Wake up and get off the narcotics!

I've been doing some more research on alternative treatments to help with my Fibromyalgia pain since I can no longer take the SNRI's like Cymbalta or Savella.  I've been on a trial of low dose Naltrexone (4.5 mg) per day.  It acts by blocking opiod receptors and reducing cytokines that cause Fibromyalgia-like symptoms according to the President of Alabama Society of Rheumatic Diseases, David McLain, M.D. as quoted in the Fibromyalgia Network article Sublte Signs of Immune System Breakdown in Fibro.  The on-label use for Naltrexone is to assist people getting off of narcotic or alcohol addiction so people taking this drug cannot take narcotics or drink alcohol.  So for me, although not addicted, I needed to quit taking narcotic pain meds for seven days prior to taking the Naltrexone and haven't taken them since. 

After being on Naltrexone for one month, I did not feel any significant improvement in my pain symptoms, however, I have been more alert and feeling alive since I'm off of the narcotics.  I didn't realize what a zombie I was and how regularly I was using the narcotics until I went off of them.  It was enlightening but when I have my severe pain episodes it's really hard not to reach for the Oxycodone.  Instead I've been using ice or heat, taking a hot jacuzzi bath, or just resting until the pain subsides.  It's difficult to get through.  I still take OTC pain meds such as Ibuprofen and Acetaminophen.

I visited my doctor last week and discussed all of this with her.  She doubled the dose of the Naltrexone to see if a higher dose would be more beneficial with the pain.  Unfortunately, the side effects of the higher dose of medication kicked off my scalp sensitivity and the pain behind my ears and temples just like the SNRIs did.  I quit taking the Naltrexone for a few days and am now back on the 4.5mg dose until my doctor instructs me otherwise.  A medium dose of 6mg may be beneficial to try.  This dosage will need to be compounded at the pharmacy so I'll have to make a special trip to the hospital pharmacy to pick it up. 

If the Naltrexone 6mg is not an option or does not work, then my next suggestion to my doctor is Plaquenil which is also a drug that tempers immune activation and my help with pain.  I'll keep you posted.

A Little of This and a Little of That

I know I said I wasn't going to enter any more posts for this blog but I've had some time now since I saw the last neurologist and I'm doing some experimenting/self evaluation to try to find relief from some of my symptoms.  I have determined the following:

1. The pain behind my ears, in my temples, and causing general scalp tenderness seems to be lessened substantially when I go off of all drugs that have to do with Seratonin.  I was taking 90mg of Cymbalta, a Seratonin Norepinephrin Reuptake Inhibitor (SNRI) for Fibromyalgia.  I slowly reduced the dose and those symptoms mentioned above improved.  I stopped Cymbalta all together and those symptoms all but went away.  I believe these symptoms are now due to a condition called Seratonin Syndrome, which, by the way, can be FATAL.  While off of Cymbalta, my Fibromyalgia pain (primarily in my back) came back with a vengence, so I talked with my doctor about switching to Savella.  It is also an SNRI but has a threefold affect on Norepinephrine to Seratonin so I thought it might be able to address the Fibromyalgia without terribly affecting my head.  Unfortunately that is not the case.  The head pain is back and the Seratonin affect on the Fibromyalgia is not significant enough to help.  So now I am up tonight with head pain, back pain, and my trigeminal nerve is also acting up. I've taken Oxycodone, Tylenol, and Tizanidine (muscle relaxer), and Ambien.  Hopefully I'll be able to fall asleep soon and feel better in the morning.  I need to make an appointment with my primary care doctor and talk about what other options I have for treating Fibromyalgia without using Seratonin altering drugs.
2. Menopause/hormone imbalance.  I have been having hot flashes gallour and then am chilled episodes.  I keep telling my husband and daughter that my thermostat is broken.  I've been using Progesterone cream to help with the hot flashes, but it doesn't seem to do much. With the Progesterone cream, I do have a little more energy though and labido is returning.  My husband is happy about that :).   When the hot flashes occur it sets off the Trigeminal Nerve pain and the overall head tenderness and pain behind my ears.  Ice packs seem to help if it gets too bad.  I also need to ask my doctor to see if she can test my hormone levels and make any recommendations for treatment.  I've tried natural supplements for increasing Estrogen and that makes my head symptoms really bad, so that's why I tried the Progesterone.  I was reading that even if Estrogen levels are lowering, if there's no Progesterone (as is what happens when you stop ovulating), Estrogen dominance occurs causing the head aches, etc. so you need to supplement the Progesterone vs. the Estrogen.  I hope my cousin was right when she said hormone imbalance calms down around 56 or 57.  Only 4 or so years to go.
3. I'm starting some supplement therapy with a general whole food multivitamin for women (but it doesn't contain soy so it doesn't cause headaches), and another supplement that is supposed to be good for relieving inflamation.  I'm not sure if they are helping, but I know they are not hurting me, so I'm going to complete the 30 day supply and see if I feel any general health/well being improvements.
4. Physical fitness.  After the first of the year I'm going to start looking for a Tai Chi program.  I need to strengthen my core without setting off the Fibromyalgia everytime I work out.  From what I've read, Tai Chi is the best exercise program for that. 

