Trigeminal Neuralgia – Officially an Underlying Diagnosis for MBHM

It has taken me a while to gather my thoughts enough to sit down and write this. I feel I should dive in and just say it, and then ramble about after. I also feel that just saying it here makes it final and real, and perhaps that is why I have been putting it off.

On November 3rd, my neurologist declared that given my pain history and my response to Oxcarbazepine, that Atypical Trigeminal Neuralgia (TN2) is an underlying cause for my Monster Migraine. The TN2 continually triggers migraine symptoms, and everything keeps cycling, and this is why nothing has been successful.

This diagnosis means a few things. First, it means that I have a reason for my pain. Second, it means that I have a community of sufferers to join and learn from. Third, it means that I have a disease that currently has no cure. Fourth, it means that there are new treatment options open to me that, if successful, may lead to a better quality of life than I am currently living.

And, lastly, it means that I have gone from hoping that my pain will one day end to realizing that my pain is something I will have to manage for the rest of my life.

That last thing has been difficult to process. I have cried. I have been angry. I have acted rashly, or hyper-rationally… or something. I have turned to treatment options I have previously refused because I saw them as too painful or too pointless. I began acupuncture this past Friday and am going to see my acupuncturist twice a week until I see some results. I am going to turn to outside-the-box pain medications.

I have launched my own, personal war on Trigeminal Neuralgia.

I have curled into a ball and hidden under blankets.

I have talked to friends.

I have avoided friends.

I have felt relief.

I started a secret self care group on Facebook for when I have feelings and I need some kind of support. I started writing in a journal. I started falling apart. I started getting my shit together.

I definitely started forgiving myself for some things.

I have a disease, and that makes my head hurt all of the time and fires up ye aulde migraine making machine constantly. Fuels it. Makes it glow red hot.

Cool. So there is that.

The Handbook for People with Pain + MBHM SURPRISE!

We interrupt this brief My Brain Hates Me hiatus to bring you the following announcement! As a delegate for the Power of Pain Foundation, I’ve received 25 copies of The Handbook for People with Pain,  which is a great (and short) resource guide for anyone living with pain. I’ll be mailing copies to some of my Facebook followers along with a special surprise in the month of November! If you’re living with a painful condition, or know someone who is, please click here to like MBHM on Facebook to learn how you could get a MBHM surprise along with the book! The book is available to download at www.InTheFaceofPain.com!

Get a free copy at http://www.InTheFaceOfPain.com or get 1 of 25 copies personally mailed to you along with a personalized surprise from My Brain Hates Me by checking MBHM out on Facebook!

Self-Advocacy, Chronic Pain & Comorbid Chronic Depression

I’m not a doctor. I’m not a mental health professional. I’m one of 14.8 million (NIMH) people suffering from a major depressive disorder in the United States and one of 1.5 billion (American Academy of Pain Medicine) people suffering from chronic pain in the world.

As of this very moment, scientists don’t understand exactly why depression and chronic pain are linked, but the comorbidity of these conditions cannot be denied. Because these conditions are often both present in patients, one treatment strategy alone is often ineffective. To deny the mind and spirit when the body aches is like putting a band-aid on a broken arm and telling us to walk it off. However, many medical professionals are just learning that it is important to pay attention to the psychological effects of their patient’s conditions, and the reverse.

Photo: ALAMY

Therefore, I think it is important to have a conversation about what we, as patients, must do to advocate for ourselves. I discuss my doctors an therapists frequently and candidly because there is nothing shameful about being ill or mentally unhealthy. I also discuss them because removing the stigma will hopefully encourage others to seek much needed treatment even when it is not suggested by their general practitioners.

We tend to think of general practitioners as mechanics. They keep the body running and send us out to specialists to have our engines rebuilt when they themselves are not qualified to do so. What is lacking from general practitioners is a total-body approach to our healthcare. It is unfortunate that vision, dental, and mental health have been divided into separate fields. In fact, it is detrimental to those of us who suffer from chronic anything.

