On Wednesday I noticed I had a rash on my arms, chest and legs. Fortunately, I had an appointment with my doctor that day. She was concerned but she didn’t want me to go into pain again as she had seen me in the exam room on my knees screaming and crying. Not a pretty sight.

The next day my MS neurologist was in the office at UBC and the very kind nurse at the clinic helped me get messages back and forth. He instructed me to wean off the Dilantin and then start up Lyrica to re-assess its effectiveness. I am scared to death. I know that pain won’t kill me but this is a pain unlike anything I ever thought possible.

We’ve also initiated a referral to the Centre for Cranial Nerve Disorders in Winnipeg. If I am deemed to be a good candidate, I can get surgery there within a month. We’ll see what the next couple of weeks brings our way.

We made this video when I was at UBC hospital waiting for a transfer to VGH for the rhizotomy. I was optimistic here and looking forward to a resolution to my pain after FINALLY being diagnosed with MS. Then the rhizotomy was cancelled because of fear of potential damage to my good eye. (Correction — surgery was cancelled because the Dilantin was working and all drugs need to be ruled out as surgery is the last option. Unfortunately, I happen to be quite sensitive to pharmaceuticals.) Since then I have been in increasing misery. The drugs make me feel sick. My brain has stopped functioning. I can’t do anything. I get no phone calls returned. I can’t drive.

I always used to think that if you were suffering as much as I am that it wouldn’t be like this.

I wish my mom were still alive. She would help me and fight for me. I miss her.

Last Wednesday, I was calling to cancel appointments as I managed to move up my MS Clinic appointment that was initially scheduled for December 13. I was having a lot of trouble talking, so my psychologist called me and told me I should get some help as she believed it was inhumane to leave me alone at home in so much pain. She contacted my doctor and then called me back and told me to get to her office. I called a cab and went. As I was there, I had several agonizing pain attacks and was on my knees sobbing in her office. I asked to be taken to UBC hospital so I would be in the same building as the MS Clinic and wouldn’t have to organize a trip from another hospital to UBC.

I didn’t know it, but UBC had been downgraded from an emergency department to urgent care, meaning that they don’t ordinarily admit there any more. Fortunately, one of the doctors at UBC is very interested in pain and they had a bed available, so I was admitted there.

We managed to get my pain under control with IV Dilantin (phenytoin) under the suggestion of the neurolgist I saw at the MS Clinic. It wasn’t difficult for him to make the diagnosis based on my history and the MRI I brought with me. What made it tricky was the fact that I have no motor deficits that you would ordinarily see, but the number of lesions in my brain and the different ages of them made it easy for the neurologist. I knew already that I had MS but it helped to hear it. I had held onto the hope that the facial pain was unrelated. But he came to see me the next day in my room to tell me a couple of things. The first was that he pulled my MRI scans out of the archives (as they had never been viewed) and looked closely at them with the radiologist. They could see a lesion on my right pons (a part of the brainstem) that made all of my symptoms consistent. And he also arranged to have me transferred over to VGH for surgery, a rhizotomy.

I had hoped to be able to finish this but my brain is in a fog from the Dilantin pills. I am not in good shape. The neurologist called on Friday. He had been away up north for an MS clinic and wasn’t able to advocate for me and surgery as he had hoped. He was afraid if the neurosurgeon saw me out of pain he wouldn’t operate. That’s what happened.

I am out of facial pain now but I am miserable. I feel sick to my stomach. My mouth tastes awful. I can’t do anything useful or productive. My husband is miserable. I am afraid for both of us. This is such suffering. It breaks my heart to see him like this but I am not myself now.

