Checking In

I disappeared for a while, and I apologize. When I wrote Migrainous Musings, I was two weeks into an intense status migraine. Unfortunately, it persisted.

Following an unsuccessful round of corticosteroids, I completed a 3-day course of outpatient infusions. They brought it to a bit more manageable level, but it didn't help as much as they did last summer when I did them.

Photo by Kelly Sikkema on Unsplash

Then, I got sick. Deciphering whether head and face pain is from migraine or sinus pressure / mucus is tricky... much less how to treat it. A couple days in, the coughing started and made my asthma flare. Dealing with common sickness on top of chronic illness is unpleasant.

I've been doing my best to allow my mind and body the time and space to rest and heal, but it's hard.

Fatigue, depression, anxiety, insomnia from meds, boredom / difficulty distracting oneself... all on top of the ongoing pain and other symptoms.

I'm trying to complete what I can, when I can, how I can. Then, do my best to practice grace and compassion with myself.

"Give yourself the same compassion and grace that you give to the people in your life that you love the most." - Jennifer Rothschild

Establishing Care With a New Provider: Step by Step

You've made the decision to seek out a new healthcare provider... what's next?

This is the third post for establishing care with a new provider: My Journey and The First Step.

Photo by rawpixel on Unsplash

Below are some guidelines to help you through the process. I've divided them into before, during, and after the appointment.

Before 

• Find a healthcare provider. Follow this link to Find a Headache Specialist. 
• Check insurance coverage and restrictions. Contact or search to ensure your new healthcare provider will be covered by your insurance. If your new provider is a specialist, check with insurance to find out if a referral is required. 
• Schedule your appointment. Either have you current provider submit a referral or contact the new provider to schedule an appointment. Specialists are often difficult to get in to see. Be prepared for a long wait to get on the schedule. 
• Request and complete paperwork ahead of time. Some providers will automatically send you the paperwork ahead of time. If they don't, simply request it. 
• Request to transfer your medical records and test results. Contact your current and/or previous provider(s) to make this request. You'll need to submit a record release form. The transfer of records can take several weeks, so make the request early. 
• Consider bringing someone with you to your visit. Make sure this is someone that you're comfortable having in the room with you. Have him/her take notes of what the doctor says, so that you can focus on the appointment. 
• Make a list of questions and concerns. Prioritize the list, as you may not be able to get to all of them.
• Prepare a list of current medications (including prescription, over the counter, vitamins, and supplements). Providing a list of previous medications can be useful, as well. 

During

• Share your short introduction. This doesn’t have to be done in a formal way, but it can often provide a good start at the appointment. 
• Answer questions honestly. This is not a time to wear a mask. Try not to over- or under- state the intensity or severity of your symptoms, as an accurate assessment is important. Be prepared to be specific in describing symptoms and how they affect you. 
• Address your list of questions and concerns. It may not be possible to address the entire list during the appointment. 
• Clarify if there is anything the healthcare provider would like you to track. Each provider has different preferences about what they want tracked, for how long, and in what format. 
• Discuss goals of treatment. Sometimes the goals and expectations that we have for our treatment plan vary from our doctor's. 
• Discuss expectations for communication between visits and for emergencies. 
• Ensure that you know / understand what your next steps are (testing, treatments, etc), and when you should plan your next appointment. 

After

• Complete any follow-up tasks your provider requested (if applicable). 
• Follow the treatment plan you and your provider have agreed upon. 
• Request office notes for your personal records. Some doctors utilize an online portal for records and communication. 

Rest assured that the initial appointment with your doctor is just the beginning. You don't have to get everything in during that first interaction. This is the start of a partnership and another part of your journey.

"Coming together is the beginning, keeping together is progress, working together is success." - Henry Ford

Establishing Care With a New Provider:

• My Journey
• The First Step
• Step by Step

Establishing Care With a New Provider: The First Step

You might be seeking to establish care with a new healthcare provider under any number of circumstances, but knowing how to proceed can be daunting.

First, congratulations on taking charge of your health. Finding a provider that is a partner in your care is a powerful thing, and is definitely worth the time and effort involved.

Second, take a deep breath.

Photo by sydney Rae on Unsplash

It may feel like you have an insurmountable climb ahead of you, but just take it one step at a time. 

