of me, but they couldn't tell me if it was a room or another cube. In my convoluted world, that makes a big difference.

The plan is to put light sleeves around my cube but they are also going to be very careful about not interfering with my neighbors lighting rights. I have been assured that they will do whatever it takes but I am starting to feel like am a complainer and I can’t put my job in jeopardy.

I do have my hat accommodation to fall back on, but then I would be exposing my invisible illness to everyone every day because if I needed to wear a hat every day, then that is what I would do. The problem is that once I wear a hat for a certain amount of time, then I have to keep it on for the rest of the day because of severe hat hair. The other problem with a hat is that after wearing a hat for a while, it can start giving me a headache. It’s always such a precarious balance. I’ve been lucky where I am now in that I could turn out my own lights when needed and have only had to wear my hat for short periods of time while outside of my office.

I’m having another issue at work that has slowly cropped up lately. Although I have been backing off, it hasn’t stopped someone who has, until recently, been a very close Migraine confidant for me. We have been very close and shared many serious health issues for over a decade. The problem is that recently she has become comfortable making comments to and around others about my Migraines even if they didn’t know anything about them; even if there was nothing to really precipitate the comment. This is particularly disturbing to me at work where I will advocate as needed, but try to stay in my own place at other times especially because Migraines are so misunderstood and I cannot go around work lecturing about Migraines all of the time. I haven’t told anyone about her health issues and especially her last health scare where I know she would not have been able to keep it together.

Do you have a Migraine confidant? Do you have a confidant at work? Do you feel it's helpful and that it's really needed? She is still my friend, but I cannot talk to her or bounce things off of her right now. I miss that, but I have to remain cautious – especially at work. Maybe I come across as being open about my Migraines and having no boundries, but she knew I was very open with her and more limiting with others although open with them after assessing how much they really wanted to know. The problem is that she has done this on a few occasions lately and most recently at a corporate event where we didn’t know the other people in the room. Maybe I am being too sensitive, but I still think it’s for me to talk about me, for me to bring up the subject and not someone else.

There are a lot of things going on at work right now and I know I need to make it through this next month the best I can. It’s going to be tough and especially without someone to talk to about with how I’m doing or what’s going on with me – someone to bounce ideas off of and help me cope. I can’t do that right now. In addition to moving in this next month, we are also changing one of our big systems that we use every day. We are currently going through this very tedious training in addition to keeping up with our regular duties. There will be some manual intervention that will be needed at the time of the switchover as well.

I also have two huge projects that are due by the end of the month. At this point, I don’t know how I’m going to finish them although I have to do my best. I have a hard time working really late like I have done in the past to complete this job and weekends have been full of completing my home needs and catching up from my normal late work nights. I know once I get past some of this stuff I won’t be as stressed. I just wish I would stop being so tired all of the time.

Can you believe next weekend one of my sons will be going back to school already? I love having my boys around and will miss him terribly. I know he is in a good place there and doing very well, but he is such a pleasure to have around when he is home. As a matter of fact, we just put in a new mailbox post today. It was so much fun considering neither one of us knew what we were doing. I’m still trying to get the cement out of my ring, but if it doesn’t come out, I will think of him whenever I see it.

I have another neurologist visit next week . I have to find out what ideas she has as I am running out of them, but do want to bring something up with her again. I have asked her a few times about weather related Migraines and if there was anything that can be done to help them. I even mentioned that I had read where some people had successes trying different things, but I have always felt shut down as she said there is nothing you can do about weather triggered Migraines. I read another article today which was written by Teri Robert on Migraines Triggered by Weather Changes. It gave me a rejuvenated hope even though it ends with: “If you experience Migraines triggered by changes in weather, it’s well worth talking with your doctor about options to prevent these Migraines. Not everyone will be successful in this quest, but many people will be.”

It’s kind of frustrating to have to bring this up to my doctor again, but it’s also hopeful that different ideas given in the article have helped some people. I would rather try something and it not work then just give up. As you can see, I will need to bring this subject with up her again which will probably be about the fifth time.

Like so many others, I know I have a lot of stresses and frustrations going on right now. I am trying to deal and cope with it the best I can. One way I am doing that right now is by reading old blog carnivals that dealt with coping strategies.

The Headache & Migraine Disease Blog Carnival was created to provide both headache patients and people who blog about headaches with unique opportunities to share ideas on topics of particular interest and importance to us. Here are some of these older coping blog carnivals I am going through to try to pick up some additional helpful hints: Coping strategies, Migraines & Spirituality, How do you cope with your headache disorder and Hobbies & Coping.

