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 :(

It's Been Quiet from the Doctor Front.

The radio frequency (rf) treatment was not approved by the insurance company, so I'm waiting until my appointment with the new neurologist on November 7th before I schedule any more treatments from the pain management center.  I think the rf treatment was a shot in the dark anyway and I don't really have many, if any, other options. 

In the meantime, I got my thyroid checked to see if the nodules have grown since last year, that's a negative.  One less thing for me to think about :)  Well woman visit went well, gotta go for an annual mamogram. 

My head pain is unchanged; still there daily and unrelenting at night, thank goodness for drugs that knock me out and ice packs to lay my head on. 

On a better note, my social security disability was approved so there's some financial help on the way. 

Sorry this sounds so down in the dumps. My primary care doctor added Wellbutrin and took away Nortriptaline to see if it helps with my mood.  Maybe I'll be in better spirits next time.

Physical Therapy for your Head?

I went to a physical therapist at Barnes last Friday, her name is Jean.  She's the head of the PT portion of the rehab program I'm going to.  I mentioned to her when I was there last Thursday that I really had a stiff neck and it was causing alot of occipital nerve pain.  I also mentioned that the physical therapist that did my initial evaluation said there wasn't anything they could do for me from a physical therapy perspective. I also told her that I was referred to someone outside of the Barnes clinic that was going to charge me $90 hr that I didn't have to spend right now.  Jean said that she could help me and scheduled me for a visit on Friday.

She did some mild stretches with my neck and scalp as well as did some pressure point work.  I let her know when it hurt but overall thought the therapy was helpful.  After a couple of days I can say that it did help with the neck stress, but I'm still having a lot of episodes of pain in my head.  Jean suggested that I start a headache journal on a daily basis so that we can review any progress.  I started one and hope it will help.  It has a diagram with a model of a head in several positions, so it lets me draw exactly where my pain is and then I write notes below to describe it.  I will try to keep this up and take it to the neurologist on November 7th. 

I'm scheduled for a radio frequency procedure on October 16th.  I still haven't found out if the insurance will cover it.  I need to check back with the doctor's office tomorrow.  Glad I have the whereabouts to stay on top of this stuff. 

A Bump from a Log? Post Concussion Syndrome?

Today I was watching snipets on the sports channel on athletes and how they became disabled due to concussions.  It made me think back to August of 2011 when I got a concussion.  I was cutting the grass around a Bradford Pear tree in our front yard.  It has low branches, which I knew about, but somehow was concentrating so hard on cutting the grass beneath the tree that I hit my head smack against a low lying thick branch.  It knocked me backward almost off of the lawn mower.  I had the mental whereabouts to flip the switch to stop the blades and moved the tractor out from under the branch so I could sit up, but that was one hell of a blow.  I got a good goose egg on my head above my left eye right at the hairline.  I don't believe I got sick to my stomach later, but I was dazed and confused for several days.  I also had a persistent headache for about 4-6 weeks.  I thought I had overcome that, but what if some of my problems with my head and nerves and pain are caused by post concussion syndrome?  That is a good question I think I should ask my neurologist when I see her on November 7th.

If I remember right, I believe my symtoms eventually went away and I was fine by November when we went on a Thanksgiving Week trip to Disney World.  At Disney I did get a vertigo episode in the evening at the hotel on the day that I went on the Dumbo Ride with Jamie.  I attributed it to my Menier's Disease, but I wonder if I just had enough of a jolt in my head on that ride to bring back the concussion symptoms.  Hmmm.  Who knows?

I can't help but think that this could be why I have nerve/head pain on my forehead and directly above my eyes.  It could also explain the Occipital Neuralgia because my head was forcefully jerked backward when I hit the tree. 

Maybe I'm going down a wrong line of thinking but I think I need to include that information with the neurologist along with a request to take a good look at the nerves throughout my head and look for any damage or compression.  If found, identify which, if any, can be surgically corrected.  Because I cannot tollerate any of the anti-seizure meds, surgery is really the only option I want the neurologist to provide for me.  If I can even get half of these symptoms corrected or reduced with surgery, I would feel so much better.  We'll see.

I've decided to start tracking the symptoms going on in my head on a daily basis using outlines of a head front, back, and sides with a comment section under each.  This will allow me to graphically show where the pain is and then explain it in better terms.

In the meantime, I'm continuing with the Pain Management Rehab.  I have a few more weeks.  I think it's a good program and enjoy visiting with people who know what I'm going through.

Food and Pain.