Think about the diagnostic process when something goes wrong with our bodies. General practitioners run through the check-lists of tests an procedures with which they are familiar and only then do they begin referring to specialists, eye doctors, and dental practitioners. Notice that I did not say mental healthcare providers in that sentence. They keep the body running, with little consideration for the mind. This is not to say that doctors don’t send their patients to psychiatrists and psychologists. However, when patients are sent, it is rare that the patient will then undergo in-depth counseling to determine root-cause issues. Typically, patients are sent with a list of symptoms they have discussed with their general practitioner, and the mental healthcare professional will prescribe something and manage psychoactive medication from that point.

This is extremely problematic. Although the chemical causes of depression may be treated, it is unlikely the patient will learn much needed coping skills to battle depression. Face it. We’re a society of instant-gratification loving people. We want pills to fix things. We want treatment to fix things. We don’t necessarily want to spend years in counseling learning how to be more functional emotional beings.

Which brings me to pain and depression. The road to diagnosis with chronic pain is a long, long, long, long road full of bumps and monsters and disaster. This process is harmful to the psyche. Between doctors who don’t know, doctors who don’t care, and doctors who mistreat chronic sufferers… patients develop an adverse reaction to the medical profession as a whole. We don’t trust that doctors know what they are doing. We feel like lab rats. And we feel jerked around. To feel pain and to not feel heard is dehumanizing.

Sure, it’s pretty obvious that hurting all the time would lead to depression. But it’s more than just feeling down about limitations. It’s a chemical process that begins to form a feedback loop in the body from which we cannot escape. When doctors don’t identify that this feedback loops is occurring, the only result is a worsening of symptoms.

As chronic pain and chronic depression persist untreated, they worsen. It’s inevitable. So what can we as patients and we as sufferers do for ourselves?

It’s simple… talk and take action.

Research symptoms. Prepare for your appointments. Consider mood as well as physical symptoms. Think of yourself as one whole being and force your doctor to see you as such. Ask questions about side-effects of medications. Talk about sadness, anxiety, crying, feeling alone or trapped with your doctors. Seek out mental healthcare and make sure that all of your healthcare providers are talking to one another. Treat your body and mind as two parts of one machine and get total-body care. Don’t wait for your doctor to tell you what to do. Do it and tell your doctor.

You are one body, mind, and spirit. These three things work in harmony to keep you going every day. I charge you with the care and maintenance of your total body. Demand that your doctor treat you the same way, and if they won’t, find a doctor who will. It is okay to seek proper treatment and it is okay to take your healthcare into your own hands. You are not at the mercy of the medical community. You are completely in charge of your treatment and you deserve the best they can offer.

But they don’t always offer, and you need to be aware of that.

Photo: ALAMY

Trigeminal Neuralgia & a Better Day

I woke at 5:30 this morning. As always, I stayed very still as consciousness slipped into my body. As always, I waited for the pain to wake up and spread through my head like a hot poker. The pain wakes up 1-2 minutes after I do. Some miracle of body chemistry keeps me from feeling anything for a moment or so. This moment is both my favourite and most hated time of day. For a moment I am pain free. For a moment I am terrified that the pain will start and be worse than it has been before. For a moment… I am frozen.

This morning, as I waited for the pain to burn through me, I thought about how my pain has aged me. I thought about the bags under my eyes. I thought about my skin and my hair that falls out in clumps. I thought about the weight all of the stress and medication have caused me to gain. Then the pain hit, starting from my left eye and radiating outward, across my forehead and scalp, down my neck, into my shoulders. It’s an evil feeling. It’s like being afraid of the bogeyman, arm hairs on end, knowing he’s real but also knowing no one can see him.

But this morning my bogeyman was less frightening.

It has been approximately 10 months since I experienced anything close to a decent pain-level day. It has been exactly one month since I began taking medication intended to rule out Trigeminal Neuralgia (TN). Today, my pain level is a 6. This past Thursday, I experienced a level 5 pain day.

I can’t express how amazing this is.

My neurologist was not able to rule out type 2 TN at our consultation last month. Her only solution was to put me on the medication most commonly used to treat TN, Oxcarbazepine (OXC) and  wait for improvement. OXC, also known as Trileptal, is an anti-seizure medication. My dosage started at 300 mg per day and was then increased to 600 mg per day two weeks later.

