This Illness has really changed how I look at everything. My 24/7 migraine symptoms are a little better but I’ve developed severe anxiety and agoraphobia over the past 16 months. There has been nights where I cry to god to provide relief and get me out of this strange looking, distorted, cartoonish world I’ve been living in. I always feel slow and some level of stupid. I used to be Christian but I might be leaving that faith. Why would god do this to us. I get no answers from him. I’m sorry if this offended anyone, I’m having a really shitty week. My head feels like it’s a balloon and i feel incapacitated and dumb
Hi Mike, It is heart-wrenching to read how desolate you feel… and is so familiar to me and so many others. I remember one time in particular; it was my birthday and hubs thought it would be so nice to camp for my birthday since it’s one of my most favorite things. I had a horrible VM day, did not have a diagnosis, so I was unmedicated. Every time the camper rocked when he walked across the floor I felt like I was being thrashed around violently. He walked outside to tend to the camp fire and I went into the restroom to hide and absolutely begged and pleaded God for mercy to send healing. I had hit rock bottom.
God did not send healing that day… or the 9 months prior or the next few months after. However, I have found healing and slow progress for the past year and half. I thank Him every single day for healing mercy and am so grateful. I never doubted God but I will tell you that I did not understand “why me”. I still don’t know “why me”… but I do know that without Gods grace, I wouldn’t be where I am today.
I am so sorry you are suffering…
I too am sorry that you’re struggling so much right now. I’ve been there. All MAVericks have. MAV is a crisis on nearly every level of who we are from the physical and material to the emotional and the spiritual. It strips you down to the core of who you are and can destroy you or remake you better. I think for almost all of us, it is the latter, though it takes much patience and fortitude to get there. Fortunately, MAV may take away a lot of things but our attitude - our response - is something we have complete control over. (Much like a diet, that controlled response can and maybe should slip a little sometimes. Enjoy a chocolate pity party truffle on occasion.)
I know what it’s like to lose your foundation, your world view, your hopes and dreams for the future, your very identity. I have spent way too much time in suicidal thoughts and recriminations, in utter hopeless desperation and grief, especially most of last year as I sent my successful business into a controlled crash and risked all that hard earned progress in order to save my own life, or at the least - my sanity, because MAV forces hard choices. 2019 was a very painful year. I understand the long term impact to your psyche - and your finances.
There have been times when I’ve questioned my faith (and it’s not something I’ve talked about here because I view faith as a private, intimate matter between each of us and the Divine - however you personally define that). But I have not abandoned God, because I do not feel abandoned. If anything, when I’ve felt most desperate, when I’ve cried out to the wind and given up completely, that is when I most feel held. But I have to give up control, abdicate totally to finally hear and feel that thing that is beyond myself. It is humbling beyond measure.
I feel mightily challenged. Job level challenges and like you, some Job level of indignant anger and helplessness. We are all blameless and yet we are beset with on-going and unfair challenges and tribulations that will not end. (Though they can get very much better.) How can you not curse God in that circumstance? There are a lot of times I’ve spent starting at the ceiling - it might as well have been the belly of Jonah’s whale (or big fish in Hebrew) - wondering if I’d ever see the light of day again. (Spoiler on that one - right now, I’m in the sunshine and grateful for it. I thought I’d always live in the dark but I was wrong. You, too, will see the sun again.)
Despite two decent references just there, I’m not a great Christian. My dad was a minister when I was a kid - much more orthodox and rigorous than the formal Southern Baptist training he received at the Bible College. Fear and shame were meant to be our dominant emotions. They still are if you listen to him. He has a very black and white, painful sort of belief system that is meant to subjugate. It is a wonder my faith survived. But it did survive, mainly I think because faith isn’t a system of beliefs you ascribe to, like buying a particular brand of car or working out stock options. Faith is an emotion, like love. Nobody needs to tell you when you are in love. And, if you listen in your heart, you can tell that you are loved. There is more there than you can see. I survived my ugly childhood because of a child’s faith and because even in desperation I could still find a place inside myself where God dwells. I survive MAV the same way. I don’t know much gospel, but I do know God. I can still hear the still, small voice, when I get outside my own box and listen for it.
