Tag Archives: Lyme disease

New Diagnosis: Trigeminal Neuralgia or Tic Douloureux

20 Jun

Trigeminal Neuralgia

I am writing this after suffering from one of the worst pains in the world for nearly 3 days straight. (See McGill Pain Scale Photo Below)

I remember growing up as a child hearing that my grandmother had tic douloureux and never really understood what it was. I remember my grandmother also tried to take her life a few times from being in so much pain and suffering. She had numerous surgeries that only made her worse and she had nerves severed in her face leaving half her face with no feeling. She passed away many years ago and before I was old enough to really get to spend time with her getting to know who she was.

Fast forward many years later and I now know first hand what tic douloureux is! My poor grandma had to suffer from this all those years?! I would say this was easily my top 3 worst pains ever and I’ve had at least 5 of the worst pains in the world on the scale which make broken bones look like child’s play. Pain in the 45-50 range on the McGill scale. My CRPS/RSD is the worst, Trigeminal Neuralgia, testicular torsion, Kidney stones … are my other top followed by back pains and severe chronic pain from illness.

The Night it Happened

It started I would say 4 days prior to the “non stop pain”. I’ve always had sensitive teeth but something was worse in my teeth and I felt like I had a Charlie horse under my chin. It was very sore. I started feeling a slight pain behind my eye in the eye socket. It slowly crept down my face each day to my upper jaw. 3 days ago I was watching tv around 6PM when I noticed the pain went from dull, uncomfortable pain to a sharp, stabbing pain. Then it started burning as if each nerve ending was going crazy. Having CRPS I know all about nerves and the pains they cause. I started to get scared something was wrong.

I went to bed and the pain increased. I’m pretty tolerant to pain but on my scale this was about a 7 which might be a 10 for most. I can handle a 7 as I’ve dealt with severe chronic pain most of my life. But then the feeling moved down my face to my upper jaw and cheek which started to feel like I was punched in the face. Then it slowly moved into my teeth and deep into my jaw bone. This is on my right side only by the way as it usually occurs on one side of the face. It started to hurt so bad I was grunting laying in bed and my teeth started to literally feel like they were going to explode. My cheek bone started to feel more like it was cracked open or hit with a sledge hammer, I’m not exaggerating it’s that bad!

As the night went on the pain went up to a 12 on my pain scale which to me is crying, screaming in pain, pain is so bad you are nearly passing out from the pain, tremors, can’t help yourself and you lose all control of anything else but just feel pain. I don’t think pain could get any worse than this because I would have passed out and not felt it. I sat up in bed crying and contemplating waking my parents so they could take me to the hospital. As you know I’ve had no help or any luck going to the hospital so I avoid it when I can and I have nearly every Med they have here at home. Saline is the only reason I go. The pain was so bad I couldn’t think, I just cliched my sheets rolling around trying not to scream and wake my parents and little niece.

I drank my water and I noticed that water helped cool the nerves and the pain lowered to maybe a 9 after each sip of water I had to hold in my mouth. Then the pain would go back up within 2 minutes of fresh water to a 12 (again the highest I think pain can get before passing out). My upper jaw bone, teeth, tongue, under my tongue, cheek, eye socket, chin, lower jaw were all in so much pain each part felt like I had anything from a hook in my mouth, teeth being drilled with no novocaine, I felt like I had facial surgery without any anesthetic or lidocaine, novocaine …. it was horrible. It’s giving me flashbacks now. It is pure torture and evil.

I tried ice packs and heat packs which only made it worse. I tried cold bottle water which didn’t work but semi cold to room temperature water was the only thing that helped. At this time I had taken my nightly 75mg of morphine, 40mg of Norco, Benadryl and Ibuprofen. The pain meds didn’t even touch the pain (meaning it didn’t lower the pain scale by even one point). That’s when I got scared nothing would help. I felt there was nothing I could do but drink the water. I had to keep water in my mouth every two minutes all night. I would say I had at least 20 empty water bottles near my bed that morning. I had to pee often from drinking all the water but had to take a water with me in the bathroom because if I didn’t the pain got so bad if I missed that 2 minute window to take a drink. It was like clockwork. Without the water I was nearly passing out in pain so I never got any sleep. Next morning I told my parents what was going on.

