Trigeminal Neuralgia & Status Migrainosus

What is a Migraine?

Migraine is a chronic neurological disorder characterized by recurrent moderate to severe headaches often in association with a number of autonomic nervous system symptoms. The word derives from the Greek ἡμικρανία (hemikrania), “pain on one side of the head”,[1] from ἡμι- (hemi-), “half”, and κρανίον (kranion), “skull”.[2]

Typically the headache is unilateral (affecting one half of the head) and pulsating in nature, lasting from 2 to 72 hours. Associated symptoms may include nausea, vomiting, photophobia (increased sensitivity to light), phonophobia (increased sensitivity to sound) and the pain is generally aggravated by physical activity.[3] Up to one-third of people with migraine headaches perceive an aura: a transient visual, sensory, language, or motor disturbance which signals that the headache will soon occur.[3] Occasionally an aura can occur with little or no headache following it.

Migraines are believed to be due to a mixture of environmental and genetic factors.[4] About two-thirds of cases run in families.[5] Fluctuating hormone levels may also play a role: migraine affects slightly more boys than girls before puberty, but about two to three times more women than men.[6][7] Propensity for migraines usually decreases during pregnancy.[6] The exact mechanisms of migraine are not known. It is, however, believed to be a neurovascular disorder.[5] The primary theory is related to increased excitability of the cerebral cortex and abnormal control of pain neurons in the trigeminal nucleus of the brainstem.[8]

Initial recommended management is with simple analgesics such as ibuprofen and acetaminophen (also known as paracetamol) for the headache, an antiemetic for the nausea, and the avoidance of triggers. Specific agents such as triptans or ergotamines may be used by those for whom simple analgesics are not effective. Globally, approximately 15% of the population is affected by migraines at some point in life.”

via Migraine – Wikipedia, the free encyclopedia.

My Diagnosis

As a child I had an “unclassified seizure disorder” and when I stopped blacking out, I started getting migraines. I suffered migraines all through Middle and High School, taking Midrin for them as needed. They were just a part of my life. During those years they would last 1 to three days but the pain was manageable and I rarely missed school because my head hurt. I had plenty of other ailments that kept me home, mind you.

When I was 19 I became pregnant with my son, and some magical combination of hormones kept my migraines at bay for three years. Then, suddenly, my migraines were back and were worse than they had been. Instead of just head pain on the left side, I suffered extreme nausea, dizziness and some aura before my migraines started. They became bad enough that I had to use FMLA time away from work. I sought treatment from a neurologist.

The neurologist diagnosed me with chronic migraines at that time, which means that I was having migraine symptoms for more than 15 days in a month. I was given a variety of abortive medications like Imitrex  and put on Topamax as a preventative. The only pain relief that worked was Mepergan Fortis, a narcotic pain reliever that had phenergan, an anti-nausea element, mixed in. When the pain was so bad I couldn’t stand it I would get shots of Demerol and phenergan in my hip.

By 2005 I was on a high dosage of Topamax and my migraine frequency had been reduced to one or less per month, so my neurologist started to wean me off the medication. My migraines stayed manageable for a few years. I was able to take over the counter medications such as Excedrin Migraine for relief and usually a bath and a nap would fix me right up.

In 2008 I had an increase in frequency and severity of my migraines, so I started taking one Excedrin Migraine every day as a preventative. My doctor had a fit when she found out, of course, and told me to see my neurologist. My neurologist was no longer in the city so I took what my doctor prescribed and went on my merry way.

In 2011 I got a Mirena IUD. In June of 2012 I started getting horrible migraines that made me miss work and had to take FMLA time yet again. In July of 2012 I ended up in the emergency room with the worst headache of my life, that was different than my migraines had been, but my CT scan came back clear. I had my Mirena IUD removed. I was put on Topamax and Nortriptyline as preventative medications, and given a variety of pain options. In the beginning of August I got a migraine and it hasn’t gone away since.

Several doctor horror stories and a few months later, in October, I was referred to a headache specialist and she has had me try a variety of treatments, including infusions and Botox injections- all of which is documented in this blog.

She finally diagnosed me with Status Migrainosus, which is a migraine that lasts for more than 72 hours. Mine has lasted since August, 2012.

At my last appointment my doctor took me off all preventative medication. These medications have to be stopped gradually, as suddenly not taking them could result in horrible side effects. As of May 20th, 2013 I am no longer taking Topamax, and I am in the process of weaning myself off of Nortriptyline. I agree with this plan because I was recently diagnosed with Asperger’s Syndrome or High Functioning Autism… whatever you want to call it. As such I worry I am more sensitive to these medications than previously known. My hypothesis is that my body is overwhelmed and that is causing the constant pain signaling from my brain.

