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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.

Tuesday, March 28, 2017

Lesson: Migraines and Wedding Receptions Don't Mix

Still in full wedding weekend recovery mode, I thought I would take a moment to talk about the important lesson I learned from this event. The very nature of a wedding reception is intolerable for my migraine prone self. I've decided that this was my last wedding reception.

I went into the weekend feeling as prepared as I could have been. With all the family coming into town there were gatherings being planned Thursday, Friday, Saturday and Sunday. I had made up my mind that I would attend the Saturday and Sunday events, knowing that 4 days of activity was just not going to be possible. That included the wedding, the reception and a small, informal gathering on Sunday afternoon with family who was still in town. 

The wedding went well and after we had some down time to return home to eat, rest and feed our animals before the reception. The rest did me good and the pain medication I took during that time allowed me to pull myself together again and head out to the reception. The reception hall was beautiful and the temperature was perfect. The meal was hot and quite tasty. But the noise, oh my word! The din of the 300+ guests was overwhelming, add in the live band, who played throughout dinner and then got louder for dancing after, and it was just too much. There was no way to mitigate that. 

I was in rough shape after all that and by Sunday I was in even worse shape as my body was still dealing with the fallout. I ended up having to take even more medication that morning to be able to attend the casual Sunday gathering. I knew then that wedding receptions were just something I shouldn't be doing. The price is too great. 

Looking back, I probably should have planned to attend the Friday evening event and the Wedding on Saturday, with the option to attend the casual Sunday thing only if I was up to it. That would have allowed me the opportunity to talk with more family and I could have done it without putting my body through the extreme stress of the reception environment. I can't really do any amount of dancing with my feet pain, I can't really have much conversation in that loud environment and the late night nature of the reception pulls me out of my routine in a pretty significant way. There is almost no benefit and a whole list of detriments.

Healthy, young me always loved wedding receptions. I loved loud music, I loved dancing and all the merriment that surrounds it. I wish I could go, have a great meal, a nice glass of wine and then spend the evening dancing with my husband and laughing it up with all my family. I wish it wasn't all so very painful. I wish I could just have a small vacation from my pain long enough to do something normal like attend a wedding. BUT I can't. This is my truth. It's hard to accept but that is exactly what I need to do. 


Wednesday, March 22, 2017

Preparing for a Big Weekend

A cousin of mine is getting married this weekend. Thankfully, it's a local wedding so we are able to attend. Still, there is much to do to prepare for the festivities and to prepare for house guests. I tried to do as much as I could in advance so that I could spend a fair amount of time just resting this week but much of what needs to be done, needs doing closer to their arrival.

I always enjoy seeing my extended family and I do love weddings. I would love to spend the weekend soaking in as much family and fun as possible. I wish I could press pause on my migraines and fibromyalgia so I could talk, dance, drink, eat and laugh all weekend. Unfortunately, chronic pain doesn't work like that.

I attended another cousin's wedding almost exactly one year ago and learned some important lessons that I hope will help me better navigate this year's event. 

Lesson 1: Bring sweaters. Last year I was so cold through the entire reception, which caused my muscles to become tense, which caused a tidal wave of pains, including a migraine. If I'm cold for more than a few minutes the result is pain 100% of the time. By the time we got through all the various courses of the meal I had been extremely cold for about 3 hours and we had to leave a short time after. This year I'm going to bring a long, thick sweater with me in case the reception hall is cold. I don't even care that I don't have one that matches my dress, I just can't deal with another dinner like that.

Lesson 2: Bring ear plugs. I don't know why I didn't think about this last year but boy did I rue the night. The reception hall was huge and we were up front, right by a giant bay of speakers. It was bad when they made announcements but it was horrible when the music started. Much too loud for this migraineur. This year I will be better prepared with ear plugs. 

Lesson 3: Eat before the reception. Hubby and I are vegetarians so we signed up for the vegetarian option on the RSPV. Last year the RSVP included a description of what the vegetarian meal was and it sounded wonderful. Unfortunately, between the super cold reception hall and the cold plates the meal was served on, our wonderful pasta dinner was cold by the time it reached us. We didn't eat much and I was pretty hungry when we went to bed. Yet another pathway to pain. This year we don't even know what the veg. dish will be so we are going to eat before to ensure we get to eat something good. 

