Friday, November 14, 2008

My Tooth Broke On The Affected Side

Just when I thought things couldn’t get worse, they did!!! The last tooth on the right side of my face, upper jaw, broke. I started feeling pain and I wasn’t able to eat, the next day I phoned the neurosurgeon to tell him and he said if the tooth is broken and sore its probably infected and he couldn’t do the MVD for me if there’s an infection as this could cause an infection in the brain during surgery. (That’s all I needed to hear) So I had to beg the dentist to see me, because it was such short notice and he was already fully booked, but he did see me and he knew all about TN, infact dentists have to know about TN because the trigeminal nerve endings go into all your teeth. He did a little scan which showed the there was a wisdom tooth above the broken tooth, impacting on the broken tooth because of the way its growing and that’s why the tooth was so brittle. He then said that I need to have my wisdom teeth plus my broken tooth removed surgically and for that I needed to go to an oral surgeon, to have it done in theatre. I was freaking out! I then phoned the Neurosurgeon (who I’m sure by then was sick of me calling for every little thing) he told me that the wisdom teeth have nothing to do with TN and that I should just have the broken tooth removed and go on antibiotics immediately because I only had 4 days left before the op, so I went back to the dentist and asked him just to remove the broken tooth and he said because its broken it will have to be removed surgically and he couldn’t do it. So the next day I ended up going to the Oral surgeon who said there was no need to take me into theatre and he could remove the tooth in the chair under local anesthetic. This went very well. To my surprise being poked with a needle in your gums does not trigger off TN pain at all.

Yeah, so it was quite a mission getting ready for surgery and everything went wrong at once.

Everything You Need To Know About Lyrica

The most common Lyrica side effects include:

• Dizziness
• Drowsiness
• Coordination problems
• Weight gain
• Dry mouth
• Infections
• Headaches
• Accidental injury
• Shakiness (tremors)

Some other common side effects of Lyrica include:

• Memory loss, problems concentrating, or slow thinking
• Constipation
• Speech problems
• Weakness
• Increased appetite
• Problems walking
• Twitching
• A spinning sensation (vertigo)
• Chest pain
• Gas
• Unexplained pleasant or happy feelings (euphoria)
• Vomiting
• Back pain
• Bladder control problems
• Flu-like symptoms (such as body aches and chills)
• Low blood sugar (hypoglycemia)
• Nervousness
• Fatigue
• Feeling abnormal or drunk
• Sinus infections
• Joint pain
• Muscle spasms.
• Signs of congestive heart failure, including difficulty breathing, water retention or swelling (especially in the hands, legs, or feet)
• Unusual bruising or bleeding
• An irregular heart rhythm (arrhythmia)
• Any vision changes, including blurred vision or double vision
• A need to take more Lyrica than prescribed, especially if you think you may be dependent or addicted to Lyrica
• Unexplained muscle pain or weakness, especially if accompanied by a fever and fatigue
• Anxiety or confusion
• Signs of an allergic reaction, including unexplained rash, hives, itching, and unexplained swelling
• Suicidal thinking

Rare side effects of Lyrica are also possible. Because these side effects are so uncommon, it can be difficult to tell whether they are actually caused by Lyrica or by factors unrelated to the medication.

These less common side effects include:

• Sensitivity to the sun
• A stiff neck
• Hangovers
• Canker sores
• Anemia
• Hiccups
• Hair loss
• Dry skin
• Dry eyes
• Taste changes
• Kidney stones
• Menstrual problems

Lyrica is an anti-epileptic drug, also called an anticonvulsant. It works by slowing down impulses in the brain that cause seizures. Lyrica also affects chemicals in the brain that send pain signals across the nervous system.

Important information about Lyrica

You may have thoughts about suicide while taking Lyrica. Your doctor will need to check you at regular visits. Do not miss any scheduled appointments.
Call your doctor at once if you have any new or worsening symptoms such as: mood or behavior changes, depression, anxiety, or if you feel agitated, hostile, restless, hyperactive (mentally or physically), or have thoughts about suicide or hurting yourself.
Do not change your dose of Lyrica without your doctor's advice. Tell your doctor if the medication does not seem to work as well in treating your condition.
If you stop taking Lyrica suddenly, you may become worse or you may have withdrawal symptoms. Withdrawal symptoms include headache, sleep problems, nausea, and diarrhea. Do not stop using Lyrica suddenly without first talking to your doctor. You may need to use less and less before you stop the medication completely. Carry an ID card or wear a medical alert bracelet stating that you are taking Lyrica, in case of emergency. Any doctor, dentist, or emergency medical care provider who treats you should know that you are taking a seizure medication.