Pizza, cheesy bread, cinamon rolls, cupcakes.  I might have well just given myself an I.V. of pain direct into my veins.  All those things I ate in one sitting at a birthday party for my husband's great niece at a pizza buffet place.  WTF was I thinking!!!! I'm in so much pain now I can't stand it and I know better.  I am really mad at myself right now.  So you may ask, "What's the connection with what you had for dinner and pain?"  GLUTEN is the reason.

Gluten is a protein found in wheat, rye, barley, and malt.  People with chronic pain often have an intollerance for gluten.  When the wheat protein enters your small intestine, your body treats it like a foreign object and the reaction you have to that foreign object is, guess what, PAIN.  So everything on the menu tonight was full of wheat, therefore, gluten, so I just basically overdosed myself with pain.

Other things that you ingest that cause pain are from preservatives and additives put in processed foods.  In particular Monosodium Glutamate (MSG), Aspartame, and Cystene. MSG is found in most processed boxed and canned foods.  Aspartame is used in almost all diet sodas, Cystene is found in some processed foods.  So read the labels before you put that yummy processed food in your mouth.  The preservatives and additives are put there to make food last longer than it should and to make bland foods taste better.  So if you look at it that way, why would you want to eat it anyway. Unfortunately the industrialization of foods is killing us.  If I felt better I'd protest, but I don't, so I just need to be vigilent about not eating this stuff as well as gluten.

05/08/13
I want to add to this post that since I have had my gallbladder out on February 25th, I am still having severe pain in my back, on the left side, around my kidney after I eat anything of significance.  My doctor has put me on an elimination diet to see if I can find out exactly what foods are causing the attacks.  I'll create a new post in this blog with details.

Different Muscle Relaxer

I went to my pain doctor yesterday and we talked about meds and procedures.  He prescribed me a different muscle relaxer.  It's called Tizanidine to take every 6 hours as needed.  I took one last night and one this morning.  They did help me sleep/relax and I did not have any reactions to them. Here's the scoop on the rest of the conversation:

Meds: 

• He did not want to add Wellbutrin because of possible seretonin overload.  He said that I should talk to a neurologist about that.  I need to call on Monday and make an appointment.
• He recommended Naproxine for the anti-inflamatory, which I've already been taking.  He did mention to take it with meals at breakfast and dinner.  So I'll try that.

Procedures:

• Pulse Radio Frequency therapy is where they go into the occipital nerve with a needle then pulse radio frequency for a couple minutes into the nerve to get the activity of the nerve to scramble and reset.  He used to do this a lot at John's Hopkins medical center but he did mention that insurance is not likely to approve it because it is still considered "experimental".  I went ahead and set up an appointment to get it done and they will query insurance in the meantime to see if it's covered.
• Occipital Nerve Stimulator is a gadget they implant in your head that you can zap yourself with to reset the neurological rythym when you are in pain.  The problem with this procedure is that the gadget often moves because of the position where it's at in your head and the amount of movement you do with your head.
• Nerve block/steriod injections.  I can continue to have these done whenever I want to or feel that I need them.  Since I only had 7 days of about 80 percent relief after the first set of shots, I'm not sure I want to go through that again or often.  He said there's no limit on how often you can have the shots.

So, I'm hoping the muscle relaxers help relieve some of the tension in my head/neck and that I'll get some relief from those while I wait to find out if the Pulse Radio Frequency is covered. 

I'm also still waiting on approval for social security disability.  They are waiting on the notes from yesterday's appointment to make a decision.

In the meantime, I'm trying to save up my energy from the mornings so I can be more functional for my family in the evenings.  This is quite a balancing act.

Excrutiating Pain!!!!!

My pain is so intense this evening I'm beside myself.  It originates behind my ears and radiates to the front of my head and temples.  I took prescription strength Naproxin and arthritis strength Tylenol at 7:00pm.  No relief.  I managed to get through until time to put Jamie (my 7 year old daughter) to bed at 9:00pm, then took my standard bedtime meds of Skelaxin, Nortriptaline, and Ambien.  I'm beginning to feel like a junky.  But even an hour after taking those meds I'm still in pain and not asleep yet.  I moved my pain doctor appointment up to tomorrow at 3:30pm.  I am desparate to see him.  I studied the medicine information I got from the Fibromyalgia Network and compared it to what I have been going through.  I found a major connection that is quite scary but I may be onto something.  Here it goes:

Dopamine, or lack of neuropathic transmission of, causes Parkinson's Disease.  When I took Baclefen, I started having jerking movements as though I had Parkinson's.  Baclefen reduces dopamine transmission, so my normal levels of dopamine and/or transmission of dopamine must be very low for one dose of this medication to put me into tremors.  The anti-seasure medications also suppress dopamine and when I tried to take them, I literally felt like I just wanted to die.  Low levels of dopamine cause major depression.  My fear now is that maybe Parkinson's disease is on the horizon for me.  It tends to show itself in people over 50 unless it is genetic. I'll be 52 next month. 