So for the next year, I hope to strengthen my core muscles, increase my intake of nutrients via supplements and eating a more nutrient dense diet, go off of Seratonin altering drugs and find other options for treating my Fibromyalgia.  As for the head pain and trigeminal nerve pain there's not much I can do about that other than take opiod pain relievers and muscle relaxants.  I'm just praying that I can be more functional and a little happier to be around for my family's sake.  After all, who wants a Debbie Downer around all the time.  If there's anything I have learned from all this, it's to try to enjoy life through the pain because if I keep waiting for it to go away, I'm going to waste my life away and be a burden to my family.

Fibromyalgia Has Gone to my Head

I saw a second neuroogist today.  She was kind and listened and asked me why I came to her.  I said I wanted to know if there were any other tests to do to see if nerves were damaged or if there were any conditions left to rule out.  She said no.  My MRI of my brain from April looked good, in fact, not remarkable enough to warrant surgery of any kind.  My pain is too atypical and therefore there is nothing they can do for me since I cannot tollerate the anticonvulsant medications they use to treat this type of pain.  She mentioned that she believes the condition going on in my head is Fibromyalgia, so to me that means chronic, neverending, misery.  I'm very sad at that thought but guess I have to accept it.  I told my husband I'm done with doctors now.  I'm not going to chase this any more. I'll just take the drugs that I can tollerate and maybe eventually I'll get some relief on my own.  He thought that was a good idea.  I can't really afford to pay these doctors anyway, so I might as well just stick with my primary care physician and let her prescribe the pain maintenance meds. 

This will be the last post in this blog.  I guess the only thing I have left to say is that I'm too young to feel this damn old :(

So, What"s so Atypical?

From Dictionary.com:

a·typ·i·cal

/eɪˈtɪpɪkəl/ Show Spelled[ey-tip-i-kuhl] Show IPA

adjective

not typical; not conforming to the type; irregular; abnormal: atypical behavior; a flower atypical of the species.

I've been hearing this term a lot in the last seven months and everytime I think I understand what it means to me, the meaning escapes me.  Since I had a root canal on December 29th, 2011 everything typical about me became atypical.  I started having a swelling feeling in my face on the same side where the root canal was.  I was treated with anti-biotics which did not help.  I soon began having severe waves of heat come across my face and then feelings of  lighting sparks, bee stings, and aching teeth would follow.  Before long, any exertion placed on my face like excessive squinting, smiling, having conversations brought on the symptoms.  In March I had the tooth removed in case the root canal had placed the tooth root on a nerve causing the problems.  It was to no avail.  The pain just transfered to the tooth in front of the one that was removed.  It eventually calmed down, but the initial feelings of inflamation, pain, shocks, etc. have remained and have gotten considerably worse since then.  My last day of work due to this "Atypical" situation was March 20, 2012. 

I've been to the following professionals for evaluations and each time they send me on to someone else: Dentist, Endodontist, Chiropractor, Maxilofacial Specialist, Neurologist, Neurosurgeon, and pain management center (psychologist and MD).  They put me on heavy doses of anticonvulsant medications which have slightly helped calm the symptoms, however, they leave me very spacy and with a pounding headache.  I've just purchased two 1000 capsule bottles of Ibuprofen to take along with the anticonvulsants.

So, the neurologist and neurosurgeon say I have Atypical Facial Pain, which in some blogs is noted as a wastebasket diagnosis.  Some of the symptoms I have are definitely electric (related to nervous system) and an MRI shows that I have a blood vessle laying on the trigeminal nerve (TN) causing Trigeminal Neuralgia on that same side, but because I have other symtpoms other than those associated with TN, I am not a good candidate for surgery which is known to fully correct the issues 90% of the time. Did I mention, Trigeminal Neuralgia is noted online as being a suicide syndrome because it is impossible to live with?   Instead of trying the surgery that could relive most of my sypmtoms, the Neurosurgeon and my Primary Care have suggested that I go to a headach clinic for evaluation.  I'm also being asked to go through a 10 week rehab program once a week at Barns Hospital.  I'm just not sure what we are rehabbing because I don't have a specific diagnosis or treatement plan. 

So instead of immediately following that path, I'm going to take a break from modern western medicine for a while, and go to a new chiropractor tomorrow for an extensive evaluation.  My hopes are not up too high, but at least I will have someone else to talk to about this and get yet another opinion  on what to do about it.  I also want someone to work with a me as a whole person as I suffer from several other chronic pain conditions like fibromyalgia, IBS, and migraine headaches.

So from here, I'm going to post my progress from day to day, post results from different treatement options.  Track what works, what doesn't work, and what the side effects/consequenses of the tretments are, etc.

I think there are a lot more people out ther like me who are agonizing over facial pain which has stolen their joy, removed them from society (to a great degree), and who are looking for answers.

If anyone reading this blog has specific feedback or just want to post some encouraging information or status, please do.  I know there are other Trigeminal Neuralgia websites and blogs, but I thought I would start my own this evening on Blogger. 

Thanks to all who care, listen, support, and respond.  I'll post again tomorrow after my visit to the chiropractor.

Jody