I previously shared My Journey. Here are a few things that helped me move forward in establishing care with a new provider. 

Many of us have a lot of data on our chronic illness, including medical history and pain trackers. Understand that there's simply no way that a doctor has time to go through all of that for each patient... and that's okay. 

A lot of what I was so overwhelmed and anxious about was feeling that I wasn't going to be able to provide all the answers or information the doctor would need to partner in my care. 

Having a brief introduction prepared is a good place to start. Being able to concisely share a description or outline of your journey is a great skill to have. Consider how you would share your health story in just a few sentences. Some questions to guide you:

• When did you start experiencing headache? 
• When were you officially diagnosed? 
• What was your diagnosis? 
• What categories of treatments have you tried (e.g., medications, devices, alternative therapies)? 

You know your body and your experience better than anyone. The combination of your new patient paperwork and your short introduction should result in a conversation between you and the provider. They will ask for more details when they need to, and you'll be able to answer because it's your experience. 

Establishing care with a new healthcare provider can be difficult and stressful, but it can also be hopeful. This is an opportunity for a fresh start. A new partnership. A different set of knowledge, skills, and experiences.

"The journey of a thousand miles begins with a single step." - Lao Tzu

When I was writing about this topic, I found myself addressing it from two different angles: personal experience and as a step by step process. It’s not unusual for me to struggle with which way I want to share, as well as with indecision. I’ve chosen to post both, as I believe them to both be useful in seeking and establishing care with a new provider. Stay tuned for the Step by Step guidelines.

Establishing Care With a New Provider:

• My Journey
• The First Step
• Step by Step

Establishing Care With a New Provider: My Journey

A friend of mine recently moved to a different state and is facing the daunting task of finding and establishing care with a new healthcare provider. When she shared this with me, I remembered all of the feelings and emotions that had flooded me, when I faced the same thing. Sharing my journey to help others is a big reason why I started this blog, so it only seemed right to sit down and write.

This will be a multi-part post. I'll share my story, and then I'll lay out some guidelines to use in your own journey (First Step and Step by Step).

Establishing care with a new healthcare provider?

Photo by rawpixel on Unsplash

I’ve been there. It can be a time of mixed emotions. Anxious. Overwhelmed. Scared. Exciting. Hopeful. 

I’d known for a long time that my doctor was out of treatment options for me to try. He did his best to help me maintain, but he had nothing new in his toolkit to offer. Despite him outright telling me multiple times over several years that this was the case, I wasn’t able to hear and accept what he was telling me. 

Honestly, I was afraid. I’d been with this doctor for 7.5 years. He was the first headache specialist I was referred to in the year following my car accident (The Battle Begins). He had helped me through so much, and I was comfortable with him.

• I was afraid of starting with someone new. 
• I was afraid that I’d have to retry failed treatment options. 
• I was afraid I’d have to prove and defend my pain and disability levels. 
• I was afraid of the monumental task that starting with a new doctor while having such a complex medical history felt like.

I had spoken with a couple doctors at patient conferences about what was important for establishing a new relationship with a healthcare provider. This helped ease my mind a little bit about what I needed to do to prepare, but it still took me a year or two to get to a place where I was prepared to take that step. 

My doctor was very supportive and kind about me moving on to a different headache specialist. He sent the referral and continued my care until I could get in with the new doctor. 

I prepared a lot at home for that new doctor, but much of it was to make sure my mind was in order... for me, having order can help ease my anxiety, even if only a little bit. 

My first appointment with my new headache specialist was incredibly smooth. I had submitted all of the new patient paperwork prior to the appointment. I never felt like I had to defend myself in any way. He didn’t question how much the pain has disrupted my life... he trusted my word. That was hugely uplifting and powerful. Since each doctor has different preferences about what they want tracked, I clarified that with him on our first visit. We also discussed expectations for communication between visits and for emergencies. 

I left that visit “grateful for renewed hope with a new specialist. Looking forward to this chapter, as it already promises opportunities to make positive changes in my life. The road won’t always be pleasant… sometimes it’ll be downright miserable… but, I have a good support team that knows I can do it, even when I’m uncertain.” 

