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.

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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. 

8 Ways to Live With a Chronic Illness | World of Psychology

“…I’m shifting my energy from finding a cure to learning how to “live around” the illness, turning to people with debilitating conditions like fibromyalgia, lupus, and chronic fatigue syndrome–as well as to scientists, meditation teachers, and great thinkers–for instructions on how to manage painful symptoms. Here are a few gems I have picked up, tips on how to dance in the rain … and where to find the courage to try again tomorrow.”

8 Ways to Live With a Chronic Illness | World of Psychology

It Hurts to Do Anything, Might As Well Do Someting

I’ve been in 9-10 level pain hell for the past two days with no dips back down to 8 where I have uncomfortably hovered for the past 6 months. Nothing I do makes it feel better, but nothing seems to be making it worse.

My attempt at productivity today has been a tad successful. Every 15-30 minutes or so I sit up, do a thing on the computer that takes maybe 2 minutes tops, and then curl back into a ball.

However, I don’t know what the quality of said productivity is, because I’m looking at the screen with my left eye closed and my right eye squinting. Bed rest is absolutely the best thing for me right now. But bed rest is ALL I DO ALL OF THE TIME.

Bed rest is boring.

I can’t eat. I can’t sleep. I can’t stand to listen to anything today. Between the nausea and the light sensitivity I just want to cut my head off.

Is cutting my head off productive? I don’t believe it is. But I could be wrong about that.

Stay cheery, Brain Victims

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.

Cefaly Unboxing by My Brain Hates Me [Video]

I recently received my Cefaly space princess tiara. The Cefaly is a medical device that is intended to act as prophylactic migraine treatment. I have an intractable migraine that never goes away. I’min pain 24/7, 365. My neurologist thought this might be a good treatment to try. It does require a prescription.

For more information, visit the Cefaly website: http://www.cefaly.us/

To see me use and review the Cefaly click here! 

Great News For Migraine Sufferers – New Class Of Drug To Prevent Chronic Migraines

“CGRP (calcitonin-gene-related peptide) is a specific biochemical which is being targeted through his new class of drugs. Clinical trials have proved that these drugs can be an effective measure in preventing migraine in a significant amount of the population of headache sufferers.

The American Headache Society chair of the scientific program and chief of the University of California, San Francisco Headache Center, Dr. Peter, Goadsby states that researchers have identified the important role CGRP plays in the development of migraine headaches, since 20 years.

It has been known since 20 years that the body requires CGRP in order to control the opening of blood vessels. Ward believes that CGRP plays a very vital role in pain signal transmission.

“The last step in the pathway we think to setting off headache is this substance called CGRP. This material is released by nerves, and when released it causes inflammation in the nervous system.” states Ward.

Ward is strong in his belief that this will be the first that migraine patients will get drugs for prevention.”

via Great News For Migraine Sufferers – New Class Of Drug To Prevent Chronic Migraines.

Experience a Migraine Through Virtual Reality | Mental Floss

“If you’ve never had a migraine, you might imagine it as just a bit worse than your run-of-the-mill headache, or assume the sufferer is using it as an excuse. But anyone who’s experienced a migraine knows that they can be debilitating. That’s why Excedrin has created a Migraine Simulator, a head-mounted display (HMD) that uses the Oculus Rift development kit (DK1) to give users a sense of what a migraine is really like.

The experiment involved having family and friends of migraine sufferers wear the HMD for 30 minutes during a normal day to see what it’s like to suddenly develop—and carry on working during—a severe migraine. Each user’s visual display was individualized to replicate the exact visual symptoms of their partner. Using an HMD modified to include a pass-through camera and connected to a PC rig worn on the user’s back, the wearer could see what it’s like to have auras, light sensitivity, blurred vision, dizziness, and vertigo.”

via Experience a Migraine Through Virtual Reality | Mental Floss.

Insomnia and Pain

“Insomnia causes migraines. A study of 1869 migraines clearly showed that “sleep obviously protects against [migraine] attacks rather than provokes them,” while a whopping 29% were actually caused by insomnia. I don’t know about you, but anything that protects against migraine attacks is good and I don’t want to lose much of it.”

via Insomnia and Pain.

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.

New Treatments for Chronic Pain

“Fifty years ago, when someone hurt, we thought it was just a symptom of something else. But we now know the symptom of pain can become a disease in and of itself, and that disease is similar to other chronic conditions that can damage all aspects of someone’s life.” – Scott M. Fishman, MD

via New Treatments for Chronic Pain.

Living Around Pain

My son is about to leave for his busy summer of camps, mountains, and road trips. All together, he will be gone for six weeks, so we really wanted to make these past few days special. We made family plans to go to dinner and then go do something fun Friday night. Today, Saturday, we planned to run errands separately and relax before a long drive tomorrow.

My brain had other ideas. Friday was a level 10 pain day. Today hasn’t been much better.

I’ve been in the 8-10 pain range solidly for the past 6 months. I’m more than used to moving things around on the calendar because getting out of bed isn’t an option from one day to the next. However, I really wanted to spend some enjoyable quality time with the boy.

Rescheduling and cancelling plans is always disheartening. I cry a little nearly every time. It alienates friends and family, and, honestly, for long stretches of time it even feels easier to avoid making plans at all. I always hurt. It’s just a given these days. I do my best to hide it when I can get out and pretend to be human, but I spend most of every day in bed dreading the preparation it takes to put my human mask on. Letting the pain “win” isn’t a way to live, however.

Friday night my husband made frozen pizza for us for dinner and I did a DHE injection. Today, a level 8 day, we beat the pain by finishing up my son’s camp shopping as a family. Then, instead of going to a special dinner out somewhere, we got take out. We also got toppings and ice cream to make sundaes and watched a television show we always watch together. Dinner and dessert at home is much less impact on me, and we still spent some good time together.

I could have spent the weekend being bummed about how much I hurt and how it took my time away from us… but instead we took the time back and made the most of it.

And that is how you live around pain…

… you make the most of it.

24 Hours Left to Get 25% Off

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I Want This Space Tiara!

shunsociety:

airyairyquitecontrary:

Fantastic news for people who suffer regularly from migraine headaches. The FDA has just approved a wearable electrical stimulation device for sales in the United States — a headband that prevents the onset of migraines when worn for just 20 minutes each day.

A device like this is definitely long overdue. Some 10% of people worldwide suffer from migraines, a condition characterized by intense pulsing or throbbing pain in one area of the head, accompanied by nausea or vomiting and sensitivity to light and sound.

Developed by STX-Med in Beligum, Cefaly is a compact, portable, battery-powered, prescription device. It’s placed at the center of the forehead, just above the eyes, using a self-adhesive electrode. The headband then delivers transcutaneous electrical nerve stimulation (TENS) to the trigeminal nerve known to be involved in migraine headaches. The only known noticeable effect is a tingling or massaging sensation where the electrode is applied. It can only be used by people age 18 or older and should be used no more than once per day for 20 minutes. [x]

I appreciate the fact that they got a designer to make it look like a space tiara. They didn’t have to go that extra mile, but they did, because they care.

Relief beyond compare while simultaneously being a space princess? I’m in.