Before taking Lyrica

You should not use Lyrica if you are allergic to pregabalin.
Before using Lyrica, tell your doctor if you are allergic to any drugs, or if you have:
• congestive heart failure;
• diabetes; or
• kidney disease.

If you have any of these conditions, you may need a dose adjustment or special tests to safely take Lyrica.
You may have thoughts about suicide while taking Lyrica. Tell your doctor if you have new or worsening depression or suicidal thoughts during the first several months of treatment, or whenever your dose is changed.
Your family or other caregivers should also be alert to changes in your mood or symptoms. Your doctor will need to check you at regular visits. Do not miss any scheduled appointments.
This medication may be harmful to an unborn baby. Tell your doctor if you are pregnant or plan to become pregnant during treatment.
If a man fathers a child while using this medication, the baby may have birth defects. Use a condom to prevent pregnancy during your treatment.
It is not known whether this medication passes into breast milk or if it could harm a nursing baby. Do not use Lyrica without telling your doctor if you are breast-feeding a baby. Do not give this medication to a child younger than 18 years old.

What Lyrica Did To Me!

I got the Lyrica and other new meds and started taking them, I was having attacks on a daily basis and so I realized that these new meds weren’t helping. I then realized that I needed the operation because nothing else had helped and they had just about tried everything possible on me.

I decided to go back home to visit all my family that didn’t live in the city with me, I knew I needed to spend time with all of them before such a major op, taking into consideration all the risks of the op, i.e. stroke, losing my hearing, eyesight, or losing my life. While I was there I saw everyone that I needed to, however I couldn’t sleep at night, I usually sleep with a heater next to my face but even that didn’t help, I walked around with a thick scarf around my head during the day even though its extremely humid there, just worried that a slight breeze would trigger off an attack.

It eventually got to a point where I did have an attack while being there with my family, I don’t remember much, I never do, but I do remember my brother trying to carry me to the car but had to put me down again because of all the weight I had put on after being on Neurontin for so long. The next day everyone around me was really down, I couldn’t understand why, I mean I always have attacks but I guess the people watching feel pain too, infact my little sister described the way I looked when I had the attack, she said my pupils were back, my jaw was almost dislocated to one side, my face was swollen and I looked dead because I couldn’t move an inch. I felt bad that they had to see me like that.

While I was there we managed to book an appointment with the neurosurgeon, and can you believe this, there are only 2 neurosurgeons in the whole of Southern Africa that do the Microvascular Decompression surgery. One of them was in Johannesburg where I live and the other was in the Mother City – Cape Town. My professor however recommended that I go to the one in Cape Town because he was very experienced in this procedure, and on the other hand the Neurosurgeon in Johannesburg hasn’t really done this procedure much. So of course I booked to go to the Neurosurgeon in Cape Town. Dr. Roger L Melvill, an internationally recognized Neurosurgeon.

After booking the Op I went back home to the city to prepare for my trip to the Cape.
I was relieved that I saw all my family and now it was time to face up to the scary realization of going through with surgery. To my surprise after getting back from the coast the sudden change of climate had brought on the flu, I spoke to the neurosurgeon who asked me to take antibiotics to clear it up before the op. So I decided to go to my GP, just before leaving I took my lunch time dosage of Lyrica, when I got to the GP just before getting out the car, I had a sudden attack which was very strange for me because usually I would have the sinus pain or sensitivity in my teeth or face, the dull ache and the pain, then the paralyzing pain, then the attack. So this was totally rare for me to not have any pain and then have an attack suddenly. I told my mum and sister who were in the car with me that something was wrong, just then a tear rolled down my right eye. Instead of going to my GP’s room we went straight into the emergency ward, while waiting there for a doctor to see me, I closed my eyes, it felt like my brain was being shook up, my ankles were swollen and my neck and hands were shaking like my nerves were going haywire. In my mind I prayed for it to stop. I opened my eyes and told my sister what happened, she then called my hubby to tell him and he immediately did some research on the side effects of lyrica, to his surprise I was having all the serious symptoms of an allergic reaction to the meds, we found out that I had just had a seizure and that the Lyrica was bringing on the attacks that’s why they were happening suddenly straight after I was taking them.

