Friday, December 10, 2010

Post-Traumatic Stress Disorder / Syndrome (PTSD)

Before going in for Microvascular Decompression Surgery (MVD), I was fine with knowing that I was going under the knife and I had seen the procedure on you tube, as bloody and gory as it was it didn’t make me flinch. I knew this would be painful after surgery, dealing with the healing process and I knew what major surgery I was in for and all the possible side effects and risks to the surgery… but knowing the facts is only a small part of preparing yourself for major surgery… the Doctors and surgeons that I had seen did not tell me how I would feel emotionally after surgery…

After MVD I couldn’t look in the mirror… even though I knew what I would look like to a certain extent seeing it through a mirror would only confirm for me what I was going through and in order to stay strong for me and everyone around me I would rather go on seeing every ordeal as though I was watching a movie and seeing this character go through all this and just staying positive that she could handle anything!

Days after my MVD while still in hospital I vaguely remember asking my sister if she would take me to the mirror to have a look… she asked me if I was sure I was ready for this and I said yes, even though I wasn’t… but I was curious to see what everyone else was seeing when they looked at me. I looked and immediately felt weak to my knee’s, I was about to pass out from my own reflection… and so my sister took me back to my bed to lie down… I looked like I had been in the battlefields of war, my head was shaved, but very untidily, with patches of uneven hair here and there, cuts and bruises on my head, extreme swelling of my head, face and ear to the right side, a big bandage down the back of my head… I immediately put it out of my mind… so much so that I had forgotten that moment, my sister recently reminded me of it.

Six months after MVD I had to go into theatre again to have my wisdoms removed as they were impacted and causing pressure on my jaw and teeth and this was triggering the Trigeminal Neuralgia (TN). Fear set in and I was angry… wish there was another way, wishing I could just leave the wisdoms where they were and wishing that surgery never existed! I was angry at the surgeons, wondering how they slept at night after violating human bodies in surgery, how could they cut you open, alter you, hurt you, scare you, cause you pain… and then you wake up feeling different and looking butchered, seemed like they were playing “God” they had no right to do this and why did I have to be asleep not knowing what they were to doing to me… after awakening wondering why there are bruises, aches and pain in certain places, what could have happened? What was going on with me? Why now? Why not straight after the brain surgery? Why only 6 months later after needing to go in for surgery again…?

Everyone was asking how I could be scared to remove my teeth when I was so brave for brain surgery, saying if I could handle that I could handle anything! How could I explain to them this twisted view I now had of surgery??? My oral surgeon even asked me what actually scared me about going into theatre again. “Was it being asleep and not knowing or was it the actual surgery that scared me?” “Both” I responded, how could I explain to this man who was trying to help me, how I really felt about his profession.

I went through with surgery, I had no choice and I still knew even though I was different I had to make the right choice for my health… the wisdom removal caused severe TN pain and I needed more pain block injections to calm my nerves down and this then caused my respiratory system to shut down and I was in ICU again with machines breathing for me (find more info on this in my previous post “Impacted Wisdom Teeth Removal – Pain-blocks Shut Down Respiratory System”) After waking up from this again nightmare of an experience I was in tears, my sister, mum and husband were there, praying and waiting for me to wake up, and when I did I so ungratefully asked them why I had to wake up, why didn’t they just leave me to go, I was so tired of all of this… of feeling this way! In and out of hospitals and doctors constantly working on me like I was meat to a butcher! I know now that by me not being strong emotionally since my post MVD that I was now causing emotional trauma to my family, which was the last thing I wanted to do, having to see me through all of this was bad enough I now had them thinking that I just wanted to die… and I didn’t want them to know that!

A month later I was being prepped for eye surgery, having a precancerous tumor removed from my right eye socket. (You can read more about my Solitude Fibrous Tumor and its re-occurrence in previous posts) I was becoming numb… feeling like I was in a war zone… moving from camp to camp! After this surgery too I didn’t look in the mirror for the duration of the healing process, kept wondering how everyone stomached looking at me, how my dear husband managed cleaning and dressing the eye everyday. Again I was pretending it wasn’t me, just watching a movie of a person who was brave and strong and doing the best she could to get through it all…

After all of this I eventually got the courage to research what was wrong with me emotionally… my thinking had been altered drastically and I knew if I researched it I would understand better, I found out, like many others I was dealing with Post-Traumatic Stress Disorder… first known to affect soldiers after war… the first term for this condition was actually known as having a “Soldiers Heart”

