As I said in the last post, I honestly just felt over medicated. I had reached out to Dr. Casey and explained to him how I felt horrible all the time again but it was different than my traditional shocks and stabs. This pain was more constant, achy, nagging and was on the inside as opposed to located on my face. Dr. Casey said it sounded like I was experiencing some residual pain in my pain matrix. Basically just pain that my brain “remembered” UGHHHH.
We stopped the Dilantin because at this point it was not doing any good and by now I had already weaned myself off the Gabapentin. He said this pain is harder to treat but it is possible. Some people are able to be treated with medication and others do require additional surgery. I was started on Ativan and Cymbalta to help my brain “cope” and hopefully forget the pain.
Let me just say this… CYMBALTA SUCKS ASSSSSSSSSSSSS!!!!!!!!!!!!!!!!!!!! In the first few days I felt great and then I started feeling blah again. Almost 2 weeks to the day I became suicidal. It was the worst possible feeling I’ve ever had. Not just thinking about doing it, my brain was trying to do it. I was sitting at work and all I could think about was how can I get out of my body fast enough?? I didn’t want to be in me any longer. I was scared, terrified. I remember thinking that I need help. If I didn’t get help, it would my last day. I left work and by the grace of God made it to my doctor’s office. I ran in the door with tears pouring out of my eyes. They immediately pulled me back and I screamed “I WANT TO DIE!!!” I was hysterical.
The staff at my doctor’s office is amazing. They were able to get me to calm down and talk me down and realize that it was all the medication. I knew that, well the sane part of me did, but my brain kept telling me otherwise. That day, I stopped Cymbalta immediately. Withdraws suck ass, even though it was only two weeks. I cannot imagine trying to come off that medication after a longer period of time. It took me a week before I finally started feeling normal again. I love that I have a NP that I can call or text and she is able to talk me through things. She helped me out over the next week, along with my friends and family to regain control over my brain again.
Mental health is serious stuff, whether it’s disease or medication related. You are never alone no matter how your “brain” makes you feel. Please if you feel hopeless reach out to someone. Call the suicide hotline (800) 273-8255. Call a friend or family member. If you are starting a medication that changes how your brain functions make sure that you have someone close to you that can watch for the slightest of changes in your personality or habits.
I knew that day I didn’t really want to die. I have my family, friends and my job that I love so much. I have people that depend on me. I didn’t want to leave them. The crazy part was in that moment, none of that mattered. I couldn’t think about anything other then escaping from my body. Thinking back now I am very lucky to have made it to my doctor’s office alive. I left there alive and my family and friends keep me alive every day. Trigeminal, Geniculate and Glossopharyngeal Neuralgia are hard enough to live with everyday and tax my mental health without the side effects of medication. I share this hoping that someone, somewhere can read this and know they are not alone. This disease is horrid and if I can help at least one person, then I understand that everything I deal with has a greater purpose.
Glossopharyngeal Neuralgia. Yep, that’s a mouthful and painful as hell. I had a small episode about a year ago. It came and went over the course of two days and then vanished. A couple months ago Dr. Casey diagnosed me with Glossopharyngeal Neuralgia after I started having the stabbing sensations again in my throat.
I was given a short dose of Dilantin to help calm the pain down. After my 3 day dosage, while eating dinner I started to feel really “weird”. There was no good way to describe the feeling. I knew what was happening but it had been YEARS since I had passed out. I laid down on the floor just waiting and about 30 seconds later it happened, and again, and again. My husband gave me a sternum rub every time I passed out. We spent several hours in the emergency room that night not sure if it was the medication or just another side effect. Besides my blood pressure being off the charts, all of the tests came back clear. I received some medication that helped to lower my blood pressure and helped bring some calmness back to my head. The doctor I saw was very compassionate and very thorough. I consider myself lucky knowing how people dealing with TN are usually treated. I was told that I needed a smarter doctor to make a better guess as to what happened that night. I followed up with Dr. Casey the next morning and on top of the rarity of glossopharyngeal neuralgia, only 10% of people suffer from vagoglossopharyngeal syncope. (yep, another mouthful)
Vagoglossopharyngeal syncope happens with your tenth cranial nerve is irritated along with the ninth cranial nerve. The high blood pressure with passing out and heart arrhythmia I’ve experienced over the past 11+ years finally had a name. FINALLY I had a doctor not telling me that I was NOT crazy for having “unexplainable” symptoms.
I was pretty symptom free for about a month following that and then it started up again. I lasted about 3 weeks dealing with lots of pain before I reached out to Dr. Casey once more for help. He slightly changed my medication and put me on a permanent dose of Dilantin.
Today I have been on the new medication for about a month. Do I feel better? No. Honestly, I feel overly medicated. I don’t feel great about 80% of the time. I’m not able to eat hardly anything anymore. I’ve tried to adjust and it’s not working for me. I have reached out to Dr. Casey again and waiting to see where we go from here.