I only saw this doctor a few times before I moved a couple states away. I struggled with separating from a doctor that was a true treatment partner. We had barely scratched the surface, and the fear that I may not find another doctor that I trusted and would be a partner in my care lay heavy on me. 

Time to start over... but on a much larger scale, as I would need a new dentist, eye doctor, and primary care doctor, in addition to a headache specialist. It felt like a heavy task, but it was no longer monumental. There was a sense of hope that getting new perspectives of my health might reveal new possibilities in treatment and quality of life. 

I chose to find a headache specialist first. My previous doctor referred me to my current doctor and continued care until I could be seen. 

My first appointment with my current headache specialist was a lot like the previous one. I submitted all of the new patient paperwork prior to the appointment. The appointment was smooth, which I attribute partially to me continuing to hone in on my experience. We, too, discussed expectations and ensured we were on the same page as one another. 

That appointment initiated a series of consults and testing to address other health concerns and comorbid diseases. I saw around 8 new doctors (in addition to testing) in the following 5 months. Each doctor needed my story, but from a different vantage point... from the vantage point of his/her specialty area. It was exhausting, but I learned so much. 

I realize that not everyone has access to a headache specialist and that not everyone will have a smooth, positive experience. There are not even close to enough headache specialists available (there are less than 500 in the United States), and most doctors don't receive much education about headache medicine. All we can do is be prepared to do our best to find a healthcare provider (even if it's not a headache specialist) that is willing to partner with us in our care. 

"The fears we don't face become our limits." - Robin Sharma

Establishing Care With a New Provider:

• My Journey
• The First Step
• Step by Step

Disability Case Manager Updates (Nov 2013)

So, I wrote this back in November 2013, but apparently didn't get it posted... and, have been away from the blogging world since then. I'm hoping to be moved to update soon, but I thought I'd at least get this one out there.

One thing that I really dislike is talking to disability case managers. Thankfully, I've been blessed with some really good ones, over the years. But, they're still asking questions that can really upset my anxiety and depression levels. And, knowing that they're just doing their jobs doesn't necessarily make it easier for me.

I talked to my disability case manager today. She was following up on how things have been going and any treatment changes. I had my second round of Botox a week ago, and have an appointment set up with my doctor mid-January. I told her that it's too soon to know whether or not the Botox will provide relief.

All of that is normal and expected... but, she also asks me every time we talk if my doctor and I have discussed what's next:

• what treatment to try next, if this one doesn't work

     or, in the case of today,

• what the plan is for returning to work, if the treatment provides any relief. 

I hate both of these!

The first one makes the assumption that the treatment isn't going to provide any relief. What a quick way to deflate your entire being. Even if you don't really expect a treatment to help, there's normally at least a small amount of hope deep down. Then, you have this external voice asking you to think ahead, as though you have everything already figured out, to when it doesn't work.

The second one makes the assumption that the treatment is going to provide relief. While that's not negative in and of itself, it assumes that the treatment will provide enough relief to allow you to actually return to work. Of course I'm hoping for relief! But, even if Botox is successful, that doesn't mean that I'm suddenly going to be able to return to work.

I responded to her in the best, most honest way I could. I told her that it depends what degree of relief Botox were to provide. And, if it does provide relief, my doctor probably wouldn't immediately have me return to work, since I have a history of treatments providing some relief for a few months and then stop working / helping.

Beating Myself Up

I'm feeling overwhelmed because I'm falling farther and farther behind with this month's blogging challenge.

My mind isn't working very well. It's been especially bad leading up to and following the second round of Botox injections I had (November 18th). Honestly, I just don't feel very well, and the stress of should's and supposed to's are simply overwhelming me. Not to mention, a wicked cold front is set to come through in a couple days, which normally knocks me down pretty hard. So, I need to step back before I just shut down. I hope I'm not away for long... I'll write when I feel moved to.

I'm asking for patience, grace, and forgiveness... from both my readers and myself.

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

Three Truths & a Lie

Today's topic is: "Three Truths and a Lie: Tell us three things that are true about you, your condition, your Health Activism, or your life. Now tell us a lie. Do you think we will be able to tell the difference?"

I have a fear of needles.
I struggle with anxiety and panic attacks.
I'm getting my second round of Botox treatment for chronic migraines today.
I'm not at all anxious about today's Botox appointment.