The doctor that saw me was actually my GP and he saw me through my Tegretol allergic reaction too. He gave me antihistamines to get the meds out my system and he gave me stuff to get my energy up aswell as antibiotics for my flu that I needed to clear before the op. He asked me to go off the Lyrica and back onto the Neurontin AGAIN! Boy had I had enough by then!

2nd and 3rd Set of Painblocks

In April 2008, 4 months after my first pain blocks I had a series of really bad attacks. I was back in hospital with my Professor giving me more pain blocks but this time under anesthetic and I was injected in the right side of my face. This gave me a pain free 2 weeks. After 2 weeks the pain was back but still no attacks. In July 2008, 3 months later I was back in hospital, this time the pain blocks were given to me in my face and in my neck in the Trigeminal Nerve. It was given to me Saturday midday and the very next day I was in pain again. The 1st set of pain blocks helped for 4 months, the 2nd set helped 2 weeks and the 3rd set helped 1 day. The Professor said that my body had gotten so used to it that it wasn’t helping anymore. I cried my eyes out in his consultation room that day, I told him that I wanted the surgery done for disease - microvascular decompression because there was no quality to my life anymore, I was missing so much work, I was either in pain or drugged, I couldn’t concentrate well, I couldn’t wake up in the morning for work, I was constantly depressed over my life situation, the medication was making me gain weight and lose hair like no bodies business. He sympathized with me but told me that this was a major op and that before I make that decision he wanted to try different medication on me, he said if it didn’t help me in 2 weeks then I could book for the op, but he begged me to try it. I was grateful for this because I could see that he was one of those Doctors that really wanted to know that they have done everything for their patients.

I got the 2 weeks supply of this new medication which is apparently the new and improved version of Neurontin, It’s called Lyrica. I got a 2 weeks supply of this along with Serequel and Geodan and some other meds that I wasn’t familiar with.

Thursday, October 23, 2008

Pain Blocks, Hyper-intesity's in the Brain & Anti-aging / Herbal Medication

After seeing my GP about my eye he recommended that I see a well known Professor and helped me book my first appointment. I am so grateful for that because this Professor helped me see more results than ever before. After seeing me he immediately booked me into hospital and did an MRI angiogram scan for me, which takes scans of the blood vessels in the brain, the nurse mentioned that there were several hyper-intensity’s in the brain, but the Professor said I shouldn’t worry about it, he then gave me what they call “pain blocks” which is steroids / alcohol that they inject into your trigeminal nerve. The first time I got the pain block was January 2008, and it was injected into my neck about 8 times without anesthetic. I’ve never heard such a scream come out my mouth like that before, infact my family that came to visit me that day were all the way down the hall when they heard me scream.

Painful but it did the trick in stopping the cycle of attacks. The professor told me that the attacks I had all of December and January before he did the pain blocks was ONE LONG ATTACK! He said that every time I went into an emergency ward for Morphine or Valium or Voltaren, it was basically a quick fix because all it did was numb the pain and as soon as the medication wore off the pain was full on again. He also mentioned the more attacks you have the more it damages your Trigeminal nerve. So he also upped the dosage of medication that I was taking and added Trepiline to my meds. I then did research of my own on what Hyper-intensity’s were, and found out that its white matter in the brain which should only appear in older people, it’s almost like I’m a young person with an old person’s brain.

I then went back to my GP for something common and he asked me how everything went with the Professor, which I explained, he then told me that he went to a seminar that brought out this anti-aging medication that helped boost brain function, helped with migraines aswell as reduces pain that I get during my menstrual cycle. I was quite excited because I know the TN pain was very bad before and during my menstrual cycle, and I felt like I needed a brain booster to help me cope at work while being on allot of chronic anti-convulsants. The doctor assured me that the meds were all herbal and that they would not cause any side effects and if it helped then we could cut down on my chronic meds, which sounded great to me. I tried the meds, which were something like 16 capsules a day, by the 3rd or 4th day it felt like my stomach was trying to come out my mouth, I was faint, weak, nauseous and had terrible stomach cramps, I immediately stopped taking the meds. I also found it strange that hyper-intensity’s in the brain was only found in people advanced in age, and there was a doctor trying out anti-aging medication on me. Strange but an important point to notice.