One year! WOW!! I woke on June 7th, and at first it didn’t even hit me as I woke up even though I was talking about it the day before. While getting ready for work I had to sit down as this flood of emotions came over me. I was crying before I knew it, but it wasn’t because I was sad. I was thankful for everything I had overcome not only in the past year but the past 11!!!!
11 years ago on January 4th my life changed. I’ve experienced more pain than ANYONE should every have to. I’ve seen more doctors than I can even remember, been stuck by more needles than I would have ever liked, had more MRIs or CTs than advisable (yeah, I’m not ALLOWED to have anymore unless I’m practically dying). It took 2 years before I received my first accurate diagnosis and another year and a half before I would experience my first remission – August 13, 2009.
That August day my life changed again. The first month I was more or less waiting for my head to start hurting again, but it didn’t. I went crazy! I was working 3 jobs and coaching a high school dance team. I was finally able to go out and REALLY act my age. Life was great! I met my husband, we had our daughter and shortly after she was born the pain I had forgotten about reminded me how we used to be frenemies. It didn’t’ stick around long that time and would only show up every once in a while over the next 3 years.
February 13, 2013 (wow, a 13 again) I received my promotion at work to Property Manager. Hello instant stress! I was a first time manager and learning to run my asset like it was my own. I think it was around April that I decided to get Botox to help with my “migraines” I was having again. YES! 3 months of NO PAIN!!!!! Well once it came back again I decided to live with it again before I started what would become my final downfall into complete hell and “Bitch” face was born, except mine never rested.
All the painful details from the day Bitch came leading up to June 7, 2016 are documented in previous posts. I documented a good portion of the year since then. I also started an instagram (@theachybrain) to allow me to quickly add pictures of how I was feeling on days I didn’t want to write and I found myself posting there more frequently. I’m thankful to have this blog and those pictures to look back and remember just how strong I can be, especially on days I feel like giving up.
Am I 100% pain-free now, no but I’m a hell of a lot better than I ever was before! And I was told it was a possibility I would never be completely pain free again. I tend to have 2-3 good weeks now followed by 1-2 bad days. Stress and weather still seem to play a huge role in how I feel. Mother Nature and I haven’t come to an agreement yet for my little bubbly of continual sunshine so I try to limit my stress as much as possible. My face can accept touch now, the wind doesn’t always hurt it AND I have my hair back! Would I do all of this over again? IN A HEART BEAT! Dr. Casey SAVED my life.
So it’s been FOREVER since I have posted an update on going back to work and how I’ve been. My last update ended at 6weeks. I am now almost 2 months away from my 1 year anniversary. WOW!! Time has really gone by quickly
After my last post I became complete PAIN FREE and we were starting to lower my medication. I would say I was completely pain free for about 6 weeks before my lovely children decided to share their cold/sinus infections with me. That’s when I went down hill again. I want to say that was in August. We amped up my Tegretol and I walked around in a complete stupor for about 2 weeks before I adjusted to the massive increase. On the bright side it did seem to help. My pain leveled out and I was back to having really good days and the occasional bad day.
Around November/December I started experiencing excruciating burning on the left side of my face. At times it felt like my face was being burned off by acid, others it was just a blow torch on it. I emailed Dr. Casey the day that started and we decided to try a tri-cylic antidepressant that works well with that type of pain sensation. I started Imipramine and it took about a week before I could really tell a difference. About two weeks of being on it I was back to being completely PAIN FREE again! I would have about 4-5 pain free days followed by 1-2 days where the pain wasn’t as bad as before but enough for my frown lines to appear again.
Due to an issue with Dr. Casey being out of the country for 3 weeks in February, my prescription of the imipramine lapsed and I dealt with the pain again until I was able to speak with him. There was a mix up at his office on getting my script refilled. Dr. Casey quickly took care of it when he returned and deeply apologized. Up until about two weeks ago I was still in pretty regular pain again. I was at my work annual seminar when I was hit with a whopper of an attack. I seriously work for the BEST company and people. They took care of me and made sure that I was ok and resting. I decided that day I was going to get the daith piercing when I got back home. At this point I figured I have a 50/50 chase for it to work and if it doesn’t help then I have a cute new piercing.
I get asked all the time if I feel this has worked. 100% is the only way I can answer it. Even if I still experience pain it is no where near the GOD AWFUL pain it was before. I can live and function now. I would do it over again in a heartbeat. To me, I have had a successful MVD.
I’m sorry I have. It been keeping up with updating weekly. Getting back to work and my kids and husband’s schedule is just hard and most nights I am in bed usually before 8pm. 😴😴😴
I promise to post an actual update about all the happenings in my face post surgery either tonight or tomorrow!
Thank you for reading!
Wow Major update coming. I have gotten way off track updating the final weeks of my surg-cation from work and my actual return to work.
I’ll start here with weeks 4-6.