Well, I think it's pretty obvious that the last one is the lie. :-/ I'm sorry I wasn't more creative with this post, but my mind is pretty well occupied... trying to relax and remind myself that I've done it before and I can do it again. Prayers welcome.

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

Update on First Round of Botox

I want to share how my first round of Botox went. Let me start by linking to the process I in deciding to try Botox as a treatment for my chronic migraines:

• Considering Botox (Part 1)
• Considering Botox (Part 2)

I also wrote a post right after having the injections (in August 2013):  First Round of Botox.

So, back to how things have been the past (just under) 3 months. I feel pretty confident in saying that I didn't get any relief from Botox. Things are a little complicated because I was off one of my preventive supplements for a couple weeks, right when Botox would've been starting to help. I ran out of the supplement (due to a problem with automatic refills) and was off of it for a couple weeks. Just before I ran out, I talked to my doctor, and we decided to just discontinue because it didn't seem to be helping (after a few months). I think the increase in pain was because of stopping the supplement - not necessarily that the supplement was helping, but just the process of getting off of it. 

I've been back on the supplement for about six weeks, I believe. My pain levels have been better the last couple weeks. But, is it due to being back on the supplement? Botox wearing off? Or any number of other factors? It's so frustrating to not know, since there are so many factors at play all the time.

Will I have a second round? I'm not sure. Honestly, I have very mixed feelings about it. I don't think it helped at all (and may have actually worsened the pain for a while), but that's not to say that another round wouldn't. I don't have such negativity about it that I feel that it won't help at all, but I'm also not super hopeful that another round will provide relief. My doctor doesn't really think it'll help, but he's willing to try another round.

With that said, I'm in the interim right now. My doctor said that insurance may not cover another round because the first round didn't provide relief. I've had my doctor's office submit a request for another round to be approved by my insurance, so I'm waiting to hear back (I would need to do the second round in the next week or two).

I don't know that I really want to do another round, though.

I was blessed that our insurance covered my first round of Botox 100%. So, I think I may go ahead and do a second round if insurance will cover it. But, I'm not going to pay out-of-pocket for a second round. I've found myself hoping that God will put obstacles in place, if I'm not meant to... not that that indicates that I'll get relief if He doesn't put up obstacles, but yea.

For better or worse, that's my first round of Botox experience. I'll let y'all know, if I end up trying another round in the future.

*Update:  I just heard back from my doctor's office. My insurance has approved another round of Botox. Since my insurance hasn't changed since last time, we're assuming it'll be covered 100%. So, I'm going to pray on it, and talk to Jeremy about it today. I have November 18 temporarily scheduled, but I told them I'd let them know whether or not I'm going to go through with a second round. So, please keep me in your prayers - I need guidance and discernment for what I'm supposed to do.

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

First Round of Botox

I've been away a while because we moved into our house about a week and a half ago, but we just got internet hooked up yesterday.

First, I'm incredibly grateful for all those that kept me in their thoughts and prayers today. I feel so blessed to have such amazing loved ones / prayer warriors, and I know that it's only by God's grace that I made it through the fears and pain today (and every day!).

After some crazy-bad anxiety leading up to it, my first round of Botox went alright today. I'm so glad that I
took anti-anxiety meds beforehand. And, I listened to some advice from other that've had Botox done before - such as, being mindful to keep breathing, ask for short breaks as needed.

I'd be lying if I said that it didn't hurt, but I think part of it was that I was already ultra-sensitive because of dealing with a migraine during the treatment. The injections in the neck / shoulder areas were more painful than the others. The few (one, in particular) in my right shoulder were really bad. My right shoulder is the one I injured in my car accident and have had trouble with ever since... yowza!

Overall, I think it went as well, or better, than I expected.

I'm thankful that Jeremy was with me the whole time. He had some trouble with it and had to sit down about halfway through. I think he was taking some of my burden away from me and it got the best of him. He's alright, but it was harder for him than either of us anticipated.

They played some music of my choice, and God blessed me with songs that really helped me through:

• Blessings by Laura Story
• Overcomer by Mandisa

After the treatment, my head felt heavy, yet light. It was weird. I've been having difficulty with my balance, so definitely glad Jeremy was here to help keep me from running or falling into things as much. I came home and slept for quite a while (probably 4-5 hours).

