Monday, May 22, 2017

Am I Brave Enough?

As June quickly approaches, I've been spending a fair amount of time thinking about this year's migraine awareness month. Each year I try to spend the month participating in some kind of awareness raising activities. I've done the blogging challenges and shared facts on social media. I've been trying to think of something different to do this year, just to change things up. 

The theme this year is, The Art of Migraine and Headache Management. The only idea I've come up with is to spend the entire month documenting the raw ugliness and everyday realities of living with chronic migraines on my personal Instagram account. 

This is a big deal for me for a couple of reasons. First, I don't really share the details of my struggle with many people in my life because I don't want to bring folks down and I want them to treat me as normal as possible when I actually feel well enough to go out and socialize. Second, I don't share much about my life with chronic migraines on my personal social media because I fear this information could some day be used as a reason for potential employers or insurance companies to discriminate against me. 

Everyone I know, knows that I have frequent migraines. Some people know that I have chronic migraines and also understands what that means. A handful of people know just how much it effects my life. Any lack of understanding on the part of my family and friends is mostly due to the amount of pretending I do, both in person and on social media.

When people ask the obligatory - "how are you?", I smile, gloss over the ugliness of the truth and change the subject. I respond honestly when people truly ask about how things are going or how I'm feeling. But I almost always follow it up with a positive platitude in an attempt to make us both feel more comfortable and to move the conversation in a different direction. Basically, if I'm out socializing with folks, I'm putting on a show. Because my chronic migraines (and other conditions) are invisible illnesses, people tend to believe what they see in me - the show I put on for them. 

I can usually put on a show for a short period of time. But what few people see is the preparations that went into the show, the struggle to get through it and crippling aftermath. Even the handful of people who get glimpses into the reality of the show never truly get to see the mental and emotional toll it takes. That's a personal hell that people can't know unless they have experienced it. 
I've been feeling increasingly brave about sharing more with my friends and family. In the past few months I've shared pictures of myself during a migraine on my personal Instagram account. It is this impulse to share some of these moments that inspired me to want to spend this migraine awareness month sharing the big, ugly, real picture of living with chronic migraines with them. 

Then I saw a statistic last week about the huge percentage of applicants who have been taken out of consideration for jobs because of what is on their social media and I got cold feet. That's my big fear - being discriminated against because of my chronic migraines. The reality is that, I've been out of work for so long because of my health that I would need to explain my employment gap to any potential employer. 


This fear is very real and runs deep inside me. And what's worse, it is unreasonable to think that this information could be used against me in the future. 

I want to reject this fear. I want to be brave and live more fully in my truth. I want to stop pretending out of fear. I want to live more authentically and not just as my alter ego - Migrainista. Am I brave enough? I think so. I'll keep you posted.

Thursday, May 11, 2017

The Relationship Between Muscle Tension and Migraines

This has been a rough week so far. I've been battling a terrible migraine and now the muscle spasm in my neck, shoulders and upper back is redeveloping. In an effort to get on top of this spasm before it gets out of hand, I've started using the Thermacare Heat Wrap and am working hard to keep the area relaxed. 

Relaxing these muscles is a huge undertaking as they tense up in response to the migraine. The worse the pain the more of my upper body becomes tense and the harder it is to relax them. This tension seems to then make the pain worse, which makes the tension worse. 

I don't entirely understand the relationship between my muscle tension and my migraines but there is no doubt one exists. 

The first neurologist I saw for my migraines told me I had a lot of tension in these muscles. At the time, my migraines were constant - 27/7 migraine. He seemed certain that this tension was retriggering my migraines. Before one would resolve, another one would be triggered causing the constant migraine. He put me on the daily Baclofen (muscle relaxer), which has brought the frequency down to an average of 18 per month. I honestly think I would have lost my mind years ago if not for the Baclofen.

The migraine specialist I was seeing at Mayo insisted Baclofen is not a migraine drug, which is what prompted him to send me to physical medicine. It was this referral which lead to me getting the diagnosis of Fibromyalgia. As much as I was relieved to finally have some answers about the other non-migraine symptoms I was having, I was also frustrated that nobody seemed to be looking at the big picture. The truth is that before the Baclofen, I constantly had a migraine. The two ARE RELATED. 

The compartmentalization that can occur within these specialties can make it difficult to sort through any sort of relationship between symptoms or conditions. I'm feeling trapped in this crack in the system, unsure where to turn to get help; but in need of help as my muscle tension is becoming a bigger problem. Interestingly enough, I'm also seeing an increase in the severity of my migraines. 

Thursday, May 4, 2017

Repeal and Replace Panic

Are any of you as worried as I am about this repeal and replace business? I was so relieved when the bill was pulled last time and Trump was pitching a fit, saying we are stuck with what we have for the foreseeable future. But here we are, several weeks later, and the house is getting ready to vote. I guess he can't see more than a week or two into the future at any given time.

Then I see something like this and my worry turns to a feeling of panic.