From Wikipedia, the free encyclopedia

Posttraumatic stress disorder (also known as post-traumatic stress disorder or PTSD) is a severe anxiety disorder that can develop after exposure to any event that results in psychological trauma. This event may involve the threat of death to oneself or to someone else, or to one's own or someone else's physical, sexual, or psychological integrity, overwhelming the individual's ability to cope. As an effect of psychological trauma, PTSD is less frequent and more enduring than the more commonly seen acute stress response. Diagnostic symptoms for PTSD include re-experiencing the original trauma(s) through flashbacks or nightmares, avoidance of stimuli associated with the trauma, and increased arousal – such as difficulty falling or staying asleep, anger, and hypervigilance. Formal diagnostic criteria require that the symptoms last more than one month and cause significant impairment in social, occupational, or other important areas of functioning.

Which explains why even now over 2 years after MVD I still have flashbacks when I get a silly paper cut or see blood, a wound or cut or bruise makes me queasy… makes me feel like I am back there again… I can’t look at it, it’s just unnatural!

I had surgery again in March this year, the tumor in my right eye grew back and that was removed again… I had never been so scared of anything before in my life and the reality of the tumor being the type that grows back after surgery and having to keep operating on that same eye made things worse… I recently had to have x-rays done of my neck and spine and this too made me emotional…

The reason why I am writing this article today is because yesterday I was back there… Back in the moment of feeling hurt! I got a flu sore on my lip and after my shower yesterday I wiped my face and the skin came off from the sore and my lip was bleeding and swollen. I looked in the mirror because I felt the sting and didn’t expect to see what I saw… It took me back to my allergic reaction to Tegretol, where my lips were yellow and I accidentally wiped them and the top layers of my lips came off and it just bled. Even though what happened yesterday was completely unrelated and it was a silly flu sore that didn’t cause me pain, emotionally when I looked in the mirror I saw the day I was bleeding from the Tegretol allergy in 2007… I cried yesterday wondering why I had to remember all of this, why I had to feel this way again… all common sense goes out the door and anger again starts to creep in…

Many people that have been for surgery refuse to have surgery again even if it’s a life or death situation, when you ask them why they can’t explain why they feel the way they do. Some doctors advise patients to see a counselor before major surgery, but most don’t. I’m hoping that anyone that reads this that may need surgery in the future or may know of someone in the situation will try to get counseling before surgery. Do not take it lightly as it changes you in ways you can’t imagine…

I find sanity in talking to my nephew who had major spinal surgery as a baby… he used to ask his mum why the doctors hurt him, why was he sleeping when they did that, why does he have such a bad scar… even though he knew surgery was for his own good, that they were fixing his back and trying to help him, these questions where still there and the feeling of being hurt and violated was there… even today he is scared to go for check-ups and scans. My colleague at work had corneal transplants and he too now refuses to go back for check-ups and says that he will never go back for another operation… when I asked why he couldn’t explain… but I could see PTSD was there…

My question today is, how long does PTSD last? Will I be this way forever? How do you get stronger?

Tuesday, October 5, 2010

Orbital Solitary Fibrous Tumor & Trigeminal Neuralgia, Any Relation?

I have been wondering if either my Trigeminal Neuralgia (TN) caused my Solitary Fibrous Tumor (SFT) or my SFT caused my TN? Doctors say that there isn’t any relation to the two
.
After my first two TN major pain attacks I noticed the bulge in my right eye, my neurologist at the time suggested I see an Ophthalmologist who charged me a fortune to tell me it was just an eye infection. So this tumor was there since my TN was there at the very beginning.

After finding out that it was a tumor growing in my eye socket on the then TN affected side of my face and having it removed my TN went into remission too. I then triggered it off again 10 months later by having my wisdoms removed… 2 months after that I had the tumor removed again and my TN went into remission again.

Thankfully the tumor has not re-occurred and neither has the TN.