My mom took me to the ER. I sat there in so much pain. Walking made the pain worse. The ER did the usual “why are you on pain meds” routine instead of actually caring about what was hurting me. The doctor saw me maybe 3 minutes and diagnosed me with Trigeminal Neuralgia and they gave me a shot of Toradol and prescribed Elavil and sent me home. I didn’t feel any better or any relief of the pain and they said “you will be fine have a nice day go see your doctor when you can”. So the fact that morphine & Norco didn’t touch the pain yet they thought this shot would is beyond me. Luckily my neurologist got me in today and my primary prescribed me a better med for Trigeminal Neuralgia (TN). He gave me Oxcarbazepine.

My neurologist said “why didn’t the ER do a CT scan and why did they give you a medicine that doesn’t work well on TN? So he was agreeing that the ER is a joke. He also concurred with my primary that oxcarbazepine was the best medicine for TN and diagnosed me with TN as well. I’m already on Keppra for seizures so now I have two more epilepsy meds now. There are plenty of side effects which I already have anyways so it just makes them worse if anything but so far the med has given me relief after 3 days of the worst pain. Always talk to someone who has the same diagnoses as you and ask what helps them as I find most of the time the doctor doesn’t prescribe the best medicine for the diagnoses and you will be a lab rat trying 5-10 meds before one works. I had a friend tell me what med to ask for as Elavil doesn’t work well. My starting dosage for oxcarbazepine is 150mg twice a day but working up to 300mg twice a day. It makes you dizzy and you have to follow instructions carefully.

After the days of pain my face felt like I was in an accident or fight or that feeling after having teeth pulled and surgery. I have been so anxious for that pain to come back, it’s not something I want to feel ever again but I’m sure I will. It’s scary. This is something I will have for life and it’s far from over but I’m glad the pain has calmed enough for me to write this so I can help someone else wondering what it can be. Pain meds don’t help much so make sure if you have TN get to the doctor right away and try to get a what I’m on or ask for others.

Web MD

Tic douloureux or trigeminal neuralgia is a severe, stabbing pain to one side of the face. It stems from one or more branches of the nerve that supplies sensation to the face, the trigeminal nerve. It is considered one of the most painful conditions to affect people.

The pain usually lasts from a few seconds to a few minutes. It may be so intense that you wince involuntarily, hence the term tic. There is usually no pain or numbness between attacks and no dysfunction of the muscles of the face.

Most people feel the pain in their jaw, cheek, or lip on one side of the face only. Pain is usually triggered by a light touch of the face or mouth on the same side as the pain. The pain is so severe that people can become afraid to talk, eat, or move during periods of attacks.

Although a flurry of attacks can last for weeks or months, there are usually periods of months or even years that are symptom-free. The pain of tic douloureux is usually controlled with medications or surgery.

Tic douloureux is generally a disease of middle age or later life. Women are affected more often than men. People with multiple sclerosis are affected much more frequently than the general population.

Lyme, Fibromyalgia & More

6 Feb

Sorry I haven’t been active in a while. At the time I started this blog I was sharing my Lyme disease journey in real time and was only one small voice spreading awareness for many different illnesses and disabilities. Now that Lyme disease and other illnesses have finally hit main stream media you can find a lot of good info and stories on the internet. Lyme disease even has a commercial. We’ve come a long way but there is still much more to come. Getting rid of Wormser was one good move and the story above in the photo where chronic Lyme is now not just something used by patients.

Over the years since starting this blog, an old Facebook page I no longer use and a social media account I have tried to helped as many as I can by sharing my story. I would have never thought I would have saved around 6 lives from suicide over the years as well. People would reach out to me in dark times and I helped them through it until I knew mentally they were much better and most moved on with their lives and are happily married now. That’s a great feeling to know because of my support someone didn’t give up on life.