I later found out that herbal meds are basically placebo to anyone that has a neurological disease and this needs real meds and medical procedures.

Affected Right Eye

Seeing how the TN affected the right side of my face it also affected my right eye. Infact the bottom lid of my right eye is swollen and puffy, it feels like a gland and there’s a white layer inside the corner of that eye above the gland. My Neurologist recommended I see a Ophthalmologist but all she did was tell me that I had an eye infection and gave me eye ointment. This didn’t help, all it did was blur my vision for a while. In December 2007 when I had all the TN attacks, I decided to see a GP about my eye because it would get quite sore and swollen after and during the attacks. He gave me voltaren eye drops and some other eye drops that really helped, but I guess it was just too much work amongst all the other meds I had to remember to take. So I still have this bad eye, infact heres a pic of it that I took 2 months ago. If anyone has any information as to whether this is a result of the Neuralgia please let me know. My current Neurologist / Professor says it’s a result of the TN pain.

Wednesday, October 22, 2008

Important Things You Should Know if Youre on Tegretol

If you have any off the following symptoms please contact your doctor or it could be fatal!

• Hives;
• difficulty breathing;
• Swelling of your face, lips, tongue, or throat;
• mood or behavior changes;
• depression;
• anxiety;
• If you feel agitated, hostile, restless, hyperactive
(mentally or physically), or have thoughts about suicide or hurting yourself;
• fever, sore throat, and headache with a severe blistering, peeling,
and red skin rash;
• pale skin, easy bruising or bleeding, unusual weakness;
• white patches or sores inside your mouth or on your lips;
• feeling short of breath, swelling of your ankles or feet;
• nausea, stomach pain, loss of appetite, jaundice
(yellowing of the skin or eyes);
• Urinating less than usual;
• feeling dizzy, drowsy, or unsteady;
• vomiting, diarrhea, constipation, stomach pain;
• confusion, headache, blurred vision;
• ringing in your ears;
• dry mouth, swollen tongue; or
• Joint or muscle pain, leg cramps.

Tegretol can cause side effects that may impair your thinking or reactions. Be careful if you drive or do anything that requires you to be awake and alert. Avoid drinking alcohol. It can increase some of the side effects of Tegretol, and can also increase your risk of seizures. Avoid exposure to sunlight or artificial UV rays (sunlamps or tanning beds). Tegretol can make your skin more sensitive to sunlight and sunburn may result. Use a sunscreen (minimum SPF 15) and wear protective clothing if you must be out in the sun.

Patients of Asian ancestry may have a higher risk of developing a rare but serious skin reaction to Tegretol. Your doctor may recommend a blood test before you start the medication to determine your risk of this skin reaction.

What Tegretol Did to me!

Tegretol helped with the TN pain but caused other scary pain. My lips were feeling quite itchy at night and early morning, it seemed as though they were swelling during the night and by morning it would go down again. I then soon noticed that my skin was super sensitive, with tiny red spots all over. I just ignored it because I wasn’t having the attacks anymore and that was all that mattered at the time.

It was holiday time and the family had planned this big outing to a beautiful resort where its always hot and there’s a water theme park. They wanted to cancel because I had gotten so sick but I insisted that it was cool and went along. I sat in the sun all day because I couldn't’t get into the pools, afraid of the cold water against my face or someone accidentally knocking me in the face while being in the water or being splashed in the face scared me to death, the possibilities of an attack starting was endless! By the end of the day on the way home I was starving, my hubby bought us burgers, I tried opening my mouth to take a bite and my lips were so sore and burnt from being in the sun that I thought they were going to tear and bleed, I was so frustrated that I threw my burger on the floor in the car and my Hubby and Mum had thought that I had gone crazy. I don’t usually have the windows down in the car but It was so hot and I was so frustrated that I had the windows all the way down and the air blowing hard against my face, I figured that if the breeze causes TN pain then maybe allot of wind hard against the face would make me feel dead, my mind was racing, thinking about everything that happened that day and how everyone else was so happy and here I was thinking how quickly I’d be able to unbuckle my seat belt and jump out the moving car. Every time I thought about my mum in the back seat I stopped myself, but death seemed so inviting and all I could think about was how I could get there sooner...