July, 2013 Update

Unfortunately, my symptoms are worse off of the Topamax and at my current dosage of Nortriptyline. My current treatment plan needs to be revisited.

I had an appointment with the Jefferson Headache Center in July, 2013. If you click the link you can read all about my current treatment. My diagnosis may have changed to Hemicrania continua, which is being determined by taking the treatment for the condition and seeing how successful it is. I am up to 150 mg of Indomethicin starting today, July 24th, 2013.

I will be hospitalized at Thomas Jefferson University’s Methodist Hospital on July 31st for a 3-5+ day treatment (depending on my response.)

Wish me luck!

August, 2013 Update

It’s not Hemicrania continua, although the Indomethicin does provide minor symptom relief. No religious experiences, however.

Jefferson Headache Center Hospitalization Update

Read about my experience:

New Plan of Attack, Philly Style (Jefferson Headache Center) – MONSTER MIGRAINE

Methodist Hospital Update

M.A.P.S. – An Introduction

Breakthrough? OHMYGOSH

M.A.P.S. Group – Honouring My Journey

Current Jefferson Headache Center Treatment Plan

December, 2013 Update

I’m still receiving Botox treatments, and my local doctor just did another nerve block today. My doctors have increased my Mexiletine dose to 600 mg daily. Topamax is at 200 mg daily. I’m still taking Clonazepam to sleep… which doesn’t help much. I rely on my Seroquel when it’s bad. My baseline pain level has been back up in the 4-6 range since the end of September (as opposed to 2-4 after Jefferson) and I seem to have a few good days then a few bad days. Good days are 4s. There are no 1 -3 days anymore. Weather affects me more severely, giving me flu-like aches and pains in addition to my head and shoulders and other fun symptoms. My sleep has been better the past few weeks, but I still have a sleepless night here and there. Christmas is upon us and I’m hoping for a new brain!

It’s been approximately 15 months since this adventure? tragedy? condition? began. In that time I’ve lost my mother, battled insurance and disability companies, won Government disability benefits, continued my schooling as best I could, tried to smile as much as possible, and cried more than I ever thought I could cry. And believe you me… I’m a crier. So that’s really saying something. I’ve made some kind of peace with God. I’m still pissed off but I feel like it is healthy to be pissed off. I’d rather be angry and fight than just give up and let this win. My head will stop hurting.

My head will stop hurting.

My head will stop hurting.

Holidays, 2013-2014 Update

Nerve Blocks Are Fun! No, Really. Day 2 Update. Day 3 Update. The Last Block Update.

December has not been very easy. My pain levels are up higher. I’m back in the 7-10 range regularly and emotions are running hot in my household. My neurologist in Richmond attempted to reproduce the nerve block performed on me at Jefferson in August, 2013.

March, 2014 Update

I had another Botox treatment. I don’t believe that they are helping, but I have an appointment to see my doctor at the Jefferson Headache Center for a follow-up on the 31st. I anticipate a scheduled hospitalization thereafter so I want a fresh Botox to work alongside the therapies/medications I receive in the hospital. At this point I feel very broken and victim to the pain. I try my best to be strong for my family, but the facade I’ve kept up for so long has cracked and my HFA and the pain are playing off on another. It is as if I am a mad woman. My meltdowns are entirely out of control and I believe the Mexiletine may be at fault. Dr. H. is having me get labs done to check the level of Mexiletine in my blood so Jefferson will have it. I go Monday so I won’t be able to get my blood drawn until after I go to Philadelphia. I am not looking forward to the ride to Philly, the prospect of hospitalization. Any of it. I’m not very hope-filled right now.

Jefferson Headache Center Follow-Up (March 31) Update

Based upon my psych-screening intake forms, my doctor at the Jefferson Headache Clinic has come to the conclusion that I have been dehumanized by the extreme level of pain I’ve been in over the course of the last 19 months, especially since the turning of the year. My thoughts of suicide but indication that I would not act, my utter lack of social… anything save for few and far between activities that I carve out for myself. My lack of self-esteem… all of these things, etc etc etc.  I feel sub-human, therefore I am become sub-human. Thank goodness they understand.

His concern is that medication is exacerbating existing tendencies towards depression and anxiety so he has taken me off of Mexiletine entirely. Cold turkey. I am, as I knew, to be admitted to the Thomas Jefferson University Hospital at Methodist (as I was in late July, 2013 [see above]) where I will be tapered off of Propanolol. Propanolol also has a depression-causing side effect and causes weight-gain (thank you 20 lbs, please go away now) because it restricts involuntary muscle movement. Interesting!

