Christine vs. Migraines - SEP Journal

I decided to just consolidate all of my threads into this one. So that my whole story will already be in one place.

Here's Day 1:
Hi, I'm Christine, and chronic migraines have ruined my life.

Six years ago, I started having strange neurologic symptoms - brain fog, clumsiness, fatigue, blurry vision - but we couldn't find a cause. A year later, I started having headaches with the other symptoms, and I was diagnosed with migraines. Over the last five years, they have gradually increased to the point where I do not have symptom-free days. EVER. Working became increasingly difficult, and a few months ago I finally had to stop trying. I have applied for disability and am waiting to hear back.

Aside from being unable to work, I had to quit the orchestras in which I had played for several years. I can't exercise. I miss gatherings and outings with family on a frequent basis. I gave up on having friends because I was just too flakey to get together and do anything ever.

In pursuit of a cause, I've undergone a plethora of tests. MRIs, CTs, angiograms, EEGs, spinal taps. Everything looks ok. In pursuit of a cure, I have tried EVERYTHING. Pills of all sorts. Daith piercings. Chiropractic. Neck specialist chiropractic. Gluten-free. Keto. Therapy. Nerve blocks. Botox. Lidocaine infusions. Hospitalization for DHE infusions. Reiki healing. Cannabis. Ketamine. The ONLY thing that ever worked was Ajovy. It basically cured me for six months.!.. then it quit working. Nothing else has helped since. I'm to the point that we're trying things that didn't work again because there's nothing new to try any more. I am out of options.

So, the assignment was to discuss how I feel about whether my symptoms are TMS, and whether the program can help me.

Sigh.

That's hard for me, especially since my career is (was) in medicine. I've been working as a PA for a decade now. I'm good at what I do. I know a lot of stuff. I wasn't trained to think about pain syndromes in this way. The other reason it's hard is because pain isn't the primary symptom here. The disabling symptoms are the brain fog, fatigue, tinnitus, slurred speech, light/sound sensitivity, etc. The headache itself is mild most of the time. It's the "migraine brain" that's destroying me.

I watched the video where the lady with neck pain says it got better with her telling herself there's nothing wrong and nothing to be afraid of. I tried it on my migraine symptoms and... they haven't budged. My head is still ringing, my vision still blurry, my body all "ugh."

Can this program help symptoms like mine? I really hope so. But having tried and failed so much, I'm really struggling to have faith.

PAChristine, Wednesday at 2:09 PM

 

Reply from yb44:

Hi Christine

The one thing that jumped out at me was the title of your thread. Six years is a long time. For me it was more like 35 years, but who’s counting? Was my life ruined? It did have a massive impact on my ability to work and on my relationships, especially with my children. I was a stay at home mother for 16 years, not because I wanted to be, but because I feared going back to work and being unable to do my job. I wouldn’t say my life had been ruined. Greatly affected, yes, but not ruined.

Migraines were harder to shift than any other symptom. They were entirely caused by repressed rage, real violent, murderous rage. This had been building since childhood, as long back as I can remember. Of course, I couldn’t go around murdering people, so that rage was turned inward. Like you and countless others, I tried many ways to rid myself of migraine like drugs, cranial osteopathy, acupuncture, Reiki etc. Nope, none of those had any effect. I had to give up trying because that effort of trying and failing was causing even more rage. I would treat the symptoms of migraine with my prescribed medication. One day I had an internal dialogue with my brain, essentially telling it that I was through and wasn’t going to keep taking this drug. The migraine that had been escalating suddenly dissipated and I haven’t suffered another one since. Chronic migraine is defined as 3-4 times a month. At my worst I was experiencing this symptom 3-4 times a week.

Don’t expect by reading a book you will be cured. Stop the seeking of new ways to cure yourself - or going back to ways that never worked previously. Resume daily activities gradually, like make an arrangement to see family or friends, even if it’s one person at a time. Just get out there and stay out there. You won’t find a cure from anything external to yourself.

Do I have regrets? Plenty. I am still working up the courage to have a heartfelt talk with my elder daughter to explain why I was such a shrew to her growing up and to apologise. I also regret not achieving a career for myself. I’ve had a succession of jobs but feel I could have achieved more. When my inner bully starts having a go at me, I tell it I did the best I could and am still doing the best I can. That’s all I can do.