This man is a lawmakers!?!?!?!

The stakes are high and I'm troubled that none of the discussion are about what will bring down costs and provide better coverage. Instead all we hear is about the politics of it. How important it is to repeal and replace because that's what they were elected to do. How important it is to keep some popular parts of the ACA because constituents demand it.

Nobody has read the current bill, we have not had an opportunity to review and discuss it, we don't know what it will cost and what the effects will be. But it's in the republicans best political interest to say they repealed and replaced Obamacare even if millions of people lose coverage, costs go up and people with preexisting conditions get priced out. They don't care at all.

As far as I'm concerned both parties are guilty of not being honest about what it will take to provide affordable health care to everyone because the special interest have unfairly branded the notion of a single payer system in a way that makes it seem dangerous and anti-American.

The instability and the constant effort to take away what little bit of progress we have made in the healthcare arena is hard to cope with. The USA stands alone in making health care a privilege instead of a right. We spend more and are sicker than any other industrialized country. What will it take to turn the tide?

Wednesday, May 3, 2017

Another Doctor, Another Dehumanizing Experience

Well I tried a new primary care doctor yesterday and it didn't go well. Yet another dehumanizing experience. This doc wanted me to justify why I was taking the medications I take. I don't mind explaining who prescribed my medications, how it came about, what the medication does for me and how long I've been on them. I'm not on any opiates. All of the medications I'm currently on have a direct benefit to my quality of life. The dosage was dictated to me by specialists and I'm just looking to maintain the status quo. I have nothing to be ashamed of and nothing to hide so discussing them with a new doc is no problem.

But I took offense to her response to all of my medications. She told me that I'm not using any of my medications as they are designed. She said it is all outside of her comfort zone because she is an internist (the website had her listed as a family doc so I was surprised to learn that was incorrect) and when people are presenting with conditions that require that kind of care she likes to defer to specialists. 

I explained that all of these meds were originally prescribed by specialists and that I'm just looking to follow their plan and maintain the current level of benefit. She told me that she wants me to go back to see all the specialists so that she can develop a relationship with them and they can coordinate my care. I do actually want to see a migraine specialist again to tweak my rescue meds and begin a relationship so that when this new preventative hits the market in a few years I can give it a try. But there is zero benefit to going back to these other specialists because I'm currently on a treatment plan that works. The rest is up to me. 

She seriously wants me to spend hundreds of dollars and waste precious time and energy going to specialists so SHE can feel comfortable with my medications. If I go to all of them every year then I don't need her at all. They can just provide the prescriptions. But that not how this is supposed to work. If I don't need ongoing care I don't need the specialists anymore. I should be able to continue my care with my primary care doctor. 

Another thing she did that bothered me is that she asked me if I had filled out a record release form. I answered. Then a couple minutes later she asked again. I answered. Then she asked again. I answered. She continued to ask me this same questions over and over throughout our appointment. She clearly wasn't paying attention, which makes me wonder what else didn't she hear me say. Then I wonder what she put in my chart. Was that correct? Did she give me some negative label that will follow me any time I see a doc in that system?

Clearly, this is not the doctor for me. I'm trying to simplify my medical care not complicate it and spend more money on it. I just want to cry. I feel so defeated by the continued failure to find a good primary care doctor. What I wouldn't give to be rid of them entirely. I wish I didn't need medications or doctors. I wish I could just have a yearly exam and go on about my business. I wish there weren't so many shitty doctors. I wish the good ones weren't so hard to find. I wish we could have more say in our treatment. I wish there was a way to interview a doctor or otherwise determine if they would be a good fit prior to making an appointment. 

Monday, April 24, 2017

A New Approach to Botox

My recent trip to urgent care for my muscle spasm yielded a very interesting conversation with a fellow migraineur. The doctor who was working at the time happened to be a D.O. who used to have frequent migraines. A quick look at my history revealed my status as a chronic migraineur and so she wanted to tell me about how Botox significantly reduced her migraines.

I explained that I had tried it before and it hadn't been effective. Honestly, I just wasn't interested in having a conversation about it. I was there for my spasm and the matter is quite complicated. But since she's a doctor I heard her out and I'm glad that I did. 

Apparently she had gone to a plastic surgeon long before Botox was being used for migraines and asked to get injections in her specific trigger points. She had discovered on her own that she was able to stop a migraine if she caught it early with an injection of lidocaine into the painful spot where it seemed to manifest from. This gave her the idea to seek out Botox injections in those points for a more long term solution. And it worked.
So instead of getting a prescribed number of injections in prescribed locations she only gets them in her specific trigger points. She emphasized that it has to be given in the exact right spot and she says that as the patient you really know when the doctor is in the right spot because it's pretty painful. She has been doing this regularly for many years and has had continued and consistent positive results.

