Migraine Update: New Neurologist & New Preventatives

Migraine Update - Chronic Migraines and Headaches - Trokendi XR

Hey friends!

After my last update about feeling discouraged in my migraine journey I have finally found a new source of hope, a new Neurologist! This Neurologist has his own practice separate from the hospitals. I can’t tell you how refreshing it is to be seen by a small practice instead of a hospital. I have seen this new Neurologist a couple of times now and he listens to what I have to say and is open to trying different treatment ideas when others fail. 

During my initial consultation I explained to him how frustrated and hopeless I was feeling because of my migraines and headaches. I always cry when I’m explaining how I’m feeling because I just feel so depressed about the situation. I think he could tell how desperate I was for a solution and started coming up with a treatment plan right away.

He prescribed Trokendi XR which is an extended release version of Topamax, an anti-seizure medication. I want to do a full post about my experiences on Trokendi at some point but the short and sweet version is that I spent the next six weeks or so pretty miserable. Trokendi can be a lifesaver for many people with migraines and I was really hoping that it would work for me. Unfortunately, it also has nasty side effects that left me feeling worse than normal. 

I went back yesterday afternoon to see my Neurologist to discuss Trokendi and my next steps. After explaining to him just one of the many side effects he immediately decided it was time to wean me off. I was so anxious to visit him yesterday because I so badly wanted to stop taking Trokendi but my old Neurologist would have wanted me to keep trying. This new Neurologist listened to how miserable I was feeling and decided to try something else. I honestly think my old Neurologist scared me away from doctors and now I have this fear of telling them how I feel. 

The new plan is to try a beta blocker and a round of steroids to break this headache cycle that I’ve had for almost a year. I also have to wean off of Trokendi too. I’m a little nervous to start the steroids but I’ve read that they can be miracle workers for people suffering from rebound headaches. 

I’m feeling hopeful because this new Neurologist is willing to try new things to lead me towards a pain free lifestyle. He listens to what I am saying and how I’m feeling and never rushes through my appointments. If I have questions I can always call his office between appointments and talk to him. It’s been a whirlwind to get here but I think I am at least headed it the right direction now. 

The hilarious part is that the other hospital in my area is finally willing to take me as a patient and has graciously booked me an appointment for January. I’m planning on cancelling. I think I need to be done with hospitals for awhile. 

What I’ve learned through this whole process is that sometimes you just have to learn to be your own advocate. I’ve been fighting for a pain free quality of life for eight years so far and I will continue to do so for as long as it takes. This journey isn’t easy and it will never be easy. It’s going to be painful, annoying, and depressing but the goal is to one day be able to travel and have a family with Brett. To me, that goal is worth it. 

Thanks so much for reading!

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Migraine Update: Feeling Discouraged

Migraine Update: Feeling Discouraged

It’s been over a month since my last migraine update and honestly not much has changed.

I saw my primary care doctor about 3 weeks ago and she referred me to a new neurologist at the other hospital in my town. There are two hospitals where I live and you either go to one or the other for everything health related not both. I have always gone to one but my doctor recommended that I try the other.

So, she sent the referral to my neurologist who had his medical assistant call me. Apparently, he can choose not to discharge me from his care if he feels that he can still help me. The MA asked me for the reason I wanted to change doctors and I was really honest with her. 1. I have been seeing him for over five years and we have only tried two treatment options and neither worked. 2. I want a second opinion.

The MA was supposed to call me back but that was over two weeks ago. I called yesterday for an update and he hasn’t even looked at my file yet. I tried to explain my frustration and pain but I really felt like it fell on deaf ears. To make matters worse, the new neurologist I wanted to see has switched to my current neurologist’s practice which will make the switch even harder. Apparently it’s rare that they will allow you to switch neurologists within the same practice and it sounds like that will be the case for me.

Yesterday I got off the phone and cried. It’s so discouraging to feel like you are headed in the right direction one second and then back at the beginning the next. This journey has not been easy and I’m sick of pretending like it has. I pretend everyday that things are okay and I feel fine. I don’t know how much longer I can keep doing all of the things I am doing. I try to put on this brave face but anytime someone asks me how I am feeling I fall apart.

Once again I am faced with a couple of options. The first is that I go back to my neurologist and try to talk him. I don’t think that this will be happening. The second is to find another neurologist at the other practice and see if he/she is accepting new patients. The third option is to finally make an appointment at the University of Michigan Neurosciences which I have been trying to avoid because of the distance and potential cost.

I have not had a headache free day at all in 2018 and that makes me angry. I’m not a neurologist and I have done everything that I can on my own to fix myself. I need a professional’s help and that professional will not be my current neurologist. I also suck at confrontation and am having a hard time advocating for myself. Hopefully if I do have to go back to my neurologist I can find a patient advocate to help me.

Anyway, that’s where I’m at with my journey to a pain-free life. It hasn’t been easy and I doubt it will be easy at any point. I am just hoping that somewhere down the line I can find a solution that will work for me. I’m trying not to give up hope. I am not currently taking any medication at all besides still overusing ibprofen in order to live a “normal” life.

Thanks for reading!

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Recharging the “Introvert Battery”

Introvert Recharge

Happy Friday!

I don’t know about you but I am exhausted! I have been going nonstop lately and I am in desperate need of a break.

“What’s an introvert battery?” you ask. Great question! I don’t know if this a real term but it’s something I use to explain how I feel. If I know I’m going to be in social situations I spend some time alone to recharge my “battery” before needing to talk and interact with people. After I’m done interacting I go home and sit to recharge myself for the next outing. Being social takes all of my energy sometimes.

