Tina's Story: How Migraine Has Changed My Life

By cissy2018

1 min read

I have been suffering from migraines since July of 2017. When they started they just kept getting worse along with Vertigo. My MRI showed the smaller vessels of my brain are diseased so I been seeing a neurologist since. We have tried medications now we are trying the b2 vitamin and oxygen therapy when when hits. I have a very hard time cognitively and physically functioning. I try my hardest to deal with this problem but it is hard.

I have migraines start up daily and once I put the oxygen on it does help but this is not how I want to live my life. I can’t go very many places because I am always am in a dark room. Once I get a bad attack that is pretty much it for me I suffer for the next 2 to 3 days. I get a two day break and boom I am hit with one again. It’s hard for me cause I don’t think very many people understand how I feel or how this has effected my life. It’s not like I can take a few aspirin or Tylenol and a few hours later I am better. My head feels as though I been in a car accident over and over again. Right now I am highly thinking I should do the injections. My dr told me I will never rid this only maybe by 50%. It’s like a nightmare and I wish people around me would understand how this has changed my life.

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Holly Harding Moderator & Contributor
Hi Tina- I'm so glad you shared your story here because you are NOT alone and here you've found a community of thousands who completely understand the way migraine is capable of changing a life. In reality there are millions of us. 36 million in the U.S alone who are navigating migraine right along with you. Many of whom, just like you, have some form of chronic migraine and are in pain more often than not. It does impact just about every aspect of life; social, professional, and family. Just as you said, it impacts our ability to think clearly and navigate the world as we wish we could. Migraine is the 7th leading cause of disability, so, many of us do spend our days in controlled darkened environments- just as you describe, to avoid triggers causing or worsening the pain. Migraine is isolating by its very nature, so we have to push against that dynamic to get the support and compassion we need and deserve. There are community members here who have just started experiencing migraine and others who've been living with the disease for 60+ years. The perspective, lessons, and support that we share with one another priceless. We also share the frustration you mention- that people in our real lives don't fully comprehend what we're up against. It's tough stuff and therefore becomes more important to find ways to get the support we need- whether or not that's through online communities or support groups, counseling, or with one or two unique friends who seem more likely to be supportive. Perhaps with them, you might spend some time in an attempt to increase their awareness about the disease- sending them articles about the fact that it's a complex neurological disease and not just a headache- forward to them anything that resonates with you to help increase their understanding/compassion about migraine. Please know you are a part of a community here of many who are thinking of you and are glad you are among us. If you do decide to try the CGRP, and you are lucky enough to experience a 50% decrease in frequency, that would still be a significant improvement, given you have them chronically. I hope you'll check back in and let us know how you are.
1. cissy2018 Member
 Holly thank you so much for responding to my story. It’s been A very rough road for me and I continue to suffer daily. I am lucky to have two days with no migraines. I am pretty wore down mentally and physically. My body doesn’t know if is coming or going.
2. goggindj19 Member
 Cassie I’m so sorry you are suffering with migraines that are so debilitating. I encourage you to seek out a better neurologist if you haven’t already. I don’t know where you are but looking up neurologists in your health insurance plan and then Googing him/her is a great way to find someone else. Also discussing how you feel with your primary care Dr and asking for a referral to another Dr is a great way too to find a Dr who fits better with you. Also looking for the head of neurology at a hospital that also has a private practice is a way to find one. I recently found out my neurologist is head of neurology at his associated hospital. He is wonderful. It took me many years and the help of multiple Drs to find my healthcare team. I am happy finally with the Drs I have. I hope you can find what you need if you haven’t already. Don’t give up hope. There are so many of us migraineurs out here who have been right where you are. The key is to not give up. I know the temptation is there because I almost did, but my faith and family helped me to trudge Oman’s keep searching for the help I needed. I can truly say that my life is better because of my persistence in spite of adversity. Hang in there Cissie!
cappucinno Member
Yours is a hard story to read. One, because of all the suffering that you are doing and two, because it brings back horrid memories of how I lived for years before my pain got slowly better and better, over about 30 years (I have been suffering a total of about 45 years total). You have my sincere sympathy for all you are going through. If I were you, I would definitely try every possible drug there is, as I did. There are many many drugs that are used in different ways. I am blessed that I have a wonderful Neurologist for over 20 years now and she is always upbeat and compassionate and supportive and would NEVER tell me something will not or might not help me before it is tried. I don't know, but do you think you should try a different neurologist? My thoughts are with you and I hope that today, Thanksgiving is a good day for you.
cissy2018 Member
Hi thank you so much for replying. I do think I need to try a different neologist. In fact I seen the nurse practitioner a month ago and she was more understanding and compassionate then he was. I am suffering I get maybe a two day break. I have new symptoms my face heats up tthen boom a migraine. I been having rapid eye movements well I am awake. One side of my head on the back has inflammation according to my regular doctor I seen a few days ago. She wants to no what the Nurse Practitioner has to say about the swelling. Today I have the rapid eye movements and some pain but not as bad yet. So I put the oxygen on to help prevent a bad one from coming on. It is nice to have people to talk with that understand my situation. Most think it’s juat a headache it will go away if you stop thinking about it. It isn’t that easy. Today is thanksgiving day I want so much to enjoy the day without getting sick. Thank you so much for responding to my story. Have a wonderful blessed Thanksgiving Day
myraquilt Member
I use Emgality for migraines and rarely have had them since I've started on this medication. My neurologist said that Botox isn't really effective. I've been using Emality for approximately 5 months. Usually when it gets close to the time for my injection I'll start to get nagging headaches but they're not migraines. As far as I'm concerned, this new medication is definitely a game changer because I'm now almost headache free. Dealing with daily episodic vertigo attacks is enough for me to contend with and I too used to spend days in my bedroom for hours on end in the dark.
1. Peggy Artman Moderator
 <inline-mention user-id="3841618" username="myraquilt"/> , thank you for sharing your story. It is good to hear that Emgality has been helping you so much. Regarding Botox, I don’t know if your doctor was just generalizing, but many people find it helpful. The problem is that you won’t qualify if you have less than 15 headache days per month. But if you don’t need it, that is great. ~ Peggy (Migraine.com Team)
lightweaver Member
I used Oxygen for Cluster headaches and my migraines better. I am going to check into B2. Thanks
1. Allyson.Ellis Community Admin
 lightweaver, thank you for joining the conversation. I'm glad your cluster headaches and migraine symptoms have been helped by oxygen therapy. I thought this two-part article series about B-12 might be of interest to you: <a href='https://migraine.com/blog/what-can-i-expect-from-b12-testing-part-1' target='_blank'>https://migraine.com/blog/what-can-i-expect-from-b12-testing-part-1/</a> Before beginning a new treatment, be sure to consult with your doctor to verify that a B-12 supplement is indicted for you. Please keep us posted on how you are managing. Wishing you a gentle day. ~Allyson (Migraine.com team)
bjm0822 Member
Keep trying. If your doctor is suggesting injectables, maybe that’s the route you want to go. I did one kind and now am one another. Even a 50% increase is a great git and amazing in how you can lead a different type of life than you have been.