I still have the migraine I had when I got up this morning, but it doesn't seem to have gotten much worse, which is good. I'm starting to get tired again, so I'm going to head to bed (hopefully to get some more sleep).

Again, thank you for all the prayers and support. We'll see how things go from here.

Giving Botox a Shot

I'm going to give Botox a shot (ha ha, a shot!). I've written about considering Botox before:

• Considering Botox (Part 1)
• Considering Botox (Part 2)

I'm scheduled for my first treatment on August 15 with my headache doctor.

I have to say that I'm struggling a little bit with how I'm feeling about it. I'm definitely still nervous about the needles, but I don't feel quite as anxious as I've felt in the past when I was considering trying this treatment. I don't know if it's a sense of peace that now is the right time for me to try Botox... or if it's more feeling resigned to the fact that my insurance has approved it through the end of August and I don't want to have to get re- pre-approved, so I've kinda resigned myself to the fact that now might be as good a time as ever to try the treatment.

If the treatment works, then that's awesome! The sooner, the better!

If it doesn't work... well, I guess it's just another treatment tried and failed. I'm trying to be realistic with myself about how much (or little) I'm deep-down expecting and wanting this treatment to help. I didn't like getting surprised when I was disappointed by a medicine back in May (I'll try to catch y'all up on that soon) - I thought I was cautiously hopeful, but I was heart-broken when it not only didn't work, but I had a bad reaction to it.

I'm doing my best to just take things one step at a time, always trusting my life with our Lord.

"'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'" (Jeremiah 29:11)

ER Visit - Abdominal Pain

Me, drinking the contrast for the CT scan.

On Tuesday, May 28, 2013, I ended up in the Emergency Room (ER).

I had severe abdominal pain that reached emergency level. I'd been hurting all day, but had a horrible pain episode in the early evening (luckily, it was after Jeremy got home, so I wasn't alone). Thankfully, Jeremy made the decision that he was taking me to the ER because I wasn't thinking clearly because of the pain.

It hurt to move at all - in fact, it took a while to get to the car and then into the ER simply because it hurt too much to move or even to breathe.

The ride there was incredibly painful, but we finally made it. As soon as we got inside to the ER lobby, I threw up, was violently shaking, and had numbness / tingling in my hands / arms (and I'd had bad diarrhea Sunday night and part of Monday).

They think it might've been my appendix, and they almost admitted me to the hospital overnight. My white blood cell count was really high. I had a CT scan with contrast - they couldn't see the appendix, but the area nearby wasn't inflamed like they'd expect to see with a severe appendicitis. After speaking with the surgeon, the doctor had me have an abdominal / pelvic ultrasound to check my ovaries (specifically, my right one, since that's the side the worst pain was on) - right ovary looked good, I do have a cyst on my left ovary, but he didn't seem concerned about it.

We got to the ER about 6:30 or 7pm, and were there until almost 2:30am. By 1 or 2am, most of the pain had dissipated. So, the doctor decided that with the tests plus his exams and my pain reports, that I'd be okay to go home. I was released, with the understanding that I was to return if the pain came back. So, no definitive answers - very well could be my appendix, but not sure.

It's Been A While & Neck / Shoulder Pain

I've been away... for quite a long time. I apologize for my absence. There are many things that have been happening, some of which are still being worked out. There's a lot that I'd like to share with you guys. I definitely want to get back to blogging more soon, but it may still be a little bit before I can do that. We'll see how things go... so, please stay tuned. 

At the beginning of April, I started having increasingly severe neck pain; and by the end of the month, my right shoulder started to ache deeply (in addition to the severe neck pain).

The intense neck and shoulder pain really broke me down, making me feel like I was just falling apart. I couldn't find any relief or peace. Everything came to a head, so I went to the doctor to try to help with the severe neck pain (stiffness to the point that I couldn't turn my head to the left), right shoulder pain, tingling and numbness in several fingers... it was bad.

Here's what I wrote on May 3, 2013:

The pain type and intensity are eerily similar to right after the car accident in '08 (at least as much as I can recall). I feel overwhelmed with A LOT of thoughts and emotions that race through me. The pain has made it hard to write or type... even texting. It's re-closing my world, and I don't know what to do. I keep reminding myself that I've grown so much since right after the accident, but I don't know if I can do all this again. 