Further preparations include:
- Bringing my own water bottle of room temp water so I don't have to deal with cold, iced water.
- Because of my foot pain, I had to search out a pair of flat, comfortable shoes. I wasn't able to find anything I would classify as formal that fit the comfortable requirement but I found something close enough. Comfortable was the #1 priority. I'm not about to spend the next 3 months recovering from a formal pair of shoes. Nobody I care about will judge me.
- Resting as much as I can in the days and hours leading up to the weekend.

Being so prepared, I'm left with space to just be excited. I'm excited to have my mom and sister staying with us. I'm excited to see a bunch of extended family. I'm excited to get dressed up and attend this wedding. I just hope my pain isn't too intrusive this weekend so I can have more fun than I was able to have last year. 

Wednesday, March 15, 2017

How Is It Only Wednesday?

This has been a tough week so far. I'm still struggling to adjust to the cruel and ridiculous time change. It blows my mind that we have collectively decided to just go along with this madness year after year. Surely we can come together and pass a law abolishing it altogether. Boom problem fixed. sigh

Anyway, during this adjustment our sweet little chihuahua, Gypsy, developed another UTI. She is prone to getting them from time to time and just for fun she got a very severe one yesterday. Between dealing with her symptoms and making the trip to the vet I was in a lot of pain.

Then, just before bed, she threw up. It was more vomit than I could have ever imagined a tiny dog like her could produce. So me and my migraine had to stay up and do some laundry. Then spent the rest of the night checking on Gypsy every couple hours to make sure she didn't need to go outside.

Poor little girl. Her need to snuggle increases when she isn't feeling well so we will be doing little else over the next day or two. That works out well because I need the recovery time as well.

I no longer have any sense of what time it is. My head is in a lot of pain and, despite being extremely fatigued, I can't seem to fall asleep.

At least Gypsy seems to be feeling better today. How is it only Wednesday!?!

Friday, March 10, 2017

Lent and the Unintended Migraine Trigger

I've never been a fan of lent. I won't bore you with all the reasons but I do want to talk about why it bothers me as a migraineur. It's all about the stench of rotting fish in the garbage and my sensitivity to smells. For those of you who don't know, one way many people observe lent (the time between ash Wednesday and Easter) is by eating fish on Fridays. The increased fish consumption in homes means there is suddenly all kinds of fish parts and fish soaked trash left to rot in garbage bins.

This is a real problem for people like me, who live with chronic migraines that are easily triggered by smells. It has been more of a problem since we moved into our current neighborhood about 3 years ago because so many people keep their garbage bins outside. Making matters worse, garbage gets collected here on Thursdays so the Friday fish has the whole week to rot and work up a terrible stench. This year has been especially bad because we've also had warmer than usual weather.

It has gotten so bad that I can't stand walking anywhere near what I'm calling the lent houses. That might not sound like a big deal but the daily walking I do with our dog is very important to both of us physically and mentally. Our neighborhood consists of one main road only a few blocks long, with two small cul-de-sacs. The lent houses are at the beginning and the end of our neighborhood, with our house near the middle. Our walking now consists of going a few houses in one direction, turning around and going the other direction a few houses and then back home.

The poor dog doesn't understand why I won't take her on a full walk and the decreased exercise leads to frustration. Even avoiding the worst of the stench I feel like the it follows me back inside the house. I don't know if it gets stuck in my nose or if some of it gets on me. Either way it takes a bit to shake the smell off.

The smell is so bad this year I find it impossible to believe that it doesn't bother people who have a regular sense of smell and no migraines. This year lent doesn't just bother me. Now I rue lent and can't wait for it to be over.

I guess I should just be glad the houses immediately surrounding our house do not do this and that the wind pushes the scent away from our house instead of towards it. At least I'm safe home. That's certainly a plus.