I am fascinated by this notion. Doctors have been attacking trigger points with various methods as treatment for many years. There are nerve blocks, nerve decompression, topical ointments, acupuncture, acupressure, nerve stimulators, etc. Even traditional Botox as treatment for migraines is centers around these areas. I've heard so many stories from people who have tried Botox with such varied results. Sometimes it works for a while and then stops, or responds differently to each new round and I have to wonder what makes up that difference. I would think the same person, getting the same injections, from the same doctor should get consistent results.

This conversation got me wondering if the difference is that sometimes those injections are better placed than other times. If the doctor is injecting into a prescribed area that isn't relevant to your migraines perhaps it has no chance to work. If the doctor sometimes happens upon the right point that might produce better results. If a precise location is really that important, that could partly explain why experiences can be so varied despite other consistent variables. 

This method has been very effective for this doctor, which certainly doesn't mean it will work for me or you but I think it's worth exploring.

I still have questions. I don't know if my insurance will cover an office visit with this plastic surgeon or if they will cover Botox injections done by him in an unconventional manner. I don't know what it would cost if they don't. I would like to talk with a migraine specialist about this. And I'm super curious what you guys think of it. What do you think?

Thursday, April 13, 2017

It Shouldn't be this Hard

So I never heard back from my primary care doc. I called her on Monday (day 5 of this muscle spasm) and asked if she might be able to spend in a script to help me because I wasn't able to drive. She didn't bother getting back to me so on Tuesday morning hubby had to go into work late so he could take me to urgent care.

I called the doctor in pain and with almost no range of motion in my head/neck area. She couldn't even bother calling me back. I wouldn't have minded at all if she wasn't comfortable sending in a prescription without seeing me. That is a perfectly acceptable response. But no response! No response is unacceptable!

I got what I needed from the urgent care doctor but she wanted me to follow up with my PCP if I don't feel better in a few days. Two days later and I'm not sure that my muscles are actually letting go. Between the muscle relaxers and Thermacare heat wraps I'm doing okay during the day but overnight the meds wear off and I'm in rough shape by morning. The very last thing I ever want to do is go back to that damn PCP.

The doc and her office staff have proved to be completely useless at every turn. But the way they have handled this situation makes me so angry. Today I received an email from Optum Rx informing me that my order is in the mail. I didn't call for a refill nor did I see or talk to my doctor so I have no idea what is on it's way. When I called Optum to find out I learned that my PCP went ahead and sent in a prescription for a muscle relaxer.

She didn't bother to call me. She didn't bother to use her brain. Common sense should have told her that it would take at least a week for me to receive the muscle relaxer from Optum Rx because they would need time to process and then send it in the mail. I obviously needed this right away so she should have sent it to the local pharmacy I have listed in my chart. AND I SHOULD HAVE BEEN INFORMED OF WHAT WAS HAPPENING!!

I'm so sick of being treated like I am not a part of this. I'm sick of all the mistakes! I'm sick of constantly trying to fix their fuck ups! I'm sick of not being able to talk directly with my doctor unless I come in and pay! I'm sick of not being treated with common decency and respect! I'm so sick of this broken system!

I wish I didn't need all these idiots who stands between me and access to the medications I need. Why are so many of them idiots?!?!?!? Why is it so hard to find a competent doctor with competent staff? It shouldn't be this hard.

Monday, April 10, 2017

Muscle Spasm, Migraines and Fibromyalgia

I'm now 5 days into a fairly severe muscle spasm. My neck and upper back started to spasm this past Thursday. Despite resting it, using the heating pad and taking my usual daily dose of muscle relaxant, the pain and stiffness has only gotten worse.

Muscle spasms are a regular part of my life. They have been for a very long time. What's unusual and noteworthy about this one is that it isn't resolving and it covers a fairly large area. I had one like this right around the time my migraines were starting to increase in frequency.

A little more than a year later my migraines were daily (constant). About 6 months after that, the neurologist I was being treated by in North Carolina put me on a daily dose of bachlofen (muscle relaxer). The idea being that if I could calm down the muscle tension in my neck/shoulders/upper back area that would prevent my muscle tension from retriggering another migraine before it has a chance to resolve.

Obviously this isn't a migraine treatment but it absolutely did reduce my daily migraine down to an average of 18 per month.
Perhaps it was actually treating a component of my fibromyalgia (I didn't even know I had at the time) and by doing so it helped with my migraines. Either way, I've taken 30mg of bachlofen every night for the last 10 years. Now I'm beginning to wonder if my body has grown so accustomed to it that it no longer is as effective as it used to be.

When I look at the big picture of my migraines and fibromyalgia I can't help but notice there are several components out of whack. Perhaps it's time to seek out a local migraine specialist. I would prefer to continue to see my specialist at the Mayo Clinic but considering I'm facing a number of questions I think it would be better if I could find someone local. Wouldn't hurt to give it a try.

Meanwhile, I have my fingers crossed that my PCP will call in a prescription to help me get on top of this present spasm. The range of motion in my neck is so bad that driving is not an option.