 

Hi yb44 - thanks for your reply. I really do need to hear that people with migraines have found success with these methods. I did achieve a career I love, bought a house I love, had hobbies I love, had an exercise routine which was going great, had friends I spent time with... and I've had to give almost all of that up. My life went from wonderful and joyful to persistently miserable. As I said - my symptoms are every day. I don't have good days any more. Rescue medications don't work. I feel so hopeless and trapped.

I definitely have suspected an emotional component for a couple of years though. I used to REALLY struggle with my mental health (true bipolar, hospitalizations, etc), but that got a whole lot better... in the same year that the weird neuro symptoms started. I recognize that I seem to have traded one problem for another.

I'm having trouble identifying the underlying emotional causes. Most likely: I don't currently believe in any external concept of God, but I definitely got pretty angry with him before deciding he must not exist. The migraines didn't get any better when I chose to let go of that belief system a year ago though. Maybe I'm angry at my former religion still. I was very faithful when the migraines started, but couldn't understand why other bad things were happening in my life.

I'm going to be making a new thread with my day 2 assignment: three things that make me mad, and three things that make me sad.

 

Reply from Ellen:

Christine,

You can read my Success Story on my profile or in the Success Stories sub-forum. I rid myself of migraines and fibromyalgia using only TMS treatment.

I had migraines since age 4 and they became chronic in my 50's, with about 15 episodes per month. I took more triptans than recommended, and I do think that added to the frequency of migraines, as it can cause a rebound effect. I think it took me about 18 months to rid myself of them entirely when I started doing TMS treatment. They went away gradually. I started having fewer and fewer until eventually I only had the ones that corresponded to changes in the barometric pressure (one of my triggers). I did a lot of research on whether or not migraines can be caused by barometric changes, and determined that they cannot. Therefore, it was a conditioned response (I had associated the two things). I had to unlearn this association and did so by telling myself repeatedly that barometric changes cannot cause a migraine, etc. The other important strategy that helped me was to do the following when I had the very first signs that a migraine was coming on (tingling in my scalp, some sinus pressure). I then told myself "Stop it, brain. There is no reason for you to have a headache now. You don't need a migraine. I am willing to look at all of my emotions.", or something to that effect. Then I just went about my day, and the next time I thought about it, I realized it never developed into a full migraine. I haven't had one in years now, and don't even get those early signs anymore.

I used Schubiner's Unlearn Your Pain book that has a 28 day program. I think it focuses more on emotions and early childhood experiences than Alan's program. It was not easy to complete, but it did the trick. I used the SEP and Alan's program for help with relapses that I've had for fibromyalgia and other symptoms, but haven't had a relapse for migraines.

It is possible to rid yourself of migraines by treating them as TMS. It is not easy. I did it alone, but you may find working with a therapist helpful. Hang in there. You can do this.

 

DAY 2: ANGER AND SADNESS

The assignment today is to list three things that make me angry, and three things that make me sad.

... just three? Lol, I can think of like a dozen, easy.

I guess I'll stick to the top few each. I'll also elaborate on each a little.

ANGER:
1. Broken Promises. I feel like I have been lied to and let down innumerable times in my life. I was bullied terribly as a kid, had an emotionally stressful home environment, was in a high-demand religion (Mormonism), and started having profound depression by the age of 10. Meanwhile, I was trying SO HARD to fix my life - I thought that maybe if I got straight As, dressed like the popular girl, was talented, and basically just did everything right that things would get better. They didn't. Later, "god" had promised me marriage, kids, health, educational success, job stability, financial security, and more. Again, I did EVERYTHING right to earn those blessings... and was let down. I never got married, I don't have kids (which is fine), I continued to have a lot of mental and physical ailments, I struggled severely to get through college and grad school, my employment experience has been very unlucky, I've gone through bankruptcy, etc. God did not provide after I believed, prayed, read my scriptures, paid tithing, went to church, attended activities, and basically poured my heart and soul into it. He never saved the day when I needed him. Right now I don't believe in any external concept of God (how could I??), but I am still angry at the struggle and perpetual disappointment, if not at "god" himself.

2. People doubting me. Few things "trigger" my anger like someone dismissively telling me that I'm unqualified or don't know what I'm talking about, especially with respect to my career as a PA. I worked hard to get through school. I got the highest possible score on the certification exam. I have been doing this for 10 years. I know my shit. I don't know why I feel so upset when people mock me in that way, but it's one of the few times I'm tempted to engage in physical violence.