Granted, I received a Botox treatment the same day I began taking the medication. It is highly possible that the Botox is the reason for my random better pain level days. Two good days out of an 8-10 month period is not a trend. It is an anomaly.

A very welcome anomaly.

Having a better day, not a good day, but a better day makes me want to accomplish things. Unfortunately, the best way for me to keep my Monster Migraine tamed is to rest and avoid over-exerting myself. A better day merely means a more restful day.

A very welcome anomaly.

Suicide, Depression, T-Shirts, & Deadly Rashes with My Brain Hates Me

Power of Pain Foundation

Donate to http://powerofpain.org/ or become a delegate yourself by clicking here: http://powerofpain.org/delegates-of-popf/

Suicide & Depression Hotlines

United States Hotlines

Depression Hotline: 1-630-482-9696

Suicide Hotline: 1-800-784-8433 FREE

LifeLine: 1-800-273-8255 FREE

Trevor Project: 1-866-488-7386 FREE

Sexuality Support: 1-800-246-7743 FREE

Eating Disorders Hotline: 1-847-831-3438

Rape and Sexual Assault: 1-800-656-4673 FREE

Grief Support: 1-650-321-5272

Runaway: 1-800-843-5200 FREE, 1-800-843-5678 FREE, 1-800-621-4000 FREE

Exhale: After Abortion Hotline/Pro-Voice: 1-866-439-4253 FREE

National Alliance on Mental Illness www.nami.org

American Foundation for Suicide Prevention www.afsp.org

SAVE www.save.org

International Bipolar Foundation www.ibpf.org

No Stigmas www.nostigmas.org

Active Minds www.activeminds.org

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The Day of Reckoning for My Brain Hates Me- TN or Not TN?

Earlier this week, I discussed the “Suicide Disease” and why I hope I have it, and today I saw my beloved local neurologist and I was prepared to ask my questions.

Let me first say that I was there to receive a Botox treatment, something that I’ve had countless times, and something that has become old hat. It was something of a surprise when my doctor opened with, “some patients who have received Botox injections in their neck have died of pneumonia. I just wanted to let you know. No one with your condition has died, and we don’t know if it’s truly linked.”

When your medical appointments start off with needles in your face and your doctor telling you how other people have died from the thing that she is in the process of doing to you… you don’t have the warm fuzzies. But this is the sort of relationship my doctor and I have. There is no bullshit in the exam room.

Trigeminal Neuralgia – Check Yes or No

I let her know that I had two questions for her about some research I had done. Obviously, the huge question was, “can you rule out Trigeminal Neuralgia (TN)?”

The short answer is that my doctor can’t rule it out. The long answer is that if it is in fact an underlying cause for the pain I am in, I still have Status Migrainosus with refractory/intractable migraine and the TN doesn’t change that… merely gives us different treatment options. My MRIs have been clean, so I don’t have a trigeminal tumor. Therefore, the only course of action to determine if I have TN is to take the medication used primarily to treat TN, Oxcarbazepine.

Oxcarbazepine is an anti-seizure medication, like Topamax, and, like Topamax it is supposed to slow cognitive processing. It’s knon as a mood-stabilizer, however it has the standard suicidal-thought warnings as all anti-seizure medication. The really fun things about Oxcarbazepine are the dangerous side effects. It can cause bone marrow suppression and possibly a deadly rash! Exciting! Those side effects are rare. Medications are awful and to do good things for one part of your body they often have to destroy another part of your body. Topamax has been killing my kidneys for years. So far Oxcarbazepine makes me very, very dizzy (after two doses), but I’ve had no pain relief.

If the medication reduced my pain, then I have TN. If it doesn’t, well. I’ll stop taking it.

The Mother Fucker Gene

My second question had to do with the MTHFR gene, which I affectionately call the Mother Fucker gene. MTHFR, the methylenetetrahydrofolate reductase (MTHFR) gene, has been linked to a variety of medical disorders. A mutation in this gene causes vitamins not to be processed properly and then migraines can happen. I asked if I should be tested for the mutation and if there were any existing gene therapies worth exploring.

