Happy Painiversary, My Brain Hates Me!

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Happy 3rd Painiversary, My Brain Hates Me!

In 2012, something started going wrong with my head. On August 7th, 2012, after my first productive and full day of work in a long while, I went home, sat down in my kitchen, and my head started hurting again. It never stopped. That day was both the last day I remember feeling good, and the beginning of my Monster Migraine.

It’s been a long, depressing, painful, maddening three years. There’s nothing happy about living with chronic pain. There’s nothing fun about being buried under tons of medical debt. There is no reason to celebrate today.

However, I’m alive. I’m alive and you’re reading this. Maybe your body has betrayed you in some way. Maybe someone you know lives with pain. Maybe someone you know thinks a little differently. Maybe you think a little differently. You’re alive too. We’re getting through the day.

This isn’t a joyous day for me, but it’s also not the end of the world. I live in the 8-10 pain range. all of the damned time. Yesterday, I had Botox treatment and a lot of new things were discussed at my appointment. I sleep sporadically. I’m grumpy frequently. I’m pretty darn depressed. I do have a family that loves me, though, and a ridiculous dog, and a roof over my head. Things could always be worse.

Therefore, on this day of sarcastic remembrance, I shall embrace the fact that I have grown as a person because of my pain and that I have accomplished some good things because of my pain, and that not everything is horrible.

Thank you for reading over the past few years, and for continuing to read in the years to come. You’re rad, and don’t let anyone tell you otherwise.

Love Your Friendly Neighborhood Pain Grump,

My Brain Hates Me

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The “Suicide Disease” – And Why I Hope I Have It

Last night I read this article about a woman named Amanda Young who lives with horrible, unthinkable, daily pain, and I got excited. Amanda Young has Trigeminal Neuralgia (TN) and her symptoms sound very similar to my symptoms.

According to the National Institute of Neurological Disorders and Stroke, Trigeminal Neuralgia is a rare condition that typically affects adults over 50, and in younger adults, is usually only associated with MS. It’s commonly misdiagnosed as other conditions and doesn’t show up under MRIs without certain protocols.

What is Trigeminal Neuralgia?

The trigeminal nerve is the fifth cranial nerve and it helps you do things like chew. If you follow my blog, you might recognize this nerve from my previous posts about the Cefaly migraine treatment device. It’s located in front of the ear, and branches out into three sections. One section reaches towards your eye. The other reaches towards your nose, and the last reaches into your mouth and jaw. You have two trigeminal nerves, one on each side of your face.

When this nerve becomes compressed in any way, or the myelin sheath around the nerve degenerates, it can cause a person to experience intermittent bouts of shocking, searing pain that lasts from a few seconds to a few hours. These episodes can happen hundreds of times a day. It is less common, but still very painful, that the individual will experience constant pain at lower levels. These two types of pain can occur independently or together. And that, my friends, is Trigiminal Neuralgia.

TN is also called tic douloureux,  and was unlovingly coined the “Suicide Disease” in the early 1900s by Dr. Harvey Cushing… don’t confuse this with Cushing’s disease. Same doctor, different condition.

TN is so painful that it makes you want to die.

Is Trigeminal Neuralgia Treatable?

This is where I stop discussing facts and start doling out some hope. There are treatments for TN. The problem with TN is that it’s super duper painful and that it looks like so many other conditions. Doctors aren’t looking for it, especially not in younger people. If you don’t know about TN, and your doctor isn’t ruling it out, then you won’t receive proper treatment.

However, if you know about TN and you ask your doctor about TN… and TN is not ruled out as the cause of your pain, the door to new treatments just opened up.

TN has treatment options that range from medications to surgery. Some of the medications are very similar, if not the same, as medications used to treat chronic migraine and cluster headaches.

See? I told you I would say some hopeful things! It’s not curable, but it is treatable.

Why I Hope I Have Trigeminal Neuralgia

It’s really complicated. For the past three years of my life I’ve lived in constant pain, been subjected to hundreds of treatments, thousands of needles, and countless hours of medical and psychological appointments. I’ve taken medications that tear up my body, mess with my mind, and don’t really work. I’ve spent many days over the past two years wishing I didn’t exist. My life has been ruined by what I refer to as my Monster Migraine.

In all of that time I have never had a name for my condition. I’ve never had a cause for my condition. I’ve had multiple diagnoses that surround headache/migraine conditions that don’t fully fit the array of symptoms I have. I have met people who are like me, living with this constant brain war, but I don’t have a community of people who understand my specific issue. I lump myself in with the spoonies of the world, the chronic pain sufferers of the world… but I still haven’t found that system of support and validation that people living with pain really need.