Yesterday evening, I took a sip of room temperature herbal tea and had several huge shocks in my forehead and scalp connected with the more burning pain around my nose and cheek and lower tooth. I dropped the cup and fell on the floor while I had another few more waves of pain. Daniel came in to help me get up and as I sobbed we both realized that we were out of ideas on how to manage the pain. We went to the ER at VGH. Fortunately, it was not too busy and we were seen quickly. We saw a very nice young doctor (gosh, they all look so young now!) and he had a few suggestions. We opted for the big guns as we need to address the pain. He had offered some thing to help with the anxiety and obvious depression but I know they are reactive to the pain.

They gave me the meds at the hospital. While trying to swallow one, I had a huge pain again and slammed my leg on the floor and flailed my arms. It seemed to surprise the nurse who had given it to me. These drugs also constipate, so I have to be on the alert for that. I’m eating less again as it’s so stressful. I need help from real pain experts. I’ll see my GP tomorrow and hope that I can get somewhere. I slept well — very drugged. Not able to drive any more while on these.

We filled the prescription this morning and an hour later I managed to have a shower and wash my hair — hurray! Then I made some oatmeal. I was eating it at room temperature when I had another big shock in my forehead. I took a break, then finished it. As I walked away I had one more big one in the forehead.

I’m absolutely stunned with the speed that this pain has progressed. A week ago I was doing well.

I thought today would be a good day to post this photo of my grandfather when he was about 20 years old. Charles Edward Evans was born in Halifax in 1896 and died in Vancouver in 1972. I believe he died of heart failure. I do remember that he died at home and Betty (my biological mother) found his body when she went to see him. I always knew I was adopted but didn’t know that Grandpa Evans was my ‘real’ grandfather until after he died. He is the father of both of my mothers.

I remember hearing that he was a pilot in the first world war. It sounded somewhat daring and exotic when I heard that but I never had a chance to talk to him about it. I was twelve when he died and we didn’t see him that often. When I found this photo in my mother’s collection of old photos, I recognized him. I wondered about the uniform. I was able to find the exact uniform on a group of cadets for the Royal Flying Corps, the precursor to the Royal Air Force and then the Royal Canadian Air Force. The most famous pilot in the RFC was Billy Bishop. This is a nice link to some interesting info on the RFC , including photos of Billy Bishop.

My grandfather was a realtor and a notary public. Apparently, he was gregarious and enjoyed people. He had musical talents and sang, played the piano, banjo and guitar. His three daughters were all gifted in music and other artistic endeavours.

I think he looks very handsome in this photo.

Yesterday we went to visit our neighbour whose 100 year old brother died on Friday. Several of her other siblings were there. We had tea and dessert loaves. That was the first bit of caffeine I have had since September 2011 in France. I had one small slice of lemon loaf.

Other than that, the rest of the day had been pretty uneventful — raking leaves, meals, jigsaw puzzle.

I had lots of bouts of breakthrough pain in my face in the evening. They were familiar. But when I finished brushing my teeth and washing my face, I moved a bit of hair from my forehead and had a painful, short and sharp electric shock from my eyebrow up to my scalp. Then I had another one from my forehead on my scalp up to the top of my head. I screamed and cried and had lots more of them. I’m already drugged more than I want to be, having more intense pain, deathly afraid, wishing I had died last year.

The area being triggered was the ophthalmic branch of the trigeminal nerve. The distribution area is the green on the diagram. Apparently, this one is the least often affected. Still trying to figure out how I got so lucky.

I wanted to find some help. The pain was 20/10 and shocking. All I could think about was going to emergency. Daniel talked me out of it saying that they wouldn’t do anything for me. I was crying and distraught, ready to go by myself. Eventually, my objective observer kicked in — the method I used when facilitating therapy sessions to view myself outside of my body for a more objective analysis of the therapeutic interaction — and I realized that all they would see was a ‘crazy’ woman. I’ve had enough garbage and errors on my medical records already. I didn’t need any more. He was right — they would probably just tell me to increase my drugs and call my doctor next week.

I crawled into bed and managed to sleep a few hours.