My doctor informed me that insurance typically doesn’t cover genetic testing of this nature, and that there aren’t existing therapies. I’ve done some reading, and there are specific supplements you can by that cater to the mutation, but there is little to no research speaking to there effectiveness. Most of the success stories are word-of-mouth. What did come out of this conversation with my doctor, and what I find most interesting and most terrifying, is the MTHFR’s link to PFO.

PFO, or patent foramen ovale, is a hole in the heart that didn’t close after birth. This defect in the heart is strongly linked to migraine, so much so that my doctor recommended an echocardiogram as soon as I brought up MTHFR. Her reasoning is that given my history and family history, it’s likely that I have the mutation, and that the echocardiogram is a painless stopgap. The worst case is that we discover the hole. If we do, she recommends the hole be closed because it might just help me feel better.

There are No Stupid Questions

I’m glad I asked my questions because there is now at least some momentum in my treatment. I can’t say whether it is forward momentum. My doctor also did a ton of blood work. I feel like this was the creative, out-of-the-box thinking she needed. I think she and I both admit that we’ve been stuck. We haven’t known what to do. There’s tons of new research, but what do you pick to try? And how do you broach the subject?

You ask questions.

How to Talk to Your Doctor About Online Medical Information

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It’s a well known fact that I hold a certain disdain for the medical field. It’s not that I think that doctors are bad people, I just think that the medical system as a whole is still achingly behind the times in terms of customer service and its embrace of technology. As a curious, neurotic, moderately intelligent gal, I have a tendency to desire in depth knowledge of my conditions, medications, and treatments. This also means that I don’t simply rely on my doctors to do the leg work. Although I hope that my doctors think about me and my weird brain thing outside of the examination room, the chances are slim.

So how do we break the ice, so to speak, when we want to bring up information we’ve discovered online? The internet is a wellspring of verifiable medical information from peer-reviewed studies to foundations for specific conditions that keep statistical data on treatment success rates. The internet is also full of a lot of crap, and our doctors know it. Therefore, we have to take it upon ourselves to approach our doctors with a certain amount of care.

Here is your official, My Brain Hates Me guide to talking to your doctor about information you find online:

  1. Use verifiable sources. It’s not really that hard and it’s a habit to build starting from this moment. Start with your condition and look for any foundations. Does the website have a .org .edu. or .net in the URL? Wikipedia and .coms are great as starting points, but only as starting points. The reference section at the bottom of Wikipedia entries should be your go to. Another quick trick is to use Google Scholar when performing internet searches. You’ll gain access to those peer-reviewed studies and papers I was talking about… information published in medical journals by doctors and scientists and researchers. Doctors love that stuff.
  2. Take information with you to your appointment. They’ve been telling us to take a list of questions to our medical appointments for years. Don’t just write down random facts. Either cite your information, or print the information and highlight the facts you wish to discuss with your doctor. This later tactic is more effective because you can leave a copy with your doctor, they can put it in your file, and they can take time to look at the information before your next appointment.
  3. Better yet, send your doctor the information prior to your appointment, or schedule a follow up to specifically discuss information. When you have a medical appointment, it is scheduled for a specific amount of time to accomplish certain things. When your appointment runs long, it backs up the entire office for the day. This is why we have to sit in waiting rooms so long. Let’s stop the insanity, as Susan Powder would say, and be courteous to other patients by doing what we’re scheduled to to in our appointments. If you can e-mail or drop off information you’d like to discuss with your doctor ahead of time, it makes things smoother. It also makes them feel like they aren’t bombarded. If you schedule an appointment to for the sole purpose of discussing information you’ve found, all the better.
  4. Bring up information tactfully. So you’ve printed your verifiable information out, you’ve scheduled your special appointment to talk about it. How do you actually talk about it? The goal is not to make your doctor feel like your trying to prove them wrong or go behind their back. I know that you’re paying your doctor and you shouldn’t have to worry about their feelings, but your relationship with your doctor needs to be a partnership. You need to trust them, and they need to trust you. You trust them to give you accurate care. They trust you to follow their care instructions. Get it? Good. So don’t mess that up by being a jerk about new research you’ve found. Instead, approach it tactfully. Saying things like, “I’m interested in this new research because it seems similar to my condition and I’d like to get your thoughts,” or “the medication/treatment they talk about in this medical journal article sounds promising, is this something that could work for me?” will allow your doctor to weigh in on the information. It’s teamwork. Yes, doctors should provide good customer service, but you should also be a decent customer. It’s your health, after all, and you need to take some ownership.
  5. Handle rejection graciously. You might be really excited about the information you found online. If your doctor isn’t as excited as you are, or if your doctor tells you that the information you found doesn’t apply to your case, it can feel like rejection. Listen to your doctor, but also feel free to ask them why it doesn’t apply to your case. Don’t be combative. Don’t argue. Just make sure you have an explanation that you understand. And, remember, if you wholeheartedly believe that your doctor isn’t giving you proper care… there are other doctors out there. And there is never harm in asking your doctor if a treatment is something worth trying, even if it doesn’t necessarily apply directly to your condition.
  6. Handle acceptance graciously. The same advice goes if your doctor embraces the information you’ve provided. This is not an “I told you so” situation. Teamwork, remember. Think of this as a great chance to bond with your doctor and build stronger trust. You trust that they will listen, and they trust that you are taking your care seriously and not wasting their time. Win win.