Having a name for my condition means access to treatments, foundations, and people who understand what I’m living with.

How I’ll Talk to My Doctor

It gets tricky when you’re dealing with conditions that are often misdiagnosed as other things. Doctors don’t like being wrong, or not knowing things, or being shown up by their patients. Yes, I have a negative view of the healthcare system as a whole. But in all of that negativity, I have one thing going for me… I have a doctor who cares more about helping me than about being right.

My doctor is awesome. She’s humble. She’s brilliant. She looks cute in boots. Most importantly, she knows when to say, “I don’t know.” In my vast experience, this is a rare trait in a doctor. I have found a gem.

On Thursday, I see my neurologist for another series of Botox injections. I will tell her about TN just as I have told you. I will probably cry. I will try to remain as detached from the conversation as possible, and I will ask the following question:

“Will you rule out Trigeminal Neuralgia as a cause for my pain?”

I will not ask her to diagnose me with this condition. I will not say, “I’ve read all of the facts and this fits better than anything else has and I want you to agree with me that this is what is wrong with me.”

I am not a doctor, and I choose not to self-diagnose. I believe in finding doctors who listen and make every effort to rule out conditions that I have questions about.

The way to determine if I have Trigeminal Neuralgia is to ask my doctor to prove that I don’t have Trigeminal Neuralgia. And if I don’t have it, that should’t be a hard task.

Friday marks the third anniversary of the last time I knew what it felt like to not be in pain. On the afternoon of August 7th, 2012, after a day of feeling much better, and actually feeling good… the pain that I had been battling all that summer started again and never went away.

It’s been a long three years.

A diagnosis would be a hell of a  way to celebrate my painiversary.

However, as much as I’d like to have an answer, the only answer I’ll accept is the correct one.

Thank you, Amanda Young, for talking about your pain.

Please visit Amanda’s fundraising effort, Face the Change, to learn more about TN and about how you can help. 

Lost All Hope: Information on suicide methods, statistics and help

Lost All Hope is absolutely the best website about suicide I have come across. It’s factual. I like facts. Facts are comforting. Numbers are real. I don’t like being pandered to or actively listened to. I want someone to give me concrete information.

From the carefully ordered menu that guides you through help and mindfulness, to the cited references that offer further interesting resources… this site is lovingly crafted. A must read for those of us struggling with a lack of desire to wake up in the morning.

 

“Lost All Hope has no angle. The site is non-profit. It has no religious affiliation. It has no political stand point on the whys and wherefores, pros and cons, of suicide or euthanasia. It offers no advice, and has no bulletin boards, chat or forums (although does link to some). It is here as an impartial resource, to help inform you, and make whatever choice is right for you. I hope you find it of use.”

via Lost All Hope: Information on suicide methods, statistics and help.

6 Myths About Hope

Hope. Am I right? It can get annoying, all of that hopefulness. It’s probably something that people talk to you about frequently if you suffer from depression or chronic pain. I know that hope is a frequent conversation topic in my household. There are some things you may believe about hope that make you tense at the very sound of the word. However, hope is more attainable and useful than you think. Here are some common myths about hope that might keep you from experimenting with this powerful feeling:

1. Hope can be absent from your life.

You wouldn’t be reading this if you didn’t have even just a little hope. Hopeful people look for ways to find hope, even when they think they are broken and all hope is gone. Truly hopeless people give up, and you’re not going to give up. Hope is in the little things in life. It doesn’t have to be a huge feeling that makes you walk around like Mary Poppins. Hope is always inside you, you just have to listen.

2. Hope is only about the future.

Hoping for things to be better may feel like a waiting game and pointless, but what you’re really doing when you’re allowing yourself to hope is accepting the present. You’re looking at how things are and permitting yourself to change how you see the world. Your situation might be bad, but hope let’s you see the pieces that will get you to that brighter future. Try imagining what you want that future to look like, and you can then develop a plan to make that future happen with the tools you have right now.

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3. Hope doesn’t accomplish anything.

What good is hope? Does hope change your sadness? Does hope pay your bills? Does hope keep you warm at night? Maybe not. But what hope does do is give you the drive to get things done. Hopelessness causes stagnation and festering. A little dash of hope can kick start your journey towards self-improvement. Hope has helped me continue trying different medical treatments, and sure, I’m a bit defeated when they don’t work… but I hope that the next one will. Hope keeps you moving forward. Hope is literally the fuel of motivation.