Week 4 – Just as crappy as week 3. I had lots of pain in my neck that I was able to control with ibuprofen. The underwater pressure feeling in my left ear FINALLY went away this week and I was able to completely hear again. My left ear is still completely numb and very painful where it meets my head. Being active for more than a couple hours just wears me out. As soon as I sit down I fall asleep. Dr. Casey said everything I was going through is completely normal at this time. He stressed about getting in light exercise to help the body’s recovery system going. I was supposed to walk a mile a day (in increments) and now I’m to do 30 minutes of light exercise every day.
Week 5 & 6 – It’s amazing what getting your body moving will do for you. I finally felt good enough to be outside in my flower beds that were completely overgrown with weeds (YIKES!). I was able to spend short spans of time outside pulling weeds. Working up a sweat and being more active than I had been was finally feeling good! AND my flower beds looked awesome again 🙂 . Driving… well after I hit my ouch after driving around the 2 week mark I took a big hiatus from it. Honestly, I was just scared. I started driving again a few days before I went back to work. Weeks 5 and 6 I felt amazing!!!! The only pain I experienced was a little headache in the morning that usually went away after some coffee and my medications.
I had asked Dr. Casey about when he would typically wean his patients off their medications and he said it was after they told him they were feeling great for 3-4 weeks. I have yet to have just that yet. Stupid pesky headaches.
Back to work! – I went back to work on July 20th. My first week back was a short week, I only worked Wednesday through Friday and that was ENOUGH! My body was so exhausted. I came straight home and slept until it was time to wake up again the next day. I had a lot of anxiety about going back to work. My senses are heightened since the surgery and lots of noise and ciaos can send me into a panic attack very quickly. My residents are super sweet. I had quite a few visitors in the first week back and even more in the second week. My second week back to work, I had to take a 1/2 day on Wednesday because my body just said no more! I came home and slept and felt so much better the next day. That day I also noticed my incision was more red and inflamed around the area. It ended up being nothing. I love that I’m able to stay in touch with Dr. Casey via email and he answers my questions so quickly. Week 3 back to work was my first full week back. I slept the whole weekend away. Week 4 was a little easier to get through the week. Usually by the end of the day I’m pretty tired, but I’m starting to get my Go Go Go back. 🙂 I just finished up my 5th week back to work and it involved travel. It was so much fun! I love the company I work for and my little region even more!!!
Complications – I have been very lucky to say that I have not had any major complications from the surgery. I experienced the underwater feeling/pressure in my ear which went away by week 4. I have had ghost/healing pains from time to time. It almost feels as if the nerve is saying “I’m still here, don’t forget about me!” The pain doesn’t really hurt. I’ve only had one ear zap that has made me squeak with the pain. The worst complication for me would be when my body started to reject a couple of the dissolvable sutures. I had a pain on my incision that I went to touch to help calm the pain and when I pulled my hand away I had blood on it. I took pictures over the next few days and emailed Dr. Casey. He reassured me that there wasn’t anything MAJOR wrong. I applied Neosporin to my incision and the raised bumps went away. The pokey sutures went away too.
So all in all the past few weeks have been pretty ok. I have a pesky headache just about every day still, but that is all it is. Coffee and Ibuprofen seem to take care of it pretty well. I really can’t complain too much about that. I still tire more easily than before. Everyone has to remind me that I just had brain surgery and to slow down. As much as I like to be wonder woman, I’m just not! I would call my surgery a success at this point and I would do it all over again in a heartbeat.
Today I am 3 weeks post op. Today has been probably one of the most painful since I’ve been home. I had been warned about how weeks 3 & 4 are probably the worst in recovery. Well I’m here to tell you that these people are correct. The stupid pain didn’t wait very long before it decided to say “Heyyyyyy, I’m here let’s play”. Probably the past 4-5 nights have been awful for me. I’ve been crying myself to sleep. I’m having a lot of sharp pain around my incision. Today I had a few zaps at the very top of my incision. My neck muscles are so tight and I can feel the pull all the way up to my forehead. UGH! Finding a position where I can fall asleep is a LOT of fun. HA! I usually end up wedged between two pillows since laying on my incision is painful.
Ghost pains – Healing Pains that run along trigeminal nerve but have no trigger. Today I felt my first ghost pain, in my chin. I had hoped that I wouldn’t have to experience these. I wanted my face to be completely free from all types of pain. Even though these are to be considered healing of the nerve, it’s never fun to have pain of any kind after going through this for the past year. Now granted this pain is more annoying than anything, it may register as a 1-2 on the pain scale compared to the off the charts pain from before.
My ear has been my biggest annoyance out of all of this. My left ear feels like I’m underwater constantly. In the past few days its has been popping and loudly! Every time I swallow it pops. Sometimes the echo of my voice is so loud that I have to plug my ear just to talk without hearing myself talk. Today I’ve also had intense pain inside my ear; I’m telling myself it’s ghost pain.
I’m hoping tomorrow is going to be a better day.