I’ve talked many times about being an introvert and one of my most prominent introvert tendencies is the need for alone time. I have had very little alone time as of late and need to recharge my battery. By recharge I mean not be around people for awhile.

I hate being “on” all of the time and I need to switch myself “off” for a while. I’ve been a little quiet on the blog lately just because I feel so overwhelmed right now. It’s so hard to explain this to people who don’t experience the same feelings of anxiety towards social situations. Brett tries really hard to understand but he loves being around people so he struggles to realize that I can’t do as much as he can.

Sometimes I wish I could have a personality transfer because these periods of my life suck. It makes me feel selfish and ungrateful when I have to say no to friends and family that want to see me. But if I don’t recharge soon I will crash. I’ve crashed a few times before and it’s not fun and I end up feeling guilty about it for days. Our wedding day took a full introvert battery and I crashed at the end of the night because I was so overwhelmed and exhausted.

Do you ever feel this way too?

Thanks for reading!

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Migraine Update: Decision Time & Leaving my Neurologist

Chronic Headaches and Migraine
Hey, friends!

I finally had a Neurologist appointment last week after being discharged from PT almost a month ago. I thought about writing this after my appointment but I just felt so discouraged that I cried in my car before forcing myself back to work.

Basically, my Neurologist didn’t even read my discharge papers and wanted to put me back on the same medicine I was on before. I put my foot down and told him no because I was on it for YEARS with very minimal results. He was in such a hurry to move onto his next appointment that he didn’t even listen to what I was saying. He prescribed an anti-seizure medication that is crazy expensive.

I am managing just fine right now without any medication. I still have a headache every single day and migraines a few times a month. I really want to try out acupuncture or a chiropractor before trying the prescribed medicine.

I think I have made a big decision though. I don’t want to see this Neurologist anymore. I don’t know if this means seeing another Neurologist or finding a headache specialist somewhere else. All I know is that I can’t justify spending $200 per visit to talk to a brick wall anymore.

My old physical therapist called me on Friday to recommend a book called Grain Brian which apparently goes into how gluten and sugar work with our brains. I ordered it on Amazon and am looking forward to reading it. I really do not want to give up Gluten though.

I want to spend some more time researching before I decide what my next steps should be. Here’s the list of what I am researching:

  • Acupuncture
  • Chiropractor
  • Elimination diet (gluten, dairy, etc)
  • Botox

Things I’ve already tried:

  • Massage Therapy (will do again)
  • Physical Therapy
  • Preventative/Abortive Medications
  • OTC Medications
  • Basic elimination diet (cheese, red wine, etc)
  • Trigger Identification

For now I am just taking it one day at a time and trying to remain positive 🙂 I think things will be much better once I ditch my current Neurologist and find someone who will actually listen and try to help me.

As always, thanks so much for all your support and feedback! I have loved reading your suggestions and have a running list of things to try based on blog comments.

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Migraine Update: Discharged From PT

physical therapy, migraine awareness month, chronic migraine headaches, treatme

Hey, friends!

I took a sick day today for a migraine and slept on and off all morning and afternoon. If you read my Migraine Story you know that my Neurologist recommended physical therapy and weaned me off of the preventative medicine that I’ve been on for years.

Well, my headaches have been terrible since weaning off of my medicine. I have had to take ibuprofen four times per day in order to dull the pain enough to go to work. My long-term goal is to not need to take any pain medication unless I have a migraine because it’s extremely bad for my body.

So I’ve had this migraine for about four days now and haven’t taken any medication in 30 ish hours. The reason I’m not taking anything for my migraine is because I know that I’m having rebound headaches which are caused by overusing medication. I need to get to the root problem which means stopping any rebound headaches.

Today was also a scheduled physical therapy day for me which I did not want to cancel. I went to PT expecting to do the stretches I have been practicing and maybe learning some new ones. My physical therapist is awesome but she knew that our appointments were not helping me reach my goal of being pain-free.

I didn’t expect to be discharged today. I didn’t expect to cry over being discharged. I didn’t expect to feel a wave of hopelessness when she told me that she didn’t think she could help.

I did feel like she heard me and believed me. I felt like she wanted to help me find an answer. She empowered me to not take “no” for an answer from my neurologist and doctors.

She will be sending a note over to my neurologist with her treatment recommendations which include a pain clinic or headache institute in either Ann Arbor or Chicago. I am doing my research and will talk to my family and doctors about the next steps. I’m sad that another door has been closed but I am hopeful that another will open very soon. My physical therapist reminded me that on the outside I look healthy but I need to remind people that I’m still suffering.

I did take away one important thing from physical therapy that I wanted to share with everyone. I know that I am extremly lucky to not have a brain tumor or a terminal disaese. But just because I can’t be “diganosed” doesn’t mean that I’m not still fighting for my life. Every day I am fighting for a quality of life that doesn’t involve constant pain, sleepless nights, and bottles of medication. I am fighting for a life where Brett and I can start a family which is currenly not an option. I am fighting to travel and spend a day at the lake with my family like a normal twenty-something.

I’m not asking for a miracle. I’m just asking to feel okay again.

June is migraine awarness month. Hopefully me sharing my story can help others who are suffering the same fate that I am. I’m not alone in this and I won’t stop fighting for myself and everyone else who is impacted.

I’ve ordered some books and will be spending the next few weeks researching my next steps. Let me know if you like these updates and want to stay informed on my treatment options!

Thanks so much for reading!

 
Lifestyle Blog, Life of Hayley

 
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