We got home, I was fighting with Shaun and throwing stuff at him, absolutely not being myself, tried jumping out the window of our double story townhouse. I knew that I was losing it. I went to bed early and the next morning I went to the bathroom and noticed that my lips were yellow, I figured I must’ve eaten cheese crips, I didn’t remember whether I did or not but without giving it another thought I tried to wipe it off my lips, to my horror, I had taken off the whole top layer of my lips and the blood was rolling down my face. I ran to my mum who was sleeping in the guest room and cried that my lips were falling apart; she was scared I could see it in her eyes but she remained calm and got me a wet face towel to try wipe off some blood, but this just took of more pieces of my lips.

My husband then rushed me to a medical facility just up the road where my GP consulted. He saw to me that day and told me I had something called “Stevens Johnson syndrome” which was an allergic reaction to Tegretol. The suicidal thoughts, the super sensitive skin especially to the sun, the swollen lips were all side effects. It was amazing to think that the doctor that prescribed the meds didn't even give me a heads-up and warn me about staying out of the sun. He also didn't tell me that people of Asian decent are most likely to be affected by the worst of the side effects. & Hello! Its as clear as day that I'm Asian, but yeah as I said it was all about the money for him!

My GP asked me to immediately stop taking the tegretol and to go back onto the Neurontin but a higher dosage. He gave me antihistamines and creams to apply to my lips, he asked me to stay out of the sun and to try have allot of liquids seeing how I couldn't’t really move my lips to chew. The next few weeks were horrible. I had to have everything through a straw, which was still difficult because every time I moved my lips just a little it would crack and bleed, I still remember my little sister sitting at the table with me, we were just about to have something to eat and she was watching me, when I looked at her again she was in tears, just looking at me she felt me pain. I couldn't’t leave the house, and when I could eventually chew a little I couldn't’t eat anything with even a pinch of spice because my tongue was so raw it just burned like crazy.

My lips and tongue eventually came right however I still have the spots on my body a year later.

The Worst December Ever!

Everything was going okay; I'd have slight pain every now and then. It was just sensitivity in my teeth and would sometimes feel like sinus pains. In 2007 the pain went away for about 3 months so I stopped taking my meds. I got married in November 2007 and not so long after got laryngitis. The doctor told me before that viral infections do affect the nerves and that this was possibly how my neuralgia started in the first place because I’m quite prone to throat infections.

The first week of December 2007, just after I had laryngitis, I was in the car, the aircon was on, I was wearing an Alice band that rests right on the sensory nerve behind the ear, after reaching our destination I started feeling weak and drowsy. My husband suggested I eat something thinking that maybe I was hungry, after chewing for only a little while I had one of the worst attacks I’ve ever had. I was rushed to an emergency ward where I was lucky to find a doctor that actually knew what trigeminal neuralgia was. He gave me valium which helped allot. He also asked me to go back onto my Neurontin but to take a higher dosage. Which I did. The whole of the next day I was drugged and then the day after that I was in another emergency ward having another attack, then the next day I was drugged and after the meds ware off I was having another attack. This went on for over a month.

It was the worst December of my life. I found myself in emergency wards were nurses where wiping my tears of my face and causing more pain to me because of them touching my face because they didn’t know anything about trigeminal neuralgia. Doctors that saw to me told my husband that there was nothing wrong with me and I was just addicted to drugs, and this they probably thought again because they aren’t educated about the disease and because I was telling them what drugs to give me (because I had been through it so many times I knew what helped and what didn’t) so I guess it would seem like I was a drug addict, the doctor seeing me would often phone a neurologist and obviously I couldn’t talk so my husband would speak for me and so the neurologist would tell the doctor if her husband says she has trigeminal neuralgia give her morphine.

But after that they would just insert a drip without the slightest of care and then if it wasn’t inserted properly they'd pull it out and jab it into another vein. I was treated horribly almost everywhere that I went. But I took the horrible treatment because I needed the pain killers and they were the only ones that could give it to me, I remember sitting in the emergency room overhearing the doctor telling my husband that they aren’t going to give me anything because I’m just a drug addict, the pain was so intense that I would punch the wall over and over again to try distract myself from the pain in my face. But these meds would only help for a day if even and then the pain would come back and I’d have another attack.