I had a rough day yesterday. The pain started to get much worse, breaking through more often. I decided to increase the Lyrica to three times a day. So far today it has been better with only a couple of small breakthroughs. The very worst part about all of this orofacial pain is the loss of oral pleasure — food, drink, conversation, kissing — all pretty much gone or affected so that I can’t enjoy them, even when pain free. My mouth feels and tastes strange. I don’t like it at all. And travel doesn’t seem the least bit realistic for some time, if ever again. This photo was in Sarlat, France, on September 27, 2011. I was already struggling a lot then but I kept trying to eat and have a good time. A week later I begged Daniel to take me home as I knew there was something wrong with my body.

Among my greatest life pleasures was dinner parties with great food, good wine, and interesting conversation. Daniel is a good cook and he’s downstairs making a dish we made once with turban squash and chorizo. I’ll head down in a few minutes to reheat something simple. Now that the phone doesn’t ring and the e-mails are few and far between, there is really no social life any more. Daniel is still with me and we do things together. It’s a good thing we like each other and enjoy each others company. I am hard to be around when I’m in pain.

I’m sure I’ve mentioned how much I hate these drugs. I feel dopey and less alert. They tend to constipate me. If you read the list of side effects, you’d be freaked out like I was. But the pain is too much to bear and it’s a trade-off.

I have been going to an MS support group on Friday afternoons and it’s a great place for me to talk with people who understand neurological pain. A couple of members who have lived with MS for a while told us that they were told that there would be no pain with MS. It’s amazing because pain is a big part of it for many people with MS — not all, but many.

I don’t know how many people read my blog and it doesn’t really matter. It helps me keep track of the process of working through this health situation. For those of you who are reading and aren’t familiar with chronic and intense pain — as I wasn’t — I’m going to try to explain what my pain was like and is like now. I do hope that some people who are reading this may be people who work in health and who might gain some insights into dealing with people in pain. Or maybe just me if our paths happen to cross . . .

Prior to May 2010, my most painful experiences were breaking my arm when I was 12 years old and throwing out my back when I was 35. When I broke my arm, I was playing volleyball and fell backwards on my extended left arm and it snapped. I broke the radius and the ulna (both arm bones between the wrist and the elbow) and they were bent upwards at a 45 degree angle. That hurt. At St. Vincent’s hospital, they put me under a general anesthetic to re-position it and I had an overnight stay in hospital. The other most painful memory was a herniated L5 disc, a disc in my lower back. That was painful and it was chronic pain as it lasted several months. I worked with physiotherapists and got back to living pain free but the damaged disc is still problematic as far as flexibility goes and was visible on the CT scan I had in December of last year.

So, before these recent pain episodes, my pain scale of 1-10 would have been different. After the unnecessary root canal in May 2010, I had pain escalate to levels I hadn’t thought possible. As it was all new and incredibly frightening to feel like you had an electric current going right through your head, I had no coping skills at all. Even now when I try to describe the pain, I get emotional as it was what I would call a 100/10. I had my first ever full-blown panic attack when experiencing the pain while eating and asked Daniel to take me to emergency. They were good to me and gave me one tool that I’ve had to use a few times, and that was a bottle of Xylocaine to numb the trigger points in my mouth. The pain at that time would start off as a feeling of burning, then cutting along my lip, and ending up like a poker right through my head.

Last fall, in the context of my gastrointestinal problems, weight loss and increasing facial pain, I would say the pain was about 20/10. So, it wasn’t as ‘bad’ as it had been, but it was more than twice as bad as any pain I had experienced before. When I ended up in the hospital, the admitting doctor seemed to think it was appropriate to ask my husband about my pain. I have learned now that when you have this type of pain, you develop a relationship with it. You know it and you own it. Boy, was I angry when I read the report months later, with a comment that my husband had told the doctor my pain was much better than before. Yes, that was technically true but it didn’t mean that it was a normal pain that a person could live with. Daniel now knows to re-direct those questions to me as he is not an expert on my pain. You can’t tell what my pain is like by looking at me when I’m in pain.