3. MY F*ING MIGRAINES.
As I stated in my previous post, these damn migraines have taken SO MUCH from me. My career, my hobbies, my friendships, MY JOY. I have undergone a bazillion tests. Tried innumerable standard and alternative treatments, and had no (lasting) success. (For six AMAZING months in 2019, Ajovy basically cured me. It was sooooooo wonderful to have my life back! ... and then it stopped working.) I'm incredibly angry to be so incapacitated by the migraines where there is so much more I want to do with my life. Sometimes I want to scream and beat the hell out of something, but I never do.

And onto SADNESS:
1. The fact that people I love see me as being "less-than." Because many in my family are still faithful Mormons, they really value marriage and raising a billion kids. To them, that is the purpose of adulthood, so me being a single cat lady with a career makes me like a perpetual teenager in their minds. How could I *really* understand life and the universe without a litter of kids?? To them, I'll never have "that level" of maturity. I know that just because my path is different, I am not inferior... but it makes me really sad to be perceived as selfish and immature when I'm 37 years old and have been through a lot.

2. Me not living up to my ideal. I have struggled with weight and body image issues since I was a teenager. When I was younger, I dealt with a couple significant spells of eating disorders - losing 100+ pounds in a few months. Bones sticking out everywhere. Vomiting up dinner when social pressures required me to eat. It was so unpleasant. Now, I struggle to keep my weight in check... even after gastric sleeve surgery just 2 years ago. I initially lost a lot of weight, but regained 40 pounds when the migraines ramped up again. Incredibly disappointing.

3. Recent losses. In the last year, I've lost my dad and my cat. My dad was only 62 when he died of lung and stomach cancers last fall. Our relationship had ups and downs for a variety of reasons, but I regret not being much closer with him for much longer. Now he's gone, and I don't know how to comfort my stepmom, his grieving widow. I don't even know how I feel about this much of the time. Am I ok? Am I just suppressing it? I'm honestly not sure. As per the cat: For almost 20 years, my sweetest cat, Spike, was always by my side. He was so clingy and so affectionate. We moved together thirteen times. I adored him. He worshipped me. Unfortunately, he passed in April, and although I've adopted other cats, they aren't like him, and I still miss him dearly. On some levels, he was my true love. My soulmate. Not just an animal, not just a pet. He really was my heart and soul... and I'm lonely without him.


Welp, this was a pile of negativity... but that was the assignment. There you go - things that make me angry, things that make me sad. It's a lot. I see that. I know that. But that's the human experience, right? We all have stories and quirks. These are some of mine.

PAChristine, Thursday at 3:53 PM

 

Reply from Hedger:

Wow, you got to start getting this shit out. Your anger is very obvious in your writing. Still, you need to pump the level up way further in your personal journaling that no one sees. You seemed to have gone through soooo much, I would have been a fucking raging wreck!!

I mean, I have a bad week at work, just pissed off at how people are self-centered etc. and I end up screaming into a pillow and punching the shit out of a pillow while fantasizing. And then cry...

It sounds like you have done so much based on what is expected from you, and had a lot of bad luck. But what do YOU want in your heart? Do you stand up to people when they doubt you? (and I don't mean physical violence... however tempting)

My guess is your rage is the most important thing here. Release it (not on others..)

 

Day 3: Exercise and Some Thoughts

It took me a few days to get through the recommended reading and links for day 3. I had to go back and catch up on things I had previously missed, so there was a lot. It's also a bit hard to face, to be honest. But I'm finding that as soon as I think about accessing the program, my migraine symptoms start to ramp up. My head starts ringing. I start feeling nauseated. The pain starts. I think that's pretty telling.

Obviously I'm only early in the program, so I'm not great at countering this yet. Gosh, even as I typed that sentence, my pain picked up! But I think now I'm beginning to really see it for what it is. Just saying "I see what you're doing" to myself sometimes knocks things back down a few notches.

I still have A LOT of fear to work through. After all, I've left my job because the migraines were so persistent and so disabling. My biggest worry by far is that the stress of my career in medicine will be too much for me to handle, and the migraines will return. But perhaps I'm thinking too far ahead.

I feel a little encouraged though. Maybe I'm on the right track. Perhaps I WILL be a success story. But I sure have a ton of work to do.

Anyway, the assignment today was to talk about exercise. Since being bullied during recess and gym class as a kid, I have always joked that I'm "athletically impaired." Far too self-conscious to participate in any sports or even to go to a gym. I have a great elliptical at my house that I love using, but I stopped with it about a year ago when the migraines started getting particularly ugly. I would get sudden headaches with exercise that lasted for hours or days after. Eventually, it wasn't worth it.