I absolutely encourage you to be knowledgeable about your condition. I encourage you to use online information and books and support groups. I encourage you to share this information with your doctor. I shouldn’t have to say that your doctor has a skewed perception of reality due to the nature of their work, but I do. Doctors hold themselves apart from their patients and above their patients. They have to to emotionally protect themselves and to do their jobs well. The cost of this is that ego can cloud a doctor’s listening skills. You deserve good medical care and a doctor who will listen. If you don’t feel like you have that, speak up, or make an appointment elsewhere.

I made a video a long time ago about doctors… here it is, in case you need a refresher:

Image courtesy of Gualberto107 at FreeDigitalPhotos.net

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. 

When Your Friends Disappear — Pain News Network

I lost many things during my diagnostic process and beyond, and friendships had the highest casualty rate. Pat Ackerberg had a similar experience and has some wisdom to share:

“Now, more than ever, you look to your closest friends or family to stand by you and catch you before you fall and break, like Humpty Dumpty.

But like a “trust-fall” exercise gone wrong – right when you need their safety net the most – they aren’t there!  And you fall hard.” – Pat Ackerberg

via When Your Friends Disappear — Pain News Network.

Why I Talk About Pain & Depression & You Should Too

Depressed vs. Depressing

Many people in my life know me as a cheerful, friendly person. I’ve been called caring and giving. Someone once even went so far as to call me “sunny.”  Those aren’t ways in which you’d expect to hear a person living with extreme chronic pain and depression to be described. When people hear “chronic pain and ” they often think “miserable, awful, unbearable”… “sunny”  is the last word they’d use.

And that’s why I talk about what is happening to my body and my mind. That’s why I share the darkest thoughts that I have, and my bad days, and my painful hours through this blog. I feel that it is important for people to understand that a human being is not the sum of their diagnosis. I am not my pain. I can be miserable and I can enjoy life.

I have moments when I don’t want to live. The remainder of the time I’m thinking about how thankful I am for the time I have with my family. I have moments when my pain is so tremendous that everything else in the world stops and I am alone in a dark room, enshrouded by despair. I also have functional hours where I suffer through putting on makeup and socialize, smiling and laughing with my friends… pretending that the pain doesn’t exist.

Accepting Myself

My pain and depression and anxiety and my ASD don’t ever go away. These are things that are part of me. I used to be ashamed of them. I let people make me feel ashamed of them. I allowed doctors and friends and family to tell me that these were things to get over… from which I had to recover. I allowed other people’s discomfort with my health and mental state dictate how I interacted with the world. Mind you, I’m not saying that I’m not trying to find a cure for my chronic pain or proper treatment options to manage my depression or anxiety. I very much want to stop the pain I live with daily and I would love to live without negative thoughts. However, these things are part of my current existence and I shouldn’t have to hide them. I most certainly shouldn’t have to be ashamed of them.