My neurologist was on holiday and I had to beg the referral doctor to see me, he did and didn’t even look me in the eyes when speaking because it was like I was inconveniencing him, so he just gave me a prescription for tegretol and sent me home after I paid a fat bill for 5 minutes that wasn’t done with any care.

Friday, October 3, 2008

My First Neurologist Appointment

I had managed to do research about this "Trigeminal Neuralgia" that the doc spoke about and I had every symptom.I knew it was what I had so when I saw the neurologist I basically diagnosed myself, I had MRI's done and they didn't show any abnormalities. 90% of the time MRI's and Angiograms don't show anything touching the trigeminal nerve causing the illness because it is usually as minute as a strand of hair. She however had no doubt either that this is what I had. She then told me why my GP put me on antidepressants - this is because it helps calm the central nervous system down and thus minimizes pain. She tried a stronger antidepressant on me, which caused me to fall asleep at my desk at work, so she then tried Neurontin on me, only 200mg's a day which worked just fine.

Thursday, October 2, 2008

My Second Attack

About a year later, there I was sitting on the couch in front of the TV eating soft potato chips when I accidently chewed on the right side and immediately the pain like an electric shock cut through my face, I then tried to clean my teeth by flossing thinking that there might be food somewhere causing an irritation. That didn’t help infact it made it worse, and my face felt an icey burn, I then got into the Shower to warm up and that again made it worse. I could hardly talk or move my muscles in my face in anyway, I covered my face with a baby’s blanket and was again rushed to an emergency ward. The doctor that saw me that night asked me a few questions and asked me to just nod my head in reply.

An interesting question that he asked was “on a scale from 1 to 10 what is your pain?” and almost with a smirk on my face I said 11 to get the point across that I was in an enormous amount of pain. He took everything I said seriously and I was wondering how he could trust that I would give him an accurate rating, but I then learned that your brain tells you exactly the rating of pain your going through and you should always trust that it is correct. The doctor then looked at the nurse and said “I think she has trigeminal neuralgia” and when I looked at the nurse who had a horrified look on her face and said “but she’s so young”… the expressions on their faces almost scared me to death but no matter how much I tried to ignore what I was feeling all I could think about was the pain.

They gave me about 6 injections that night before the pain started to slowly fade, which was odd because when I had my first attack 1 injection immediately numbed my face. The doctor then sent me home and said that I would be completely drowsy. He then called me about 9:00pm from his home to ask how I was doing, which again surprised me because you don’t usually hear from doctors unless you’re making an attempt to talk to them. At that time the medication still hadn’t kicked in which surprised him and he asked me to come see him first thing in the morning. The medication really only kicked in about 1:00am because I went to the bathroom around that time and not so long after I blacked out from all the drugs.

I saw him the very next morning and he asked me allot of questions and then forwarded my file to a neurologist and asked me to see her, he also asked me to do some research on trigeminal neuralgia to see if anything seemed familiar in my case. He also sent me home with homeopathic meds, which tasted like tiny sugar balls, they of course did nothing for me and I was eating them like sweets. However I will be eternally grateful to this doctor for noticing and helping me figure out what was really wrong after so many check-ups with so many other doctors.

Wednesday, October 1, 2008

My First Attack

I started this blog to share my experience with anyone who would like to understand this disease better in order to help themselves or others. My journey through this disease has been challenging and unforgettable.

It all started when I was only 19, I was in bed with what felt like the most horrific toothache. My eyes were bloodshot and the pain lasted for almost the whole night. I was rushed to an emergency ward where i was told that I could have a tumor because my teeth were fine so it definitely wasn't a toothache. They gave me a voltaren injection which numbed my face immediately, but the pain was back 20 minutes later.

I still didn't believe them and went to the dentist were I had scans done and my teeth were fine. However on the scan the dentist noticed that the right side of my face was very light in comparison to the normal dark patches that were on the left, he asked me if I had sinus problems, which I didn't.

I was then referred to a cardiologist to check whether my heart was pumping enough blood to the brain, and my heart was fine.

My GP then put me on anti-depressants but didn't really tell me what was wrong or what the medication was or could help with. There wasn't really much pain after that although I did notice that chewing on the right was an absolute no-no and couldn't help thinking that it was a toothache and nothing else.