What do you do that you find helps you deal better with your Migraines especially during more frustrating times?


Wednesday, July 20, 2011

More than a Headache

I'm laying here next to my mom; almost feeling guilty for last night. After a long car drive, my parents were relaxing and watching the news. They had just seen a news broadcast on Congresswoman Michele Bachmann and her run for the presidential office in 2012. My parents were commenting back and forth on different things while I was trying to catch up on some of my reading.

Shortly after their conversation, I came across Diana Lee's post In defense of Michele Bachmann, Migraineur, Congresswoman, Presidential Candidate. Since I'm always trying to bring awareness to the Migraine cause and since they were just talking about her, I mentioned that she was also a Migraineur and that this was being brought out in the campaign as a way of showing how she was unfit for the office. They called it a 'stress related condition' and since she controls her Migraines with medication, the smear campaign said she has 'heavy pill use'. Are we going back to the days when presidents have to hide their wheelchairs?

Anyway, going off track as I normally do while talking to my parents, I went on to say typical stuff people will say like 'it's all in your head'. My mother laughed and said 'if you think about it, it is all in your head'. Of course I couldn't let that fly. I know I kind of started it, but I can't let that go by as a joke especially by someone who not only had Migraines in the past (even if she didn't know they were Migraines), but has grandchildren, nieces, great-nieces and many more relatives with Migraine disease. Besides, what kind of an advocate for Migraine rights would I be if I pretended to laugh along.

I immediately said I didn't think it was funny. She tried backtracking a little, but with it being late and after the long drive, I was probably a little too relentless. I mentioned all of her direct descendants with Migraine disease, how hard it is for us to get people or doctors to believe us that our Migraines are not all in our heads not to mention how much money we spend for our Migraines. I asked about some of the other symptoms that are not 'in our heads'. As I said, I was not very kind to mom and probably feel a little guilty this morning.

I think I am tired of being discounted and fighting for everything I have and will still need around Migraines. I am tired of not being believed. I am tired of having to push doctors toward better treatment. I don't want this for my son, my nieces, my other relatives, my internet friends or anyone else. This Congresswoman shouldn't be discounted because she has Migraines. Should all of these other famous Migraineurs have been discounted too? This extensive list even includes President John F Kennedy as a possible Migraineur.

I will follow up with mom today and talk to her more about Migraine disease and how the headache is only one phase of a Migraine attack. I know she thought she was being funny, but this is very serious business to me. I think she did get that point last night, but I can't let this opportunity pass by to soften up last night a little and educate a little more. Urg...


Saturday, July 16, 2011

Subjective Scale

I am getting ready to take the two hour drive to my parents house and then another six and a half hour drive with them for the second time in three weeks. When we drove out to Pittsburgh the last time, for various reasons, they ended up not doing the surgery on my father. Baring any issues with the last minute testing, he should have his back surgery this week.

During our last drive, my father would talk about his pain levels being thirteen's and fourteen's. [OK, get your eye rolls out of the way now.] Being virtually trained by the best and knowing how doctors react to such levels on a pain scale of ten, we had a nice chat about the pain scale.

Don't get me wrong, I know he was in a lot of pain. For him to let me drive speaks volumes especially given that my dad did one hundred percent of the driving on my parents fifteen thousand mile driving vacation last summer. I also saw his MRI when we were in the surgeon's office the last time. He is in a lot of pain, but he/we still shouldn't go past a ten on the pain scale of ten.

To be honest with you, I have always had trouble trying to fit my pain into the scale. I kind of find it ironic that I would have given my father advice on this subjective scale as I have always found it amazing when someone can look at the chart and say what was their pain level. I remember my younger son immediately picking his pain level from the chart while looking at it after an operation. I even asked him how he picked that level and he replied that it just looked like he was feeling. I don't know, I didn't get it.

Do you have as much trouble trying to figure out your pain level by the little smiley faces like I do? I mean come on, are you still smiling at a level four? Do your tears only start at a level ten? I still don't know how my son picked out his pain level. Here is a diagram of the typical smiley faces that are associated with the pain levels:

One problem I see is that pain levels can vary from one person to the next. One person's mild pain can be a terrible pain to someone else. I think the most important thing for me is that I am consistent in recording my own pain levels and not worry about how other people rate their pain. My doctor and I have my history of pain levels which can show where I have been and where I am now which can be used as my comparison.