4. Hope is a waste of time.

It often feels more natural to doubt and be skeptical about our world, especially if life isn’t being handed to us on a literal or figurative silver platter. But think about a time when you were hopeful. You might have felt confident, positive, even better about yourself. During that time your psychological state was probably improving your physical state as well. It doesn’t take time to change how you view the world, it merely takes a personal choice to do so. I’d rather look back on my life and see all of the things I hope I felt rather than a lift full of doubt and waiting for the next tragedy.

5. Hope has no medical benefit.

This one should be obvious. Patients who want to recover and have hope, recover faster. Patients who are negative and feel hopeless typically suffer longer, or worse. Mind really does have power over matter… the matter of your body. Stress and worry take a toll on the body. Hope is a necessity for anyone trying to care for themselves emotionally or physically. Even if you’re chronically ill, there are things for which you can hope. It might be something as small as a better day or that a friend will visit you. Keeping hope alive in your heart and mind will keep you alive and healthy, or so they say.

6. Hope is hard to feel.

Think about something or someone you care about. Do you want the best for that thing or that person? Think about a time when you’ve wished you felt better. Did you imagine what feeling better actually felt like? Think about the future you want for yourself, the good one, with all of the awesome stuff that might seem unattainable, but anything is possible in your imagination. Could you visualize it? All of those feelings stem from hope. You just felt it. Just now. Just like that. It totally happened.

Hope is within you now, and always. It may not be on the surface, and it won’t always be, but it is there. Here are some great articles about finding your hope:

What No One Tells You About Trauma « TWLOHA

“It is not something you can just move past, but you try anyway. You try to get over and under and around and through. It seems to block your way forward at every turn. But you keep trying because there’s no such thing as going back.

It is not something that has a reset button. There is no do over. And, worst of all, there’s no off switch. It just settles in your chest and threatens to rise in your throat with every breath.” – Claire Biggs

via What No One Tells You About Trauma « TWLOHA.

I Believe It Will Stop… Or, Have Hope, Ye Hopeless

I’ve been in pain for over two years now.

It really stinks.

I’d use less friendly language than that, but I had a ridiculous evening with my husband, and I can’t be bothered to be surly after a ridiculous evening.

With the change in weather from cold, to warmish, back to cold again, the fun my-entire-body-hurts-oh-God-please-remove-all-of-my-limbs pain has returned full force. Like childbirth, I had forgotten this part of the pain story. When I was bedridden in the Winter/Spring ’13-’14… it hurt like this. I remember now. I remember clinging to ice packs because they were temporary something, but also cursing them because they were cold something else.

I remember feeling like I was going to die. I remember wishing I was dead, or would die. I remember the day my doctor told me I needed an MRI, and soon… and believing that I was going to die for an entire week. I remember how warm and welcoming that feeling was, and how terrifying.

I remember the hopelessness and the sleeplessness. I’d go days without sleep during those months. I simply hurt too much, or the medication made me too jumpy. I was constantly melting down and my body couldn’t relax from the fight or flight adrenaline onslaught.

It was a bad time.

And here I am, once again… in the same pain range, but now the body aches are back.

So what is different?

Well, I’m on an anti-depressant (Lexapro,) which has an anti-anxiety bonus. I take clonazepam to help me sleep, which is also an anti-anxiety medication. I see my therapist once a week and have productive sessions in which I talk about my pain, my guilt, the issues all of these things bring to my family. I have emotional coping skills I didn’t have last Winter… born simply of necessity, determination, and hope.

There. I said it. I have hope.

Hope seems like such a dirty little word when you have a chronic condition, especially a painful one. Hope seems almost cruel. But I have it. It’s inside me. It lingers and tugs at me on those days when I can’t get out of bed, which, honestly, is every day right now. I’m in bed all of the time now. When I’m not in bed, I’m drugged to the gills.

I’m really good at faking human.

I think the whole hope thing helps with that too. Oh, well, that and makeup. Makeup really helps. Concealer is your friend, dears.

I believe that my head will stop hurting when the rest of me has landed upon what it is meant to do. Or perhaps this is what I am meant to do. Maybe I’m meant to feel this pain so I may share it with you… so that if you are hurting, you get the help you or your loved ones need.

I don’t know. But, damn it. I think that one day I will be permanently pain free. But if I’m not, that’s okay, because I’m alive and even though this is a horrible way to live, at least I have good people living beside me.

If you don’t have hope, I’ll let you borrow some of mine. It’s tattered and tear-stained, but it’s good.

Hope is good. I recommend it.