This is all too much of a coincidence for me but doctors say they are not related in any way. If there is anyone out there that has had a similar experience I would love to look into this more

Pic of Solitary Fibrous Tumor of the Right Orbit

'December 08'

2nd Removal of Solitary Fibrous Tumor April 2010

I saw the surgeon and told him that I would do the Bone-flap operation and do what ever it took to remove this entire tumor while I could. He told me that the operation would be performed by him and another Eye surgeon who specialized in this kind of problem. He discussed my case with the other surgeon who suggested that they do not cut and do the bone flap they will rather go in under the eye ball and use something called a Burr (used to shape diamonds) to shave the socket to make more space to remove the tumor entirely, if during surgery they find that it is still difficult to remove the tumor this way they would then decide to do the bone flap as a last resort. I was happy with this decision and know that I was in the best hands and that they were so concerned with my case and I was treated like an individual not just another number… I knew they would do whatever it took to help me.

I went into surgery on the 18th April 2010… I was so concerned that the TN would start up after the op that I asked the surgeon if he could keep me in hospital even though the op was just a day procedure, if they could keep me just to monitor me during the night and give me medication if the pain was unbearable… I went into theatre and was introduced to the second surgeon who asked me if he could photograph my eye, to which I said yes hoping that anything I was going through could be used for the greater good of others. I woke up after they wheeled me out of theatre and my mum whispered in my ear that they didn’t cut and do the bone-flap, this was such a relief, I remember feeling pain though and they gave me meds and later that evening I woke up and ate and could go to the bathroom myself…

The next day when the surgeon looked at my eye there was no blood clots no bruising… just swelling that would soon go down. He explained that just by shaving the socket a little it loosened the tumor which they removed in one piece and they were confident that no tumor tissue was left behind… this was such a relief. The only thing I was struggling with was looking to my sides; I had double vision when looking to the extreme left or right. This he said will go away with time…

It did not trigger off the neuralgia and its been six months since that operation…
In fact today was my follow-up appointment & everything is still perfect, no sign of that tumor again :o)

Solitary Fibrous Tumor of the Right Orbit Returns

After having the tumor removed from my right eye socket in March 2009 I found that my Trigeminal Neuralgia finally seemed to be at peace… it went into remission and I never needed any of those dreadful meds. Six months had passed but I was too scared to poke around my eye to see if I could feel anything abnormal… I was scared to try see if the tumor was growing back so I just ignored it… in 2010 it was now visible to everyone that the bulge on the side of my eye had returned and that meant that the tumor had grown back as I had feared… I went to see the surgeon and he sent me for more scans that confirmed that the tumor was back, I assumed it would be the same op and we keep doing this for as long as we needed to, until it decided to stop growing, I knew leaving it was not an option as it was a pre-cancerous tumor.

This time however the doctor told me that I had to make a decision, to either have the same op that I did previously to remove the tumor which he didn’t suggest because this meant it could grow back again, and this way there was only a limited amount of space to work within and very difficult to see whether all of the tumor tissue was removed as there is so much tissue in the eye. He suggested that we cut a little on the skin, from the side off the eye towards the temple, but only a centimeter or so, cut the bone there and go into the socket from the side of the eye, this way they would have more space to work with and better visibility which was crucial to removing the tumor entirely and not leaving behind even the tiniest amount of tissue & then using a metal pin where they had to break the bone to get into the socket and stitching up again.

I knew this was the better option if I wanted a good chance of this tumor not growing back but I was so scared… I was going to be scared for life but that was the least of my concerns… there’s tiny little branches from the Trigeminal nerve that runs all around that area of the eye, and the surgeon would have to cut through those nerve endings to cut the bone and then put a metal pin in there… all of this felt like it was so unnecessary for me to under go the brain surgery in the first place because ever since then so much had happened to undo all that work to calm the nerves down…

I again consulted my Professor who called me and said that I should do the “bone-flap” because if I did the simple operation and the tumor grew back I could get cancer and then they would have to remove my entire eye ball and it would spread into my face and be unstoppable. He painted a very scary picture in my mind and even though that seemed harsh at the time it was what I needed to hear to push me to be brave and do what I could to get rid the tumor while I had the opportunity to. He said even if it affected the TN, that should be the last of my concerns and we would deal with that when we had to. I was concerned that if it triggered of the TN no one would be able to help me because the last time they gave me the pain-block injections in my nerve it caused my respiratory system to shut down… but the Professor made it clear that that was a small problem in comparison to the possibility of cancer… Spoke to the surgeon who did the my MVD & he too said the same thing… so the Bone-Flap operation was the way to go.