I’ve received countless private messages from strangers thanking me for helping them although I never knew I was. People that said one of my positive quotes reached them at the right time or my illness journey helped get them through theirs. That kind of thing really makes you feel good inside & I’m thankful & proud to all who reached out to me. I shed many tears over their letters. I remember a few started with “you don’t know me & I never comment to you or anyone but I just want to thank you for helping me get through these tough times”. Some I never heard from again just the one message but that one message is what keeps me doing what I do on social media. I’ve said I would be content even reaching or helping one person on this journey but I never thought I helped so many & it’s really a humbling experience & I wish I could meet them all & hug them.

There are pros & cons as I too have ran into evil people who could care less about anyone. I had a so called friend who said he supported me for 4 years. Then I come to find out behind my back he was posting videos mocking me, making fun of my surgery, illnesses, struggles & telling everyone I have “AIDS & cancer”. He tries to sabotage my social media page, he thinks anyone who is chronically ill is “better off dead” & we all just want sympathy not support. There are many others as well. You can say “I have cognitive issues so bare with me I might spell wrong or say something wrong” then you post something & they comment “you idiot you spelled that wrong you’re so pathetic”. If only they knew what we were going through daily but this generation seems to want to find errors to make everyone feel stupid or mock everyone. I’ve seen comments to someone with cancer “hurry and die”. So just do your best to ignore those kind of soulless people & keep being you & sharing your story regardless of a few rotten apples. You never know who you are inspiring.

I’m still waiting on two more opinions for my major neck surgery. My primary says “NO WAY DON’T DO IT, neuro issues, immunodeficiency issues risks are too high” while my neurologist says “get it done ASAP or risk death or being paralyzed from the neck down”. It’s a catch 22 medical issue so I’m damned if I do and damned if I don’t it’s only a matter of time/when it happens naturally or surgically. So that is heavy on my mind at night. Death and quadriplegic aren’t the best two options but there is a good chance I may clean up the spinal cord & get that one issue out of the way. It won’t make my quality of life much better but at least I don’t have to worry about each day waking up & not being able to walk or hitting my neck & risking paralyzes or death. Most people I know who had this surgery or issue are no longer alive so that’s what makes this hard for me on what to do.

My hypertension has been better since losartan daily and I, not passing out every time I stand up anymore. My Lyme is still active but I’m still doing the maintenance dose as needed of antibiotics. My CFS is acting up so I’m sleeping a good 14-16 hours a day. I still spend all my days and nights in bed or on the couch watching tv so nothing really changed since last post. But what has changed are the illnesses in the media like the two I will post below. For those that I haven’t talked to on here in a long time, I think of you all and wish you all the very best. Hang in there we can do this!

Thank You! Wormser is OUT!! 

10 Dec

Thank you to all who signed the petition and got Wormser out. This guy has been an extra pain to the Lyme community for years. As you know I’ve been on antibiotics for 6+ years and holistic, homeo, naturopath, herbal, western medicine, rife….etc and my last Lyme test came back “very active” and positive after all those years of antibiotics yet they claim 10 days of antibiotics and you should be “cured” although Lyme could possibly go into remission not cured. Most don’t get their Lyme into remission and have late stage Lyme or chronic Lyme disease and nothing can stop it or make us feel any better. It’s not “daily aches and pains” as “Doctor” Wormser says! I’m sure those of us suffering know the huge differences in daily pains and the hell we go through. 


Update: Heart Monitor Implant, Walking Pneumonia … 

3 Jun

Loop Recorder 

I’m getting my heart monitor known as a loop recorder procedure on June 14th. I had the 2 week Zio monitor recently but as soon as I took it off I had the episode. So this loop recorder will be implanted under my skin and record my heart for 3 years. We are hoping to catch any arythmia or abnormalities (or more like catch nothing). If there is no arythmia in the next 3 years my cardiologist says it’s more likely a neurological issue. The implant involves a shot of lidocaine to the chest area I believe and they cut a small incision and inject the loop recorder under the skin, near the heart. 

