TN is back today... :-(

I've had several shocks/jolts in my face today and now aching teeth so my break yesterday was short but any is better than none.  My head pain/scalp tenderness is still gone.  Nerve block shots must still be working.  Fibromyalgia is good today, no back, hip, etc. pain.  I'll take it.

The good news from this is, if I can separate out the Trigeminal Neuralgia (TN) from the Occipital Neuralgia (ON), I should have a case FOR the Microvascular Decompression (MVD) surgery that will most likely cure the facial pain.  I'm going to hook up with a new neurologist from Wash U and see if I can get his buy in.  I'll keep you posted.

A Pain Free Day!!!!!! after Tremors Gallor

I'm having a pain-free day!  I forgot what this was like it has been so long.  It is well deserved for sure after my limb and body jerking reaction that I had from a new drug, Beclafen, that I was prescribed.  I took one dose, 10 mg, on Monday evening and within 30 minutes starting have uncontrollable tremors.  I didn't have any trouble breathing so I didn't go to the ER right away.  I called the doctor's office in the morning and they said to wait it out, but when the tremors were still there later in the afternoon, I called back and they said to go to the ER for observation.  So they took some blood work, it was all ok.  I was there for about two hours and the doctor came back in and told me that I would have to wait it out and that it might take a few days for the symptoms to go away.  I went home and took my regular bedtime meds including Skelaxin, which is the muscle relaxer that I normally take.  It calmed down my tremors.  I took it 3 times yesterday (prescribed dose) and the tremors have ceased.  Now that I'm typing this I'm realizing that I am pain free from everything (fibromyalgia, trigeminal neuralgia, and occipital neuralgia) most likely because of all the muscle relaxers I've taken over the past few days.  Hmmm. Maybe I need to take the muscle relaxers more regularly.  I used to just take them when I was in too much pain at night because they make me feel weak and tired.  Now that I've had a pain free day, I'd much rather be weak and tired than in pain.  Plus now that I'm not working, it's ok to be lacking in stamina.  When I was working, that would not be an option.

Speaking of not working, I'm still waiting on the decision from social security. We'll see.  I have an attorney lined up if I get denied.  I hear that most everyone is denied the first time they file.

Ouch!!!!

I had the nerve blocks today.  Eight shots in all; 4 in the back of my head and 4 above my eyes.  It was very painful.  I'm very uncomfortable tonight as the areas where the shots were hurt  and the stress of it all set off my back pain (fibromyalgia).  I cannot find a comfortable spot to lay my head to go to sleep.  I've already taken as much  meds as I can/should.  I'm just waiting for them all to kick in to put me out of my misery for a few hours. 

On the good side, the blocks have helped my chronic head/scalp pain.  It will be interesting to see how long the pain stays suppressed once the numbing agent wears off.  I go back to the pain doc on Oct. 17th.

I'm scheduled for the pain rehab program tomorrow.  Hopefully I'll be up to driving into the city tomorrow morning. 

Rehab Program for Pain Management

I went to my first of 10 Pain Rehab sessions.  It was interesting.  They had a class in the morning about neutrition, then we had an hour of working out at our own pace in the gym, then lunch, then a group thereapy session where we discussed how to get through daily activites that need to be done without overdoing it.  I met about 10 people who are also chronic pain suffers, although the origin of pain is different for most of us. No one else had face/head pain, but several had fibromyalgia.  It was nice to visit and talk about pain with others who know what you are going through and the topics over the course of the 10 weeks should provide a good base of information and coping skills.  This program is going to be vital to my success of having a halfway normal life again. 

I'm feeling very guilty about not working.  I was not approved through the Hartfor for LTD because my coverage didn't start until January and my symptoms started in December so they are saying it's a pre-existing condition.  I'ved filed for Social Security Disability and should hear by the end of the month if I'm approved.  I hear that almost everyone is denied at first and you have to appeal.  If that happens I think I'm going to have to try to go back to work. We won't be able to hold off another 14 to 18 months for an appeal.   If I do that, I'm going to have to work very closely with my pain doctor to make sure we're on top of it. 

On somedays I'm bored and feel half way ok and think I can work.  Other days I feel like I've been hit by a truck and my face hit the pavement.  Those mornins are usually after I had a very social day the day before (i.e. smiling, talking, squinting from the sun, etc.)  It makes it very hard to think clearly about what my real options are.  My husband doesn't want me to go back until I know I can handle working because he doesn't want me to have to quit again.  I don't want that either and I don't want to have to start the whole SS Disability process over again.  Who knows... I guess I'll know something in the next week or so then we'll see.

I go to get the Occipital nerve block on Tuesday.  My son is going to take me down there so my husband can get my daughter off to school.  I'm hoping it will give me some relief although I know it is temporary. I'll keep you posted.

Occipital Neuralgia?