After being discharged from the hospital with no hope of figuring things out, my pain got worse. And worse. By the time I saw Dr. Javer in March of this year, it was 50/10, even with botox and medications. It was truly miraculous to be out of pain after surgery and to have mild nerve firings that might rank somewhere in the 1/10 or less range. With the recurring nerve pain I’ve had in September and again the past couple of days, I can rank these on the 10 point scale. It still feels odd, it still disrupts me when I’m talking and eating, but it’s not the same in intensity. However, it is draining emotionally. At least I can lessen the impact with medications and do what I can to distract myself.

Well, maybe it was too good to be true to have a few days completely pain free. It was nice. Last night while watching Obama’s speech after being re-elected, I had a classic neurological pain breakthrough across my mid-face when I yawned. It happened again about a half hour later. I took a Lyrica and went to bed.

This morning, it has happened several times. The triggers have been touching my nose, pressing my lips together, and eating breakfast. I have taken another Lyrica.

The Canadian specialist on Trigeminal Neuralgia, Dr. Anthony Kaufmann, is based in Winnipeg. I took this from his website :

Multiple Sclerosis-Related Trigeminal Neuralgia

The symptoms and characteristics of multiple sclerosis (MS)-related TN are identical to those for typical TN. Two to four percent of patients with TN have evidence of multiple sclerosis and about 1% of patients suffering from multiple sclerosis develop TN. Those with MS-related TN tend to be younger when they experience their first attack of pain, and the pain progresses over a shorter amount of time than in those with typical TN. Furthermore, bilateral TN is more commonly seen in people with multiple sclerosis.

MS involves the formation of demyelinating plaques within the brain. When these areas of injury involve the trigeminal nerve system, TN may develop. MS-related TN is treated with the same medications used for typical TN (see Medications). Trigeminal rhizotomies are employed when medications fail to control the pain. For some individuals with MS and TN, neurovascular compression of the trigeminal nerve root may be a rare cause and demonstrated with special MRI or CT scans. In such cases, microvascular decompression surgery may be considered for treating the MS-related TN.

The worst part about this is it is so unpredictable. I can touch my nose now with no problem and press my lips together. Perhaps the next time I do it, it will trigger the pain. This pain is like electricity on my face from my mouth and along the side of my nose and into my cheek. So, it seems to be limited to the second branch of the trigeminal nerve right now, known as the maxillary branch or V2. (V for five as the trigeminal nerve is the fifth cranial nerve.)

The pain I experienced in May/June 2011, was somewhat different as it had the additional complication of the chronic sinus infection. It would start and then continue for several minutes, and include the area around my temple. And I had additonal sensations and things I called ‘smacks’ on my forehead.

My appointment at the MS clinic is in 5 weeks. I have drugs and a support group and a supportive husband. I hope I can hang on.

On May 30, 2011, I was preparing to go see a client downtown. I was eating lentil soup for lunch, when I had a huge neurological pain break through my face. I called to cancel.

A couple of days later, we headed off on a road trip to Calgary for our goddaughter’s graduation. While on the road, I started having nerve sensations around my temple in the shower. I knew that was the first branch of the trigeminal nerve. That meant I had pain on all three branches. I was freaking out as this one was new.

I had renewed problems on my lip and roof of my mouth. I didn’t have another full breakthrough until June 9. After that, I started to have them every day, either brushing my teeth or eating. The pain would throb through my face for 15 to 30 minutes at a time. I went to see my GP on June 13 for a new neurology referral. It was easy to get in to see her that day because the rest of the city was watching the Canucks in the playoffs.

She told me that it would be difficult to get in to see the neurologist I had requested as he had a year long waiting list. I wanted somebody who was an ‘expert’ in trigeminal neuralgia and he had been highly recommended to me. My GP told me to ask to be on the cancellation list if I could let them know that I could be there on short notice.