I have actually come to see MAV as a blessing rather than a curse. I also see it, paradoxically, as a direct answer to prayer. It sounds crazy, I know. Several years ago, though after I had MAV but before it became a chronic disability for me, I asked God to make me a better person. I asked to have my ego torn down, to have my assumptions questioned, to become a more authentic person. (Be very careful what you ask for because that works in mysterious ways thing can be a real bitch.) MAV seems to fit that bill exactly. MAV has taught me so many lessons. I have learned humility, kindness, compassion, empathy, strength through vulnerability, patience, acceptance and eventually, I was reborn. I don’t mean the born again kind of reborn. I mean as a person, a spiritual entity on this earth. I had to give up my ego, my assumptions, my control. In return, I learned who I am. I’m living a kind of freedom I would never have thought possible. I am loved and I am enough as I am without the Type A hard driving job, the reputation, the material trappings. I learned to give up my expectations and not care what anyone thought. I learned that failure was an ok option, because I’m here to learn. I’m better for MAV. And because of MAV and the lessons I’ve learned, I am more resilient to handle the things that are happening in the wider world right now. Because of MAV, I am ready to share my new abilities with others - my ability to manage trauma, my resourcefulness, my compassion, my patience and fortitude, my empathy, my strength in vulnerability. I feel blessed.
‘The Hasidic teacher, Rabbi Bunam, said that ’ A man should carry two stones in his pocket. On one should be inscribed, "I am but dust and ashes ". On the other, “For my sake was the world created”. And he should use each stone as he needs it.’ The experience of the Whirlwind has taught Job to use the first stone. But what we need, and what the book of Job tries, with only partial success, to teach us, is how to use them both together. (https://spot.colorado.edu/~morristo/GodsAnswerToJob.pdf)
With love, Emily
Hi Mike, I actually haven’t believed in a God since I was a kid, but when I was rolling around along the bottomless pit of MAV I certainly wanted to believe. I developed 4 simple reminders and put them on a poster next to my bed. They are nothing special philosophically speaking, but they meant something to me and kept me going:
- Never Give Up - By that I meant in life in general. A quote that someone said that I really, really like: “as long as you’re still breathing there is more right with you than wrong with you”. I just had an old childhood friend (not close now) commit suicide a week ago and it made me so sad because I knew exactly how he must have been feeling.
- Stay Connected - Community, family, friends, etc… It is super important for humans to have connections to other humans, and that’s what this site if for. It’s what keeps us alive and keeps us going. I’d probably prefer to believe in God so I can go to church and be around more good people. I bet you can find some people at church that have been dizzy!
- Do Your Best - With MAV you do everything life demands but you do it so much worse. Walking/driving to work can completely empty your tank. How about scrolling through lines of computer code all day??!! Tough luck, that’s how you make money! I don’t have to complete everything successfully, just do what I can - do my best and if I get fired then OK I’ll try something else.
- Don’t Struggle - With chronic illness you kind of have to go with the flow. There are some battles you can pick and win, but mostly its just surviving day to day and following treatment plans as best you can. This one was really what I looked at when I was really pissed about getting dealt this shitty hand.
Anxiety was truly the epic battle I had with MAV, I know exactly how you feel. Even if you get anxiety under control for a bit you don’t really feel much better because then you’re depressed. It’s just a constant toggling between the two! Just keep going and trying new treatments and stay connected with people.
I am close to 4 years in and doing very well (near 100%). At 16 months I felt the same as you for sure.
I’m not a believer. I’m still suffering.
Whether you have faith or do not have faith the illness does not care or discriminate.
Falling out with your faith will not change your physical suffering, but if it can bring comfort to you in other ways then that is surely a good thing.
I love your answer Emily and I can so relate. After going through this MAV hell for nearly 3 years, it is such a humbling experience, traumatic, frustrating, disappointing the whole gamut of emotions. However I would say I am a changed person after going through this experience. I now feel much more empathy for people with chronic diseases. I am more patient. I let go of trying to be perfect. I don’t worry about small things as much. I have more clarity than before, I know I have to stop and listen to my body and rest. I think MAV showed me my humanity, it showed me where I was forcing things that weren’t right for me. I was pushing myself very hard before MAV, I didn’t love myself, I was running away from dealing with painful things. As much as having MAV was one of the worst and darkest times in my life, it taught me so much
Yes, that is so true. When you’ve had mostly a clean health history it’s really hard to understand how someone can be so messed up inside but look totally normal. I remember before MAV not fully embracing my mother’s fibromyalgia diagnosis, thinking it was maybe more of a mental thing or something that wasn’t quite real.