I went to the pain doctor at Barnes last Thursday.  His assistant, maybe resident, came in and asked all the questions and then pressed on my head behind my ears.  I about hit the ceiling.  He left the room and came back in with the doctor.  The doctor did the same and said that the other doctor thinks I have Occipital Neuralgia and he agreed.  He said this is a nerve that resides between the scalp and the skull and radiates pain from the back of the head.  This can be treated with a nerve block and steriod injection(s).  I left the office feeling relieved that there might be an answer/resolution to my head pain.  So I went home and googled Occipital Neuralgia.  Here is the description as quoted by the National Institute of Neurological Disorders and stroke.

Occipital neuralgia is a distinct type of headache characterized by piercing, throbbing, or electric-shock-like chronic pain in the upper neck, back of the head, and behind the ears, usually on one side of the head. Typically, the pain of occipital neuralgia begins in the neck and then spreads upwards. Some individuals will also experience pain in the scalp, forehead, and behind the eyes. Their scalp may also be tender to the touch, and their eyes especially sensitive to light. The location of pain is related to the areas supplied by the greater and lesser occipital nerves, which run from the area where the spinal column meets the neck, up to the scalp at the back of the head. The pain is caused by irritation or injury to the nerves, which can be the result of trauma to the back of the head, pinching of the nerves by overly tight neck muscles, compression of the nerve as it leaves the spine due to osteoarthritis, or tumors or other types of lesions in the neck. Localized inflammation or infection, gout, diabetes, blood vessel inflammation (vasculitis), and frequent lengthy periods of keeping the head in a downward and forward position are also associated with occipital neuralgia. In many cases, however, no cause can be found. A positive response (relief from pain) after an anesthetic nerve block will confirm the diagnosis.

This pretty much describes what I've been going through. I believe that my occipital nerves were damaged while my neck was in an extended position for a long time while I was having a root canal on December 29th. 

I'll get the nerve block on August 21st.  I'll keep you posted.

In the meantime, I'm still going to go to the pain management rehab program so I can learn how to better deal with my fibromyalgia pain.

I think there may be a light at the end of the tunnel :)

More Specialists?

I submitted 25 pages worth of application to the Ryan Headache Center yesterday.  I got an appointment for November 20th.  I did ask to be put on a cancellation list.  This clinic was recommended by the Neurosurgeon and my primary care.  Glad there's no hurry.  It's not like I had to quit my job and the teaching I used to do and have no income coming in right now or anything.

Sorry, it's just very frustrating.

Anyway, I went ahead and kept my appointment for the Pain Management Rehab  program at Washington University today.  After the physical therapist went over my case with me, she basically said there was little physical therapy could do to help me but said I would probably benefit from the psychological portion of the rehab which helps chronic pain patients deal with their pain better.  She did mention a form of alternative therapy that I haven't heard of before.  It's called cranial sacral therapy.  I looked it up on the internet and there's a lot of negative press about it not having any proven benefits for its patients.  If anyone has heard of this type of therapy or tried it before, let me know.

In the meantime, I'm off the anti-convulsants because they make my head feel like it's going to explode and all I want to do is die, literally.  So I'm taking my regular fibromyalgia meds and I'll do the rehab once a week for the next 10 weeks. NO MORE ANTI-CONVULSANT DRUGS!!!!!

I did follow up with my chiropractor today regarding my x-rays.  My neck shows that it's straightening and there is some disc compression, but nothing extraordinary.  These problems could be contributing to my head pain.  She wants me to come back to get adjusted.  I'll have to be very careful with that so it doesn't set off my fibro again like it did last week. I did get a couplE minor exercises to do from the physical therapist that should help somewhat with my neck.  So I'll do those and see what happens.

I have a follow-up tomorrow with the Pain Management MD at Wash U.  I'm going to ask about pain/pressure point injections/therapy for the neck and see what he says. 

Thanks for listening...  I'll check back in a few days.

Results from the Chiropractor

The chiropractor took some scans that basically showed my neck off the charts for severity in nerve compression and muscle spasm categories.  She also took some x-rays through my mouth so she can get a good look at the top two vertebrae.  The results of that are not back yet.  She took some notes and asked me some questions but otherwise didn't have too much to say yet.  She did manipulation and electrical stem therapy.  I did feel better yesterday (Thursday) after the first treatement on Wednesday.  I went back yesterday (Friday).  The x-rays were not back yet.  She did another manipulation and therapy.  By last night I was in so much pain (head, face, neck, back), that I couldn't stand it.  I drugged myself with a sleep aid, muscle relaxer, and Lyrica and fell asleep.  I'm not in pain this morning but I think I'll skip the chiropractor appointment I set for this Monday.

I'm still debating on whether or not to go to the rehab at Barnes Hospital.  It starts this coming Wednesday.  I need to cancel on Monday if I'm not going.  I guess I'll think about it this weekend.