I went to the doctor today. (5/3). Long story short(er), the severe neck / shoulder pain (and subsequent tingling and numbness in my right hand) could be caused by a few different things - could be muscle spasms squeezing the nerve, bursitis, lasting effects from my car accident, a muscle tear, a bulging disc, etc. It's complicated by the fact that the medical test to best narrow it down is an MRI, which I can't have because of my neurostimulator. My doctor said that there's pain in the rotator cuff, so we might be able to get rid of most of the pain and then just have to deal with the cuff. Or, meds + rest + ice could take care of it. There's so many different possible causes, treatments, and outcomes.

So, I was on muscle relaxants for a couple weeks, and took NSAIDs for a month. I also rested and iced the area. Thankfully, all of this helped, and I've gotten back to my normal levels of neck and shoulder stiffness and pain... which is still pretty bad, but no where near as horrible as it was then (and no tingling / numbness).

During this very difficult and painful time, I reached out to a dear friend, who offered me hope and encouragement. She reminded me of God's promises:

"'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future'" (Jeremiah 29:11).

She also reminded me that even when we wonder what God's purpose is for us, when we're unable to write, talk, or even pray most days... that what matters most to God is His relationship with each of us... and, even though we may want more (to be able to do more)... He only longs for us to be in and with Him.

So, when I'm hurting so badly that I can't really do much of anything and I feel worthless / helpless / etc... as long as I focus on being in the moment with Him, I'm exactly where He wants me to be... and that's what I cling to.

[Please stay tuned for more updates.]

Considering Botox (Part 2)

This is a continuation from Considering Botox (Part 1).

APRIL 6, 2013

I found out that my insurance has approved me to try Botox for my chronic migraines (I believe once between now and the end of August). My doctor's office called and let me know that they've found out that the Botox should be covered completely by my insurance (NO deductible and NO co-pay... covered 100%, done in office)!

What an enormous blessing! Of course, insurance companies change their minds all the time, so hopefully they'll hold true to their claims. But, I trust that God will provide, when / as He moves us forward.

I'm still not sure if I'm quite ready to set an appointment to start the treatment. I'm doing my due diligence in researching and familiarizing myself with the treatment itself, as well as possible outcomes... perhaps over-researching...

I find myself hesitant for several reasons:

• I HATE needles! I know "they're just small needles," but they're still needles! It's hard for me to imagine being calm through the treatment, even after taking some anti-anxiety meds.

• I'm concerned about the possible side effects / reactions that might occur. I may be variably sensitive to the treatment aspects of a medicine, but I'm overly sensitive to the side effects. I think what frightens me most is that there can be horrible reactions, and there's not a whole lot that can be done. You can't flush the system of the medication, or just wait a matter of hours of days for the medication to wear off. It's in your system for months, and it can affect every part of your body.

• [Let me preface this by saying that I'm aware that this is illogical and incorrect] There has always been some comfort knowing that I haven't tried / exhausted every possible treatment out there. I know that I haven't because there are numerous different combinations of treatments. But, it's been somewhat comforting (however illogical) knowing that I have not yet tried Botox as a treatment. It seems to have a higher chance of helping than trying to go back through and find a balance of medications and side effects that's agreeable.

• I need to get my mind right. There's a fear of it working (but side effects being really bad) or of not working (and exhausting yet another potential treatment option). This can really mess with the mind, and I know that I need to have my mind in a better place, so that I can give it a fair chance of working.

So, I find myself waiting and wondering if I'll ever know that it's the right time for me to try Botox. Will it ever feel right? I felt that having my neuro-stimulator implanted was the right thing to do, and at the right time... but, it hasn't provided the relief I'd hoped for (and actually experienced during the trial).

Can I handle another failed treatment right now? I know that's a negative way to think about it, but I have to protect myself from getting blind-sided by another failure. The same must be asked about having a treatment be successful - am I in a place that I can accept and grasp on to a treatment that provides relief? I know this may sound ridiculous to some people, but it's something that people with chronic pain really do deal with.

***************
I was looking back to see how I was thinking and feeling prior to getting my neuro-stimulator implanted, and I came across something that I wrote. It fits NOW as much as it did THEN (primarily, the first link below)!