Walking Pneumnoia 

After suffering from a normal illness/lung infection for a week I suddenly had 104 fever and was hallucinating. I couldn’t talk, walk, see…. so my mom took me to a walk in prompt care where my doctor diagnosed me with what he thought was “bronchitis or walking pneumonia”. He gave me antibiotics but it was the family of abx that causes my restless leg syndrome to be much worse so I didn’t sleep for a week. He then switched me to Z-Pack (Zithromax) that was much better for my restless leg syndrome (RLS). I’m finally feeling a bit better getting the infection out of my lungs and no longer coughing or having low oxygen issues. For some reason at the doctors my Oxygen was going from 81%-86% which is crazy low but I think maybe the surgical mask I had on could have lowered my oxygen even worse? The walking pneumonia is getting better so back to my regular chronic illnesses and symptoms. The only difference I notice with the flu or pneumonia is the wet cough, colored phlegm, and higher fever than my usual daily fever. The other symptoms I already have daily so don’t really notice the change or notice when I am getting “normal people sick”. My temperature normally runs 94-95 degrees during the day and 100 degrees at night until usually 4-6am when I fall asleep. 

Neurologist Visit 

Saw my neurologist today. He wants to try and get me back on something for restless leg syndrome. I’ve tried many meds in the past like Lyrica but they made me gain weight and dizzier than usual. So I’m not sure which Med he’s giving me. He’s doing a sleep study on me soon with a pulseOx at home. I will also be getting more MRI updates on my C-Spine (neck), mid back and lumbar. He wants a brain scan but I just had one done two months ago. He’s trying to keep me from being “spastic”. So far the Keppra seems to be helping the myoclonic seizures. The heat of summer always makes me more exhausted than usual or dizzy so I just want to sleep all day. Lupus and the sun don’t mix so I don’t usually go out back I just stay on the couch or in bed. 
Hopefully things will start to get better. Like usual whe it rains it pours around our house. A lot of bad things going on and just trying to stay positive. Got to keep in mind it can be worse. Keep up the fight everyone! 

Modern Family Cast Does The Lyme Disease Challenge 

13 Apr


Update & Tips Over The Years 

18 Mar

Cardiologist Update 

The heart doctor said that my two week monitor didn’t catch the passing out episodes of any arrhythmia. The issues happened before and after the monitor was on. So she suggests I get a heart monitor implant that goes under the chest skin for 3 years. She said my heart was very slow at night sleeping and very high during he say when awake. She said my heart skips beats but that is “normal”. The 50mg of Losartan is keeping my tachycardia down to the 130-140/100-90 range so my BP is much better than it has been since I was 13 years old. I was worried that long with tachycardia my heart would be a mess but so far it’s not as bad as assumed. Cardio said I have some “mild leaky valves”. 

Next up is a nuclear stress test. Then a sonogram of the carotid arteries in my neck. And then I choose if I want the heart monitor “surgery” which looks very simple. I think I will do it since my episodes come and go. The episodes I’m talking about are the ones that are not POTS but the longer fainting episodes. With POTS I stand up and pass out, wake up on the floor and go sit back down. With the other episodes I start seeing tunnel vision, hear words backwards, can’t understand anyone, can’t move, I HAVE to lay down even if it’s a dirty bathroom floor and I eventually pass out for a while. The episodes last about 45 minutes. My skin turns paler white to gray, I’ve been told I look “dead” and one lady thought I had passed away calling 911. It’s happened about 5-6 times since last year. Cardio thinks it’s brain or heart related. 

It’s good to keep testing and rule things out. The more I test the more illnesses I’m diagnosed with. Don’t let anyone tell you nothing is wrong if you know your body and know you are suffering. 

 Some Tips I’ve noticed over the years:

  • IV Rocefin (ceftraxione) can cause your gallbladder issues and to have to be removed. Ask your doctor before you use it. 
  • Doxycycline and the sun don’t mix, I still have a scar on my forehead from being in the sun for a few minutes while on Doxy. 
  • Being too aggressive on antibiotics, using too many at once and high doses caused thrush, severe candida and c-diff. It took about 8 months to heal from all and I had to stop all antibiotics. I was on a ton of probiotics and took all precautions before started the aggressive treatment but it didn’t help. I had a flesh eating type of thing that was not only scary but very painful. 

Amazon Helping With Lyme Disease 

15 Mar

Thank you Amazon. I’m a Prime Member and I love Amazon but this really did make me smile.