1st Solitary Fibrous Tumor Removal March 2009

I had a lump in my right eye for as long as the TN was around… from my first attacks and being diagnosed with TN. I did see an Opthalmologist who looked and said it was just an eye infection and gave me ointment… Even before the MVD my surgeon looked at my eye because it was bulging out so much and asked me to go get another opinion…

I couldn’t get an appointment with the eye specialist that I had researched so I had to see another specialist working with him… he looked at my eye and again said it nothing to worry about… & sent me to the optometrist working in their team… my eyesight on the affected eye was out of focus… as you can imagine if you push your finger against the side of you eye your vision will be affected. I explained for how long this bulge had been there and about my Trigeminal Neuralgia on the same side as the eye bulge. She asked me to bring her the MRI scans of my brain that was taken for the TN, because in these scans the affected eye is very clear. I dropped them off and she then took this to the specialist that I originally wanted to see as he is the best but he was booked months in advance. He had a look at my scans and called me to come in to see him ASAP. He sent me to have scans done of just my eye… this showed that there was a tumor in my eye socket that was growing and causing the bulge.

He suggested we operate to remove the tumor and have it tested to find out more… again I was in the war zone! I consulted my Professor and the surgeon who did my MVD they both said that the tumor removal will not affect the TN and that in no way do they think the tumor grew as a result of the TN. The tumor was removed in March 09’. The pathology report showed that this was a “Solitude Fibrous Tumor” One that keeps growing back and it is important to keep removing it surgically as it is a pre-cancerous tumor and leaving it will only result in it turning cancerous and growing onto the bone of the face and spreading…

The eye was swollen and bloody for a week or so… my dearest angel of a hubby had to clean and dress it daily and insert my ointment. He had to carry me and guide me through the house as trying to open the left eye meant that the right eye would try open as well so it was important to keep both eyes closes… soon it healed! The eye heals super fast! The Surgeon set up a follow up appointment for me in six months to check on in to see if it was growing back or not…

Impacted Wisdom Teeth Removal - Pain-blocks Shut down Respiratory System

February 2009... My wisdom's were impacted and putting pressure on my entire jaw and causing trigeminal neuralgia pain... I was sent to an Oral surgeon who said that I had to remove the wisdom's in theatre. I was worried that this operation would trigger off the TN attacks, I consulted my doctor who said that it shouldn't trigger it off but either way I had to remove them because they were already causing the nerves to go haywire.

I had them removed and after the operation as I suspected, the TN was back to torture me... I went to my Professor for pain-blocks (injections into the nerve to numb the pain and calm the nerves and stop the cycle of attacks), I couldn't wait for him to book me in and give me anesthetic before administering the pain-blocks so I asked the Professor to give them to me in his consulting rooms, he injected me on the left and gave me a minute to take it in... And then he injected me on the right... I started seeing spots and I knew I was about to black out...

Hours later I woke up not remembering what had happened or where I was... I had never been in this room before, the curtains the beds the nurses, nothing looked familiar; I thought I was dreaming... I could see a big clock on the wall... looking at the time but not being able to find any pieces of the day to put together in my mind... I was in my underwear and just a top, I could see a heart monitor... and I could hear the beeping of the machines around me... it was very bright in the room...curtains on either side of me I could only see straight ahead into the hall way... I had a pipe down my throat that was helping me breath, I started to panic not knowing were I was... was this all just a bad dream, I tried to breathe but the pipe that was in my throat was pumping air in at the same time... and I started to chock, but I couldn't get the nurses attention... I thought that was the end of me, I would chock and no one would see... my hands were tied to the bed... so I couldn't remove the pipes myself or press a button for help, but I was struggling as hard as I could to get free…

Next thing I looked up and there my husband walked in... I was pointing to my throat as best as I could with my arms tied to the sides of the bed... he immediately understood I was choking and called the nurse and then I saw my Professor who came over and pulled out the pipe that was so deep into my throat... was good to breathe again on my own without all the confusion but the pain in my throat from the pipe and the feeling of it being pulled out so fast made me throw up... I'm sure I saw blood... I was crying and asking what happened... they explained to me that after the second pain block in the right side of my neck my respiratory system shut down and they rushed me to ICU where they hooked me up to oxygen machines and so on... the Professor could not explain why the pain blocks did this to me... I had had them many times before the only thing that was different about this time was that 6 months prior I had been for Microvascular Decompression where the surgeon said that my Trigeminal nerves were already damaged, discolored and being choked by arachnoids (protective layers) the surgeon could only scrape the nerve in hopes that it would heal and regenerate again... could this be the reason why the pain block injection into that nerve caused my respiratory system to shut down... was it because it was damaged and also scraped... and the fluid that was injected into it now was not safe, the Professor could not answer my questions but one thing was clear... I could not get pain-block treatments anymore as it was now too dangerous... not knowing whether I would wake up from the comma the next time around... So all hope was lost... no more treatment... only medication which never helped at all... no answers... only pain.

