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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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

 
Photo by Imani Clovis on Unsplash