I remember going to an ENT for an earache one time. He didn't see anything in my ear so to appease me, he was going to do an ear pressure test. He told me he didn't expect to find anything and even wanted to bet me that he wouldn't find anything. The condescending way he was talking to me didn't go well, but I knew how much my ear hurt no matter how relaxed I may have appeared.

The ENT ended up repeating that test a few times because he couldn't believe how high the pressure was in my ear. I still question whether I should have become a little actress and exaggerated my pain to coincide with the level he thought I should have been at. I still always answer this question with I will be me and I will be misunderstood as I will give it my level of assessment. Like many of you, I have many other high pain level non Migraine stories including getting stung by about 50 bees, all around the ankles, all at once, and still being able to help someone else who was also stung, make it back down the path out or playing three quarters of an intramural college soccer game as a goalie with a thumb that was unknowingly broken in warm ups and I could go on.

Do you use a benchmark for any particular level on the pain scale?

I tend to use a level eight to be the point that I want to poke a hole in my head to let the pressure/pain out. Realistically, I know the hole won't work or help anything, but I know when I feel like putting the hole there and will purposely stay away from any sharp objects. I will then scale back for the lower levels. I can remember squeezing my head because it hurt so much which was way before I even knew I had Migraine disease and thought it was just another headache. I think that is one reason I use this as my eight benchmark.

We should never abuse the pain scale or say we have an eleven or fourteen level out of the ten pain scale. This will be met with a lot of eye rolling and not believing anything we say from that point forward.


Sunday, July 10, 2011

Migraine Related Nausea; Win an iPad2

The last time I went to my neurologist, we talked about alternatives to oral triptans. I normally get nauseous during my Migraines and on occasion, don't feel like taking a very needed triptan because of the nausea.

I wanted to talk to her about a different way to take my abortive for when I don't want to take any medications orally. She said she's not a big fan of injectables, so she opted with the nasal spray form for me. Did you know that our digestive system can slow down during a Migraine which could be one reason why oral medications may seem to work inconsistently or not at all?

I was looking forward to trying the new triptan method, but unfortunately, I could not use it the first few times I really wanted to try it. My nose was so congested that there was no way I was going to use any type of a nasal spray. Not only did I think I wouldn't be able to apply the nasal medication, but I really didn't even want to touch my nose. Because of my Migraine related nausea, I did not want to drink anything or put any oral medication into my stomach either which included taking oral triptans so I pretty much felt triptanless.

Of course I will talk to my doctor during my next visit about an injectable abortive again. Although I am not really overjoyed at the idea of giving myself an injection and have heard of some of those side effects, I am willing to try anything that might help my Migraines. I also carry around an Epipen; should I not use it if I ever needed it because it might hurt or be uncomfortable? That would be silly and I feel the same way about an injectable triptan.

I have since had a chance to try the nasal spray triptan. Like the oral triptans, sometimes it seems to help while other times it doesn't. Plus the nasal spray can occasionally have some untasty and other side effects.

If I can't always take oral triptans and I can't always use the nasal spray and my doctor doesn't like to prescribe injectables, what am I supposed to do? It would be nice to have another alternate way to take a Migraine abortive and I have heard of another form that will possibly be coming to us in the near future.

There is a transdermal (skin) sumatriptan patch, Zelrix, where the Food and Drug Administration is currently reviewing the drug application for approval. A decision is expected in late August. If that happens, the Zelrix patch may be available in 2012.

Zelrix is designed to provide Migraine patients fast onset and sustained relief through a non-oral route of administration. Hopefully Zelrix will provide a better alternative for many Migraineurs by bypassing nausea and vomiting and by minimizing other side effects. Zelrix has a controlled delivery technology that uses a mild electrical current to actively transport medication through the skin using a process called iontophoresis. Here is more information on the Zelrix patch. There was also information presented about the Migraine patch data at last month's American Headache Society's Meeting in Washington DC and additional data was to be presented at the International Headache Society's Congress in Berlin at the end of June.

What do you do, what do you take, where do you go for help or information when you get nauseous from your Migraines? How do you deal with the nausea part of your Migraines?

There is a new website that gives us information on Migraine related nausea. It's an easy URL to remember, There is already a lot of stats and facts and other information on this site which is still being developed. I plan to keep checking back to see what new information gets added as I am always looking for better ways of trying to handle that nauseous feeling. I know for me, the nausea can be the more challenging part of a Migraine than the headache phase.