Thursday, January 8, 2009

Picture After Microvascular Decompression


Heres a pic of me after surgery.

Wednesday, January 7, 2009

After Microvascular Decompression

I had the operation done on the 19th of August 2008. I wasn’t scared because I knew that I had made the right decision, I knew that I had tried every medication on the market and every procedure, nothing helped anymore and the operation was the last thing to try. It was either this or a very dark path for me...

My husband, mother & sister looked at me with painted smiles, they were scared, they wheeled me into theatre were they put me under anesthetic before doing anything for me, they then shaved my head and got me ready for surgery. If I could do this over, I would’ve shaved my head myself before the op, because its not done nicely when a nurse does it for you and you end up with little cuts here and there, and its shaved very untidyly. After about 2 and a half hours they were moving me out the operating room and into ICU, I opened my eyes to see my Surgeon looking at me and I asked him “was it a blood vessel??” He laughed because I’m sure he didn’t even expect me to know where I am or what’s going on & yet I was asking him about surgery already. He spoke to my family while I was in ICU, explained to them that my Trigeminal Nerve was extremely pale in color, white, and yet it’s supposed to be a dark yellow, he said that there was a thick layer of arachnoid (protective tissue) around the nerve, infact it was so thick that it was choking the nerve. He said besides that there was nothing touching the nerve so he removed the arachnoid and scrapped the nerve, so that it’s forced to heal and stitched me back up again.

He said that there hasn’t been another case like this, that there was no record of anything like this even internationally and so basically there were no answers for me, only assumptions.

It was very hard after the op, all the swelling an pain and inflammation in my head from the op made my head feel so heavy that I could hardly move, kept feeling like the stitches were going to pop out and my wound of the op was going to open.
I couldn’t hear properly because of the iodine in my ear from the op, and obviously with my one ear affected my balance was off, so if I tried to stand or walk my whole body would pull to one side, I couldn’t see properly, everything seemed double. Despite all of this I was ok. After the doc discharged me I had to stay in Cape Town for a while because I wasn’t allowed to fly straight away and it was better that I stayed put incase I noticed anything strange and needed my doctor. The surgeon said to me that even if I have a runny nose after MVD I needed to tell him as this could be a result of something going wrong from the op. So it’s of utmost importance that you take note of everything after MVD, no matter how silly it may seem, check it out with your surgeon.

Things You Didn’t Know About Microvascular Decompression

So I get to Cape Town, a place I’ve never been to before and it was for an operation, not really to see the place, but I was happy anyway, just glad that I was taking the chance to improve my life.

I saw the Neurosurgeon that morning, he must have spent and hour with my husband and I. Never before has a doctor given me that much time for consultation. He asked me questions and had a look at my MRI Angiogram scans through a magnifying glass, he asked me what my hobbies were & when I told him that I’m an artist he took out some paper and different color pens to explain things in my terms.

I was blown away, people travel from everywhere to see him because he is so brilliant at what he does. He’s actually come up with his own theory of how to improve MVD. He’s been doing this op for the last 15 to 17 years and is doing the op in such a way that it minimizes the risks.
He also does not use a Sponge or Teflon to separate the nerve from the blood vessel, and the reason for this that because the blood vessel always has blood pumping through it, its always moving and so if there’s sponge or Teflon in-between, this will move too as a result of the blood vessel always moving, also as we get older these vessels tend to droop and lose its elasticity thus moving away from the sponge or Teflon and still touching the Trigeminal nerve.
So instead he makes a sling out of some of your own brainstem and he uses a metal clamp to hold it up. He has been showing other surgeons internationally how to do it this way. So after everything we spoke about I knew I could put my trust in Dr R L Melvill. Infact I decided to have the operation done the very next day.

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.