However, I really enjoy gardening, and this is my primary physical activity right now. This morning, I went out and cut the dead stalks off of my hollyhocks. Tomorrow I plan to pull tons of weeds and prune the plants that have already died back for the season. I need to rake the mulch back into the planting beds - my cats kick it all over the place (eyeroll). I also have a veggie garden that is producing tomatos, peppers, and tomatillos like crazy, so that keeps me busy with cooking and preserving, too.

As it gets colder, I'll need to try the elliptical again. Perhaps this program will help me get there.

 

Thank you for sharing your journey, PAChristine.

 

Day 4 Prompt: What was the most disheartening thing a doctor has told you about your symptoms? In what ways have you kept that in your mind?

Maybe a year ago, my migraine specialist neurologist told me with utter exasperation that I need to stop looking for a cause, because they are "just migraines!" Before (and even after) that encounter, I was absolutely certain that there was something physically wrong causing my debilitating symptoms, and to say otherwise meant that there really was nothing we could do to stop them. Accepting that meant accepting defeat, because I've already failed every migraine treatment known to man. I guess it stuck in my mind because that had been the greatest fear all along: that I couldn't be helped.

I realized that another thing that makes me really upset is when I feel that people are not taking me seriously. As a 20-something, I was having tremendous difficulty with bipolar depression, and wasn't responding super well to typical medications. I was very frustrated and hopeless. During my 2nd hospitalization, the psychiatrist told me that I had been misdiagnosed: he felt I actually had borderline personality disorder (which has an extremely bad reputation among clinicians, and is much more difficult to help). I was FURIOUS because I saw this as them rejecting me and saying that they couldn't help me. That they didn't want to keep trying. I felt so invalidated and so desperate for SOMEONE to believe me. Later, we figured out a medication regimen and genetics testing all but proved that I actually really do have bipolar disorder... but the emotional trauma of that perceived rejection still makes me queasy.

My optimism in this program waxes and wanes. Sometimes I feel hopeful that maybe, FINALLY, I can get better. But sometimes when I'm happily distracted and not in any emotional distress at all, the pain zings me out of nowhere, stopping me in my tracks. Is it possible to have chronic migraines that aren't TMS? I really fear that this effort won't help. But I'm going to keep trying, because... at this point I don't have much to lose.

 

So... I'm having a hard time yesterday and today. Lots of pain and a strong aversion to doing the work of the program. Most of me is able to recognize the pain for what it is, but I suppose I'm afraid that the emotional pain I need to face will be even worse than the physical pain my brain has created. And there's still a part of me that feels powerless and hopeless against the pain. So, rough day. I'm going to look at the day 5 reading now. Maybe.

 

Day 6. THE FLOOD GATES OPENED.

I did it. I connected with my bullied childhood self and felt everything she was feeling again in full, vivid agony. I BECAME her again as I journaled. And then I wept in RAGE and pain and frustration as the emotions boiled inside of me, still screaming for release. I felt them SO MUCH. It seemed like a long time. But gradually, like a fire, they died down to a hot, glowing bit of charcoal still lodged in my heart. It's sitting there, heavy and aching, and with the potential to ignite a new blaze. Oh, my heart hurts so much.

The forum posting assignment today was about meditation - how our attempts went. For me? Not well. My pain and tinnitus are still pretty intense and very distracting, especially in quieter moments. They made me angry when I was trying to feel peace and calm. I can't just tell my brain/body to knock it off because I know what it's doing. That tactic just isn't working for me - my symptoms persist. I continue to have fear about whether all of this agonizing emotional work will bring me eventual relief. I sincerely hope so.

Today was rough and I'm really hurting emotionally. I suppose that's the point and I need to allow it. It's still hard though.

 

I woke up fuming this morning. I know what (who) caused my migraines to start, and I'm PISSED.

I started a kinda crappy job 3 hours from home in 2015, and the physician who hired me there brought the final straws. He's the one who told me that my feelings are irrelevant, my opinions are invalid, and any expression of negative emotions is not ok. And he enforced this with me repeatedly until I got it right. Until I internalized it. That same year, my migraines started. The following year, I changed to a new job at a prison where a misogynistic ass of an administrator further rejected my lived experiences, and things really took a turn for the worse. I have suffered uncurable chronic migraines ever since, and now I'm LIVID. I want to tell them the damage they wrought in my life, but I know they would just turn it back on me. My problem. My fault. That's how it always was.