I waited. I had trouble eating and sleeping. I kept on working the best I could. I developed a stiff neck and a fever in mid-July. By the time the Folk Festival came around, I was out of pain but had numbness on my upper lip. By July 25, I was enjoying food again. And then I received a phone call asking if I could attend an appointment with the neurologist on July 28, as there had been a cancellation. I was doing well but was pleased that I would get a chance to have an expert opinion and perhaps some attempt at a differential diagnosis.

I arrived at his office early and waited. Then I heard somebody call “Jessica?” and again, “Jessica?” Damn, I thought, he doesn’t even have my name right. A minute later I heard, “Jennifer?” and went to meet him. I shook his hand and then he introduced me to a resident. “Dr ___ is here to learn about headaches.” I replied, “I don’t have headaches. I have trigeminal neuralgia.” At this point I was wondering what I had done asking for this neurologist. I told myself to be patient. It is a teaching hospital. I used to train students too. Eventually, this doctor will get the information he needs. I had come prepared with a written history to assist as well as the report written by the oral medicine specialist I had seen in May, 2010.

I spent 1.5 hours with the resident as he examined me and took my history. The neurologist joined us for the final 30 minutes of my two hour appointment. The resident provided a summary of my history. I had to interrupt several times to correct some details.

The neurologist told me that he would put in a request for an MRI on a non-urgent basis as I was managing and my symptoms did not strike him as typical trigeminal neuralgia and he doubted if the MRI would show anything. He did assure me that he could move the exam forward if necessary. And he also said that if surgery was indicated, he could make that happen quickly too. We booked a follow-up appointment for three months later.

The system here in BC seems to be that your GP gets the specialist reports and you don’t get them unless you request them. After the trauma of our interrupted trip to France, the struggle to get help with my GI problems and finding a new GP, I showed up for my appointment on October 26. While I was in the waiting room, I asked his office assistant if I could get a copy of the consult from July. I was sorely disappointed.

There were several parts of the history missing, including the introduction of the upper branch of the trigeminal nerve. There was no mention of the long bouts of pain in May and June. All that he seemed to use for his history was the report written by the oral medicine specialist who saw me once. Was I offended? Yes — it was obvious that the time I took to prepare a history was a complete waste of my time. There was no mention of the resident who examined me. So, if you read the report, you would have no idea that the neurologist didn’t examine me himself.

When I went into his office, I attempted to help him make corrections to the report. He listened a bit and made some changes but not a lot. When I read the note from the October meeting, he said “she presented me with a number of corrections to my March 2011 consultation report.” Funny, I hadn’t even been referred to him in March.

Now, I know we’re all human and we make mistakes. But these are medical records and they are supposed to be accurate. I laboured so hard to ensure the accuracy of my reports when I worked in healthcare and they carry no weight at all as I was just a “speech therapist.” Regardless, it was my professional responsibility to do my best. I would never have neglected to report on the fact that a student/intern/resident did the evaluation. It’s unethical. And as he sees so many patients, I am sure he by now doesn’t even remember that he didn’t do the evaluation. But I remember.

So, again, I was vulnerable. I needed to stay on good terms with this neurologist if I needed help. It’s a small city and a small medical community. He did give me some botox in my face the next month that helped a fair bit and I was grateful for that. I was losing weight as I was having so much pain and trouble eating as well as having gastrointestinal problems. He did make a couple of comments about the fact that I would benefit from taking the Lyrica pills as they would put a few pounds on me. He made lots of off-the-cuff comments like that and I found them so offensive.

Right now, knowing that I likely have MS, I can’t believe he didn’t start to look at things more seriously. He said he’d call my GP and my GI doc but I don’t think he ever did. Once I was out of his office, I was out of mind. My friend who is a pediatrician thought it could be MS. I assumed that a neurologist would at least consider it. I had spoken with the oral medicine doctor (now retired) about MS too in May 2010. He assured me that I would be in excellent hands at VGH. I’m still puzzled.