ASD is not a thing to be cured. My Monster Migraine is not my fault. Depression and anxiety are also not my fault. These are not things I am doing wrong in my life. ASD is how my brain processes information. The rest is unfortunate, but part of who I am now.

But guess what? I’m also a positive, sunny, caring, helpful person who smiles and laughs. I’m silly.

Why I Won’t Shut Up

I talk about pain and depression because they are things that happen to me. I want the people I know to understand what I’m going through. I want people who might be going through similar issues to feel like they aren’t alone. I want the medical community to understand that patients are human beings who share their experiences, deserve the best possible care. Frankly, I also find it therapeutic to talk about my issues freely and be part of a community of people I consider to be survivors of themselves.

I’m not talking about the latest breakthroughs in anti-depressants during entire social engagements. I’m not waxing philosophical about suicide prevention around the dinner table. I am being honest with people when they ask how I am, and correcting misinformation in conversations when I hear it, and updating people if they show curiosity about my condition. Therefore, talking about pain and depression doesn’t have to be a constant endeavor, it just has to be something that I’m open to when the opportunity arises.

Why You Should Talk About Your Pain & Depression

Aside from the obvious therapeutic benefits that being heard and understood can provide, you would be amazed how may people don’t know about your condition. You’d also be surprised how many people know a little bit about your condition, but what they do know is horribly incorrect. You’d also be surprised that for every few people you talk to openly about your pain and depression, you may be giving someone the strength to speak out about their own suffering.

I would not have started this blog had it not been for other people who had the courage to talk about this weird thing going on with their brains. I would not have become an advocate for mental health awareness. I wouldn’t have learned as much as I have about.

You should not be ashamed to talk about suicidal thoughts, depression, anxiety, or chronic conditions because they aren’t your fault and because there are people who will support you. You may not know those people yet, or you might be surrounded by those people right now and they just don’t know how to help you and support you because they don’t understand what you’re going through.

Talk about it. I do. It helps.

Where and How to Talk About It

Here is a My Brain Hates Me (very much not a medical or psychological professional) Guide to ways to talk about what’s going on with your body and your mind:

Managing Acute Pain Episodes in Patients With Chronic Pain

“In the 18th century, the French philosopher Voltaire said, “Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of which they know nothing….” He also opined that “…it is dangerous to be right on matters on which established authorities are wrong.” If he were alive today, writing a tome on pain medicine, it would be easy to imagine Voltaire describing physicians as people who withhold medications of which they know a great deal, to manage painful conditions of which they have learned even more, in human beings who perceive them as knowing nothing, amidst a regulatory climate that scares the hell out of them.

In the 21st century, it is ironic that although we have made significant advances in our understanding of how pain affects the nervous system and continue to develop innovative treatments, many pain sufferers, including dying cancer patients, receive little or no treatment. One possible explanation is the dizzying development of scientific theories of pain physiology, including the different subtypes of pain and the associated improvements in available treatment options, counterbalanced by increasing regulatory scrutiny and limited financial resources for some patients.

Breakthrough pain is a perfect example of the need to understand and treat all of the different pain subtypes. As is typical in pain medicine, breakthrough pain first came to the attention of clinicians in the cancer population. In 1990, Portenoy and Hagen[1] proposed that transient flares of pain in a cancer patient with stable persistent pain treated with opioids be defined as breakthrough pain. However, breakthrough pain is neither specific to cancer pain, nor is it purely an opioid-related phenomenon. Cancer pain often is the catalyst for improving the nomenclature used to describe the different types of pain, and advances in opioid pharmacology often help to define these changes.” – Daniel m. Gruener, MD

via Managing Acute Pain Episodes in Patients With Chronic Pain.