But here's what I want to say:

To Dr. X and That Administrator:
You screwed up. Your misogynistic expectations screwed ME up. I came to you hurting and vulnerable. I appealed to you for help, and instead you reviled at my "negativity." You told me you didn't want to hear my feelings or even ever know that I'm not having a wonderful day. You instructed me to hide it at all costs - telling me that these feelings were not acceptable. Not valid. That they should not even be entertained in public or in private. That I just needed to be more cheerful and positive, regardless of anything and everything.

I did what you asked. I did EXACTLY what you asked. I stuffed my emotions and tried to suffocate them with a blanket, a pillow, food, anything. I put on a smile and pretended they were never there. I told myself that negativity was not allowed - just as you said. I BELIEVED it.

But pretending didn't fix ANYTHING. Smothering my emotions didn't work. Instead, my body channeled them into a new outlet - migraines - which could not and would not be silenced. The migraines my screaming brain created robbed me of my friendships, my music, my hobbies, and now my CAREER. They robbed me of the things that brought me joy.

And I blame you. I do. I don't give a fuck if you think it's my fault for having these feelings in the first place. My role as a woman is not to please you at every second of every day. I don't owe you or anyone a stream of constant positivity. I trusted you and you broke me. You destroyed what was left of me, and now I'm struggling to break free.

How DARE you couch your abusive repression as an effort to "help" me. Don't you EVER tell another woman that she is too much. That her feelings are too much. That her emotions are unacceptable. That her experience is invalid. That her feelings are not OK.

DON'T YOU DARE. DON'T YOU DARE RUIN ANOTHER LIFE LIKE YOU RUINED MINE.

If you can't handle a woman with feelings, then you're the one who needs to stuff it and suffocate it. YOU are the one with the problem, not me. Not her. If you think she needs help, HELP HER GET HELP. If you don't want to discuss it with her, tell her you'd rather not talk about this... but don't tell her that she shouldn't have those feelings in the first place. Whether or not you like it, HER FEELINGS *ARE* VALID.

FUCK YOU and your self-righteousness. FUCK YOU and your abusive mind control tactics. FUCK YOU for destroying me to make yourself more comfortable.

Sincerely fuck off,
Christine.

 

Right on, Christine!! (Cheerleader emoji required here).

I imagine there are so many people who never make this kind of connection with their symptoms.

 

Day 8

Well, I dropped off of the face of the planet for a minute there. Things were just getting too intense emotionally, and I needed a break. My symptoms also flared BIG TIME, and the thought of looking at a computer screen sounded like torture. A couple of days ago, I learned that it will be another 4-7 months before I hear back on my disability application, and that is a huge blow because I don't know how I'm going to survive financially for that long since I'm still not well enough to return to work. Add that to the killer migraine I was already experiencing, and it made for a pretty dark week. Like, really miserable. It's a darned good thing I dislike the taste of alcohol so much, because there were nights (and days) I think I could have drunk myself into oblivion. I sure wanted to. *sigh*

Anyway, here's the prompt from the SEP for day 8: Are you having success at recognizing the emotions connected to your pain? If you have, how do these emotions make you feel? If not, what do you think is preventing you from doing this?

Truth be told, I haven't noticed ANY correlation. A week ago, I was very happily distracted when I got slammed by a sudden wave of nausea and migraine brain fog in the aisle of a favorite store. A couple of hours later and the pain came. My migraines seem to come at total random, and can interrupt activities I really enjoy while I am fully engaged (for instance, during an orchestra rehearsal when I'm totally focused on the music). They also start when I'm not doing much at all. It really doesn't seem to be releated to me feeling something or thinking about something. I know exercise triggers them frequently for me. I watch Star Trek TNG and zone out, so again, I don't see an emotional cause there. After the pain starts, THEN I generally feel frustrated - even angry - that it limits me so much, but this is purely in reaction to the migraine, and not something I was feeling before. How am I even supposed to answer the "what is preventing me" question?

I listened to "The Way Out" last week. Good book. But... I'm struggling with this. I feel like I'm hitting dead ends. I feel like my symptoms don't fit the typical TMS profile. I don't know how I'm supposed to do somatic tracking when my symptoms are often just nausea, ringing ears, blurry vision, and severe brain fog. The actual pain itself is always the same: mild-moderate, right side of my forehead, sharp/burning, constant, nagging. The only time I don't have symptoms is when I'm asleep.

I'm really feeling discouraged.

 

Aside: Facebook being down is killing me today.