I am to begin taking Butterbur, an herb used as far back as the 14th or 15th century. It has no documented negative side effects. It has been used as a migraine/headache preventative for centuries and also helps with anxiety, pain, intestinal issues, and insomnia. It can “stimulate the appetite” but I’m nauseous and lack appetite most of the time so perhaps it will encourage me to eat lunch. I take 75 mg twice a day.

May, 2014 Update

Jefferson Headache Center Hospitalization

I was hospitalized in Philadelphia on May 5th, 2014 with pain level of 8.5 on a 1-10 pain scale. They inserted a PICC line in the early afternoon that Monday. I left with zero pain. On Wednesday night I was pain level 2 when I woke. The doctors decided to do a nerve block that afternoon. I received 3 injections of lidocaine to numb the area mixed with something else I cannot remember the name of that does the actual blocking.  As soon as my PICC line was in the nurses began the following routine:

  • Constant Lidocaine .5 mg/min drip steadily increased to 4.5 mg/min over the course of the 6 days I was there, with which I experienced only one abnormal dream and no hallucinations
  • Reglan at I think 2 mg/min for 20 or 30 minutes then DHE for 30 minutes both every 4 hours. The DHE dose started at .5 mg/min and increased to 1.5 or 2 by the last morning. I stopped paying attention. Not everyone can tolerate DHE, but you get to leave sooner if you can. It all depends on your heart
  • TORADOL®(ketorolac tromethamine) after the DHE. I can’t recall the dose. It ran for 20 minutes. It’s an NSAID pain medication. They will only give you 9 doses, so I only got 3 a day for 3 days. 3 days is the magic pain medication number. No more than 3 days of pain meds straight, and no more than 10 days taking pain meds a month. Otherwise if you are admitted to the Headache Center they will add an additional 3 days to your stay just to detox you from the pain medication. I haven’t been through that because I am not a happy medication taker, but I can’t imagine it’s fun. 
  • 2 initial EKGs and daily EKGs at 9 PM
  • Blood draws! Every morning at 4 freaking AM. They will turn on the brightest lights and they will just randomly stab you with needles and bruise the hell out of you
  • Heparin shots in your belly a few times a day to prevent clotting
  • Heparin and saline flushes in the PICC lines to prevent clotting
  • Jean Paul Gautier inspired boot-like pressure things that go on your legs and make you feel either claustrophobic or like a pampered, massaged, Hospital Octopus. I chose to feel like a Hospital Octopus… hooked up to ALL THE THINGS
  • Meals that smell funny, but the grits are good

I left the hospital around Noon on Sunday, May 10th, pain free… just in time for Mother’s Day.  They have added Lexapro and iron supplements and Zanaflex (Tizanidine) to my daily meds. Lexapro I have taken before for depression, and it also has a nice anti-anxiety bonus that should help my HFA-brain stop being such a worry-wort about pain. The iron is because, as usual… anemic. YAY! And the Zanaflex is another rescue medication. I take Clonazepam nightly for insomnia and it has the anti-anxiety bonus. I take Midrin for pain PRN. I take DHE in nasal spray and injectible form as a rescue at a level 8 or higher (I think that’s the number. I don’t have my treatment plan in front of me.) I take the Zanaflex when I have severe insomnia and/or severe pain. So Zanaflex is the last line of defense and it isn’t a pain killer, it’s a muscle relaxer. I’ve had one. I was out in half an hour and awake at 4 am. Unfortunately I was at home and there was no one who needed to take my blood, so I just talked my husband’s head off.

May 12th. My head is pokey. But it’s still a 0-1. It’s workable.

May 25th. I’ve been in the 1-5 range with several 6-7 days scattered throughout. This is an improvement. I have followup appointments coming up next month with both neurologists.

July, 2014 Update

My pain levels have increased. I’m back in the 4-7 pain range. I’m continuing with Biofeedback and Art Therapy as well as keeping up with Botox treatment.

August, 2014 Update

Unfortunately, it seems like my head is rebounding after hospitalization harder this time. I am in the 7-10 pain range more frequently than not. It’s a delicate balance. There has been one change to my medication, the addition of Feverfew.

October, 2014 Update

I have not shown any improvement. I haven’t started the Feverfew. I have to order it. I go to Philadelphia next month and have my follow up next month with my local neurologist. I have had to suspend Biofeedback for now because it is far from my home and driving has become something of an ordeal. Art Therapy is much closer and I feel more comfortable in the neighborhood if I have a situation. It is near where I used to work. I feel like I could call someone for help if I truly needed it. Finances are also a consideration. My pain levels have rarely been below an 8. I have had the occasional 6 day after DHE and pain medication, which (of course) is used sparingly and per doctor’s orders.

The past month has been about renewing my SSI and my Long Term Disability- all of which has been stressful.