If you log onto the website, you'll discover many of the things already out there including a video clip from a Migraine expert, who also happens to suffer from Migraines himself, another video from another Migraineur, a news page and many questions/facts that are asked and answered along with all of those stats I like to look at. I can't wait to see what else is added to the site.

This Migraine-Related Nausea More Than A Headache site is also running a contest where five entrants will be randomly selected to win an Apple iPad 2. The sweepstakes ends at 3:00 pm EDT on October 14, 2011. There is a complete set of rules on the site. In ten words or less, entrants need to describe what their Migraine related nausea feels like.

Good Luck!


Sunday, July 3, 2011

Military Migraine

We are having an everything party mixed into one for my oldest niece tomorrow. She will be going away for six months and wanted a big shindig for everything she will be missing during this time including our family reunion, her 21st birthday, Halloween, Thanksgiving and Christmas. I'm sure it will be a lot of fun where we will even throw in the 4th of July since this is the date of her party. I know there will be fireworks anyway!

Yes, we will have a big BBQ, turkey with all of the fixings, a Christmas tree, a birthday cake and all sorts of presents for her. She is joining the National Guard and will be in training for these six months.

I am proud of her, but also get a little worried about her because she has been diagnosed with Migraines since she was in kindergarten. She seems to know some of the things she needs to avoid so she does not get as many Migraine attacks which is very important. She has never been on any type of preventative.

Does anyone have any helpful hints for someone in the military for when they get a Migraine? I'd love to pass on anything I can to her to at least make that part of her experience easier for her.

As a follow up to Support for Migraine - Who's Responsible for the Disparity?, as soon as I sent my father the information on the AHDA automated alerts, he signed up to receive the alerts for himself. I have the full confidence that he will be an active participant from now on and will be sending out emails to his elected officials with our next alert especially since he has been actively involved with his representative and recently received approval for an American Legion request he submitted to them where he is now on a first name basis with his rep.

I will be talking to many other family members tomorrow so we'll see how successful I am with them and if they'll follow suit with my father. We are also scheduled to have our real family reunion in a couple of weeks. Last time, we had about 93 family members attend so tomorrow could be like a practice run for me for when we have this bigger family party.

We need to do what we can to be heard. The more people that speak out, the better it will be for us. Each email sent to an elected official represents about 100 people. We need to help ourselves and be heard.


Saturday, July 2, 2011

Support for Migraine - Who's Responsible for the Disparity?

I recently took a long driving trip with my parents where we were able to talk about many things including Migraines. I asked my father about the action alerts I have forwarded to him and quoted many of the statistics mentioned in the article I have reblogged below about the extremely low percentage of Migraineurs who received the alerts that actually acted upon it.

An action alert is basically a call to action, times when the Alliance for Headache Disorders Advocacy (AHDA) needs people to write to their Senators and members of the House, asking them to support requests that the AHDA advocates have made of them in person or other issues that have come up.

When these alerts go out, we really need to help ourselves or the people we care about by taking the 10 minutes or less it takes to respond to these alerts. It really is important that our politicians start hearing from their constituents so we can start getting the help we need for Migraines. You don't even need to know who represents you in the Senate or House or their email addresses. It's truly that easy.

Yes, my father did vaguely remember receiving that email from me and only now kept asking me to resend this information so he can take the proper action the next time an alert goes out. He not only has me as a Migraineur, but he has many grandchildren, nieces, great nieces and others that need help with this disease.

This interaction with my parents and other recent Migraine dealings really has me thinking that I need to take a different approach with my friends and family who always say they want to help. This is how I need their help the most as it will also help many of my friends and family who also have Migraine disease.

Do you receive these action alerts? Did you act upon the alert after you received it?

We need to help ourselves. One way I like to look at this is that I have received invaluable help from other Migraineurs and this is an easy way I can give so much back, to pay it forward, for what I have received from them. If you have not done so already, please signup to receive an AHDA alert and act upon it when you receive the alert.

Earlier this week, a new entry was posted on the blog of the Alliance for Headache Disorders Advocacay, Why the Disparity in Attention and Support for Migraine and Headache Disorders? Written by Bray Patrick-Lake, an AHDA board member and President and CEO of the PFO Research Foundation, this blog entry echoed some of what I've frequently thought.