• Anxiously Hopeful
• Anxiously Hopeful, continued

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Considering Botox (Part 1)

FEBRUARY 13, 2013

I went to my migraine doctor a couple weeks ago. I've at least gained a pound or two (finally, thank goodness!). He's going to make the pill counting issue better. We discussed Botox, again...

Talking about potentially trying Botox is a HUGE thing for me, and something I have such mixed emotions about. I'm scared to death of needles (big, small, long, short... it doesn't matter). It's never felt right to try Botox (not just because of the needle phobia). I know a lot of people don't understand that at all, especially since I've had a neuro-stimulator implanted (i.e., surgery), but haven't yet tried Botox. But, it just hasn't felt like the right thing to try / the right timing.

Perhaps I'm starting to feel that it might be time to give it a try yet, but there are still hurdles ahead. My anxiety skyrockets when I so much as think about it. But, I don't want to continue to have chronic, debilitating migraines and never even tried Botox as a treatment. I believe, though, that treatments may work differently at different points in time... maybe it wouldn't have provided migraine relief had I done it a few years ago, but maybe now it might. Who knows?! My doctor's office is contacting my insurance company to see if they'll cover it, how much it'll cost, etc. Then, the ball will be in my court.

This will be continued in Considering Botox (Part 2).

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Weary

I've been so weary.

I'm tired of counting pills to make sure I can at least partially treat my migraines until I can get my next prescription. I'm tired of missing family events, including my now 6-week old nephew, Evan. I'm tired of having to reschedule and/or cancel plans. I'm tired of the often excruciating pain. I'm tired of feeling so down. I'm tired of struggling to eat, which is a daily battle. I'm tired of the anxiety and subsequent feelings of helplessness regarding some family stuff going on.

I'm just tired.

Migraine, Migraine, Go Away... Please!

I'm feeling pretty down right now. I've been struggling with migraine(s) that have been nearly non-stop for 5-7 days... it's hard to tell when one stops and another begins. I called my headache doctor today (so as not to get stuck over the weekend), and I feel like he just brushed me off - I was told that he doesn't have anything else to try and to go to the ER if it persists or worsens.

I've gone into this doctor for emergency care several times before (same meds they might give me at ER, but in a much more migraine-friendly environment, with my own doctor, and a third of the cost).

These words came crashing down on me... so disheartening, especially while I've been trying to fight this one off all day without meds because I've maxed out for the week. I can take more of my meds tomorrow - and, if I'm feeling this badly then, I'll be taking the higher dosage (an option my doctor has left to my discretion)... which should lead to sleep, and hopefully relief. Otherwise, I guess I might be going to the ER.

Another Update

I know it's been quite some time since I've updated. I'm not sure that I'm back yet, but I wanted to pop in and let y'all know how I've been.

After my ER visit on July 4, I continued to experience non-stop pain. I went to an emergency appointment with my doctor (rather than going to the ER) on July 11. That finally broke the 1.5+ week migraine - thank goodness!

Based on these two emergency visits in such a short period of time, my doctor moved my next appointment up from September to July 31. I don't really feel like it was a very productive appointment, though. Then, on August 2, I had to make another emergency appointment with him. They gave me a different cocktail of meds (because I'd had so many side effects with the previous visit), and it knocked me out. I felt significantly better the next day, though it was a day with waves of the horrible pain I'd been experiencing non-stop.

After never having gone to the ER (not to say that there weren't times that I should've gone) I had 3 emergency visits in a one month time-frame - Yikes! But, I've finally chilled back down to a mix of productive and non-productive migraines (about 3-4 of each, per week).

We tried to cut my night meds in half because of concern that it was affecting my vision. Well, that sent me right back into my insomnia problems. I was getting to sleep way too late, and sleeping late into the day. After a week or so, we increased it back up to a whole pill each night. I'm still not back on the improved sleep schedule I was on prior to the changes, but it's better than taking the decreased dose.

Anyway, that's some of what I've been dealing with over the last couple of months. I hope y'all are doing well - know that you're in my thoughts and prayers often.

An Update (Trip to the ER)

I apologize for being absent. I've been struggling so very much with migraines lately. I had one that was non-stop for over a week - I think we've finally been able to get it down a notch, so it's still migraine-level, but it's manageable right now. I tried all of the treatment options I have from my doctor (four different medicines / medicine cocktails), but with no relief. The pain just continued to worsen.