Scientists Discover a New Part of the Human Body | Mental Floss

The discovery, published in Nature, has shaken up the scientific community. The study was headed by Antoine Louveau, a postdoctoral fellow in the lab of UVA’s Jonathan Kipnis, director of the Center for Brain Immunology and Glia. The team detected the vessels after Louveau developed a method for mounting a mouse’s meninges (membranes covering the brain) on a slide without ruining the delicate tissue. When he saw vessel-like patterns in the distribution of immune cells, he tested for lymphatic vessels—and the results surprised everyone. They were also able to find the vessels in human brain samples.

‘This find is the neuroimmunological version of stumbling across a unicorn. Not only had the system gone undiscovered until now, but textbooks argued against its very existence. As a result, neuroimmunologists have struggled to understand the mechanisms of brain drainage and inflammation.

When all other tissues in the body become inflamed, molecules or pathogens are drained into the local lymph cells, where immune cells get activated to continue the fight. “In the brain, we thought this system didn’t exist. When we first saw those vessels, I completely freaked out,” Kipnis tells mental_floss. “This discovery is as exciting as it gets.”’

via Scientists Discover a New Part of the Human Body | Mental Floss.

Cefaly & MONSTER BRAIN Shirt Update

It’s your last chance to get a first run original MONSTER BRAIN shirt designed by yours truly.

CLICK HERE TO GET 25% OFF!

I received an e-mail from the good people over at Cefaly. They weren’t able to link the prescription my doctor faxed with my order, and asked me to have my doctor re-fax my prescription along with my order number so they can link it up. The amount of sighing that has occurred as a result cannot be explained. It has not been a good week, and I was really looking forward to trying the Cefaly out and getting some results.

I’ll take any shift downward on the pain scale, thank you.

Fingers crossed.

Cefaly: Migraine Technology

Last night I placed the order for my Cefaly, the prescription only space princess tiara that’s supposed to help reduce my pain. Cefaly, according to their website, emits electrical impulses that are designed to act on the trigeminal nerve. The trigeminal nerve is the largest cranial nerve. Its mostly used for sensory processing but it’s also the nerve that helps us chew and swallow.

Facial pain that often accompanies migraine is attributed to this nerve.

When I last saw Dr. H., I discussed the space princess tiara that is Cefaly with her and she said that anything was worth a try. We also discussed the fact that, at this time, I’m not going to the Jefferson Headache Center or subject myself to further hospitalization at this time.

Her response was compassionate, if a little concerned that I’m giving up on the Headache Center for now. It’s not about giving up. It’s about risk and reward. The cost, strain, and trauma of being hospitalized is just too much for the results I get out of it.

My doctor’s next question was expected. She asked what she could do for me when she feels like she’s reached the end of her expertise. I told her she could keep me comfortable, keep me Botoxed, keep trying new medications with me. I asked if there were different pain options… there weren’t.

So I’m going to zap my trigeminal nerve with Cefaly. It should arrive soon, within the week. I’ll review it, and perhaps do a weird unboxing. Cefaly isn’t covered by insurance. It’s $349 plus $25 for a set of 3 electrodes that are supposed to be good for 20 uses each, and you also pay for shipping and handling. It takes AAA batteries. Cefaly has been approved for use in the US by the FDA for about a year. To buy Cefaly, you have to have a prescription. My doctor faxed my prescription the day she and I discussed it and I placed the order about a week and a half later. Your order must be placed within 2 weeks of the prescription being faxed.

New Year’s Go Fund Me Update

Happy New Year!

My husband will be driving me up to Philadelphia next month for my check-up with the Jefferson Headache Center. This will be a not-so-fun 11-12 hour round trip, including my appointment. I see my local neurologist later in the month.

For now, we’re still holding off on the Neurofeedback therapy. I ceased the treatment because we had gotten to the beginning of a new protocol that leads to more expensive sessions at the same frequency. While I initially believed the Biofeedback treatment I was receiving helped with nausea, I think that it has been the Botox all along. This is a good thing. My nausea frequency is down.

I’ve been living in the 7-10 pain range for the past few months. I’m not looking forward to the prospect that JHC is going to want to do inpatient treatment, given the short-term duration of the results. My goal is to ask for a medication switch-up either with dosages or actual type of chemicals.

I hope everyone had very happy holidays! Here’s hoping 2015 is a good head year.

-My Brain Hates Me

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