Thank you for your reply. I need to start looking at the positives that i still have I my life, which I absolutely do. But it’s incredibly frustrating trying to do that. I am still thankful for what I can do and I could have it worse. I just need to get closer to god
Thank you for your reply Erik. I’m glad that those mottos keep you going. I am glad you have reached a recovered state!
Hi Emily, thanks for your long answer. That’s a lot to digest. I’m glad that you found positives in your illness. I have also found some. It has definitely taught me many life lessons and I feel so mature for my age. (I was given this at 19). I guess this is good and bad. It’s hard to try to make friends my age because they seem really blind to the big picture in life, which of course is not there fault, and they just like to party and have fun. I feel like I am in the acceptance stage of this. Some days I feel it has brought me so close to god but other days it’s hard to believe there is a god. Either way, I will continue to have faith and hope for everyone on here. Thanks again
Hi Mike, I’m sorry you’re wrestling with this. But I think you’re in good company here. I am relatively new to MAV. Diagnosed by my neurologist after experiencing vertigo that didn’t seem to go away, in November of 19. I will say, this has not shaken my faith in God. I am a person of faith. I currently have chosen not to take medication for the MAV. Initially I felt dealing with the condition was easier than the “cure” of some of the medications and their side effects. I thought I might have been well on the road to recovery after 6 months, but as of three weeks ago, had a nasty set back. I experienced a severe case of vertigo while home alone, that left me literally calling out to God and begging for His Mercy. Unable to walk, crawling on my knees. It was a pretty humbling experience.
I feel like I was catapulted back to square one, after this last attack. All the progress that I had made,I felt was gone. Back to the ADHD brain. Which frustrates me. Back to doing my vestibular exercises. I don’t condemn nor do I question, why this has happened. I just accept that this will be a way of life. I try to watch my diet. Try not to eat foods that will trigger a migraine. I take a magnesium supplement, and drink lots of water.
I wish you well. I think the progress is slow, so patience is the key. There will be good days and bad days. So you might just want to roll with it. But keep faith, that things will eventually get better, in time.
I can feel how you are suffering and wish I could offer something new to help alleviate some of the despair. Mostly I would echo some of the thoughts of some of the other wise and kind folks here. I have spent many days and nights over several years crying and raging about what this illness has taken from me and my life—after I had worked so hard to create a life that I loved and valued!
I remember reading Erik’s kind reply and his four principles on the very first time I posted to this site and just crying in relief for such compassion. Unfortunately you have to extend this compassion to yourself every day, because it’s unlikely that many around you will understand what you are going through.
With luck there will be at least one family member or friend that you can be honest with and who will at least hear you when you talk about not feeling well. I found that a lot of my friendships did fall away—it was just too hard to explain, and to say no to everything everytime—but a few remained, and I have been lucky to have a kind spouse. A few connections with others are enough to sustain a meaningful life, even if it isn’t the life you ideally want or envisioned yourself. It can still contain love and the connection that gives life meaning, and that can sustain you through the difficult times.
The evidence does seem to show that this illness frequently gets better over time with treatment, even if it feels like this couldn’t possibly be the case now. It is no easy road, as I’m sure you know, but something as minor as a change in dosage of medication can make all the difference. I’m currently taking three different medications, arrived at through trial and error via three different doctors, and I’ve seen a fair bit of improvement. I’m so sorry that you are suffering but please remember that your life has value and that science would show that eventually, there will be some relief for you.
migrainemike, all of the feeling/emotions you are experiencing are very similar
to my feelings. I have had some very dark/unhealthy thoughts and like you prayed and prayed but it felt like I was not getting anywhere. Then one Sunday my pastor spoke on Hope and I realized that if I lost Hope I would never get better. That being said I started reviewing my symptoms, doctors, medications, supplements, and keeping copious notes on all my symptoms no matter how small, and I kept praying, but now I prayed for Hope. Thankfully 10 months ago I found a otolaryngologist that started me on Nortriptyline and Verapamil and I slowly started seeing my life returning to a new normal. My internist is now slowly weaning me off the Nortriptyline and has added in a supplement called Neuo Comfort. I am doing good weaning off the Nortriptyline but it isn’t easy and is taking several weeks. I’ve continued to pray for Hope and now I also thank God for the relief I’ve experienced and for loving me even in my doubts. I will pray for you Mike and my thoughts are with you.