Wednesday (July 4th) was especially bad. Nothing could help relieve or distract me from the pain. I was crying so much (uncontrollably) in the evening / night - very out of character for me. We decided to go to the Emergency Room - we went to a stand-alone ER (rather than the ER at a hospital, since the closest one is 30+ minutes from the apartment), which is only a mile or so away from the apartment. I was so scared and hurting so badly, and I hated having to leave Honey at home.

The ER wasn't all that helpful - they didn't ask what meds I was on, give me fluids, ask me questions about the pain / symptoms, etc. The doctor came in and said, "Well, I can't prescribe Demerol" (I'm guessing he must've seen something related to my insurance because we hadn't mentioned it Ummm, I never asked him to. I told him that I'd already tried Demerol for this migraine, and it hadn't helped.

They came to give me "meds for the pain and nausea." I had to ask what they were about to give / inject me. They gave me Zofran ODT and Dilaudid. We stayed there a bit to make sure I didn't have a reaction, and then they sent me home (told me to contact my doctor, but to go to a hospital ER if pain continues / worsened). We were only gone for 1.5 hours, so that was great. Thankfully, the meds dropped my pain for a 9 to an 8. I took my night medicine and was able to get a few hours of sleep at a time through the night.

But, the pain continued... Jeremy called my doctor the following morning, and he started me on a two day regimen of corticosteroids. I finished those a few days ago, and I've still been dealing with the pain. I used one of my migraine meds on Sunday, and I've been able to keep the pain to a manageable migraine level (only manageable by not really doing anything but resting) for the past two days. I'll probably need to contact my doctor again tomorrow... I just want this wretched cycle to end!

Drug Recall (Excedrin) Update

Back in January, Novartis did a voluntary recall of several of its over-the-counter medications - Drug Recall: Excedrin, NoDoz, Bufferin, Gas-X. It's July, and these meds still aren't back on the shelves.

The drug recall has spurred a black market for Excedrin formulas. A bottle of Excedrin is going for upwards of $200 on sites like eBay! I suppose this blows my mind even more because Excedrin does absolutely nothing for my migraines. But, I know there are people out there that find it to be the only medicine that helps their headaches.

In a statement, Novartis said it was "working very hard to return products to store shelves." Production is expected to restart production on a "line-by-line, product-by-product basis" to assure quality, and hopes to start restocking some products in the second half of 2012.

Anyone considering purchasing these medications online needs to proceed with extreme caution. Purchasing meds online is risky, since it's not being controlled and you can't be sure of the supplier. Hopefully, Novartis will get these products back on the shelves in the next few months.

Migraine Awareness Month Blogging Challenge #15: Migraine Genes (Prevalence in Women)

New research has identified a specific region on the X chromosome as playing a role in Migraine. Please take a few minutes to take a look at these two articles that discuss this important new research - Migraine Genes: X Marks the Spot - and - New hope for migraine sufferers.

Here is an excerpt from the first article that helps outline the significance of this type of research:

"Finding these genetic links to Migraine is especially important because we don’t entirely understand the pathophysiology of Migraine and there have been precious few studies to help us figure it out. Learning more about how and why Migraine attacks occur will help researchers find or design specially targeted treatments for those of us who suffer Migraine. It may also be the smoking gun we need to finally turn Migraine disease into something we can diagnose by testing for something instead of simply excluding everything else we can think of to reach a diagnosis. This is called a diagnosis of exclusion and is currently the only way physicians have to determine if a patient truly suffers from Migraine disease" (Migraine Genes: X Marks the Spot).

If you remember from high school biology, all females have two X chromosomes, while males have an X and a Y chromosome. "'These results provide more support for the role of the X chromosome in migraine and may explain why so many more females suffer from the disorder,' said Professor Griffiths" (New hope for migraine sufferers).

This research is a very important step in moving forward in Migraine diagnosis and treatment - "the research provides compelling evidence for a new migraine susceptibility gene involved in migraine. The study also indicated that there may be more than one X chromosomal gene involved and implicated a gene involved in iron regulation in the brain" (New hope for migraine sufferers).


This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).