I believe the Botox is the primary cause for reduction in my nausea.

July, 2015 Update

It’s been a long time since I’ve done a medical update because there has not been a lot of change. My SSI was renewed with no issue. My Long Term Disability claim was denied and I’ve been in the appeals process with them since February. This means that I don’t have full benefits or prescription coverage. I do have some coverage through Medi-whatehaveyou for doctor and hospital visits.

I have decided at this time to discontinue treatment at the Jefferson Headache Center, not because I don’t think they are a wonderful facility, but because the hospital trauma is not worth the reward. I am continuing my work with my very dutiful local neurologist.

I did begin using the Cefaly treatment device this month and I am still evaluating how it fits into my regime. The only other medication changes have been: an increase in Lexapro to 20 mg, an addition of multiple brain-happy supplements, and struggling to pay for prescriptions because I don’t currently have prescription coverage. Fingers-crossed this is soon resolved.

August, 2015 Update

I have a possible diagnosis to discuss with my doctor at my August 6th appointment: trigimenal neuralgia. I’m scheduled to have Botox done on that day. If my suspicions are confirmed, it opens a whole world of treatment options up to me. We’ll see. the 6th is tomorrow. Having a name for my condition would be earth-shattering.

I have a theory about how all of this has happened, but I’m hesitant to voice it until my doctor confirms my suspicions. We shall see. I’ve been very suicidal since May.

Post August 6th Appointment, 2015 Update

I saw my local neurologist. I had Botox treatments and asked about trigeminal neuralgia and the gene, MTHFR. The following things happened as a result of my conversation:

  • My doctor could not rule out trigeminal neuralgia (TN)
  • I was placed on Oxcarbazepine (Trileptal) taken as follows: 150 mg 2x daily for two weeks, and then increase to 300 mg daily 2x daily after that. This medication is an anti-seizure medication used primarily to treat TN and if I have any reduction in pain it means that TN may be one of many underlying causes for my condition
  • Insurance doesn’t cover gene related to migraine, MTHFR and there are no existing therapies that have any proven research
  • MTHFR has been linked, however, to a condition called Patent Foramen Ovale (PFO), which is a hole in the heart
  • I am having an echocardiogram to rule out PFO. In the event I do have PFO, my doctor recommends surgery ASAP

I have been taking the Oxcarbazepine 5 days. It causes dizziness and makes me sleepy. I am supposed to look out for rash, which can be deadly. It can also suppress bone marrow activity so I’ll be getting blood work. My nerves are shot waiting for my skin to fall off, and I have hives as a result.

I have had a slight reduction in pain since I began taking the medication. This could be due to the Botox treatment I received or the Oxcarbazepine. I’ve know way of knowing. I had a 6-7 day on Friday and it was the first day I’ve had like that in 8 months. Since then there has been too much familial upset in my home causing emotional distress affecting my pain levels. I haven’t been below an 8 since Friday evening.

Post November 3rd Appointment, 2015 Update

I had an echocardiogram on October 29th (which was long and painful- do not recommend, 2 stars) and a bubble test for PFO. I saw my neurologist on November 3rd to discuss the results of my echocardiogram, re-up my Botox, and determine if I have Trigeminal Neuralgia. Here are the outcomes from that appointment:

  • My echocardiogram came back as most likely negative for PFO. The only way to be certain would be to do an endoscopic echocardiogram. However, given my response to Oxcarbazepine with reduced pain levels here and there, my doctor no longer feels surgery to close any existing PFO is urgent, so she is not ordering this at this time
  • My doctor did not give me Botox injections above the eyebrows because I experienced drooping from my last series of injections
  • My doctor diagnosed me with the disease Atypical Trigeminal Neuralgia given my pain placement history and my response to Oxcarbazepine
  • Blood was drawn to check my levels and determin if my Oxcarbazepine dose may be increased from 300mg twice daily (or 600 mg total) to yield better results

November Updates

Since diagnoses with Atypical Trigeminal Neuralgia (TN2) I have begun acupuncture and am following protocols set forth for treatment of Trigeminal Neuralgia. I will see my acupuncturist twice a week until I see results.

5 thoughts on “Trigeminal Neuralgia & Status Migrainosus

  1. I have been diagnosed with status migrainosus since September 2014. I have tried numerous treatments and nothing has worked. The nerves in the back of my head have been hurting since February 2015. A surgeon said I have occipital neuralgia. The surgery is going to cost. $14,000. I currently do not have insurance. I have a disability case that I am pursuing. I would like to get the surgery, but it is very expensive. I am tired and I am hoping that this is all due to my menopause, which occurred at the same time that the migraines started. I hope this stops as I get older! I wish b there was a cure for all of us!

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