So another drug, Wellbutrin, increases dopamine levels and also increases seratonin and norepinephrine levels which relieve pain and depression.  Cymbalta stops the destruction of seratonin and norepinephrine at the nerve junction so it allows your body to maintain the levels it has.  By adding Wellbutrin, levels of all three neurological chemicals are increased which should help with pain and depression.  I'll go over this tomorrow with the doctor to verify that my understanding is correct.

Right now, I am just praying that I'll be able to fall asleep soon because I don't feel the pain when I'm asleep and I usually feel better in the mornings.  It's pretty bad to just want to wait for bedtime all day long.  I'm trying to stay halfway functional in the evenings for my family but it's getting harder every day. 

Dental Work Sets Off Facial/Head Pain

Well, my dentist visit went pretty well.  I had a lot of periodontal (pockets).  Most level 5 with a couple of 7s.  Normal is 3 I think.  They said it was because of the medicine I'm taking is making my mouth dry so I don't have enought saliva to combat bacteria that causes gingivitis.  They cleaned my teeth and then did a deep cleaning with a laser.  That was amazing because it didn't hurt at all.  I had a little pain in my gums/teeth during the cleaning. 

The dentist said that all my teeth looked good, no need for concern anywhere.  I talked to him about my facial pain and the incident with the back tooth during the first root canal about six years ago.  He explained to me that the initial root canal endodontist breached the barrier at the end of the root and the mixture they use to clean out the root (basically bleach water) got into the facial tissue and permanently damaged the nerves in my face.  Once the nerves calmed down from that episode, I didn't really have any problems but when I had the subsequent root canal done, the damaged nerves became inflamed and have not calmed back down.  This theory makes sense to me for part of my facial pain problem.  I still think that several of the cranial nerves got compressed during the second root canal or it's just a coincidence that the compression caused by the artery was excaserbated at the same time as the root canal.  I'm being referred to a new neurologist at Wash U and I'm going to present my theories to her and see what she thinks.  I'm also going to ask her to look at the MRA I had last April and see if she can see other nerves compressed. I STILL think my best option is a microvascular decompression surgery, but now I think more nerves are compressed than just the trigeminal nerve. 

Don't I sound like a neurologist?  Wow, who would have thought.  Anyway, I'm glad I went to the dentist but my facial/head pain has gotten significantly worse since then.  I went to rehab today but was very uncomfortable.  Everytime I touched my face I had radiating pain out in every direction from where I touched it.  I came home and went to bed.  I fell asleep for about an hour, but that didn't help the pain, just gave me some rest.  I didn't put two+two together until today, but the night of the dental cleaning I was in such pain I was yelling at my daughter and my dogs.  I threatened to take the dogs to the pound the next day and told my daughter to quit getting on the bed, because everytime the bed moved it caused me pain.  My husband got her and made her stay in the other room and I shut the dogs out of my room and curled up under the covers in the dark to avoid contact with anyone.  I just wanted to die I was in so much misery.

That is what is hardest for me to cope with is the losses I have had in all the things that I loved to do.  Like working, teaching, taking care of my family, playing with my dogs.  I used to love all the attention I got from my daughter and my animals but now I can't tollerate any activity that is going to cause vibrations or movement of my face and head.  Including talkin, laughing, and smiling.  This disease has litterally stolen my joy and I have lost interest in just about everything and everyone.  In my rehab program, I'm going to mention that they should cover the stages of grief because all chronic pain suffers grieve the loss of their previous life and it's inevitable that they'll go through denial, anger, sadness, acceptance. 

I have a follow-up appointment with my pain doctor on Friday.  I want to check into other medications besides anti-convulsants that are used to manage pain.  I've got a list of them from the Fibrmyalgia Network and am going to get as informed as possible before I go.  I have definitely learned during this experience that I have to be my own advocate and be prepared to discuss medications, treatments, reactions, etc. when I go.  This blog is really helping because I can review it every so often and see what progress or digress has been made.

Dental toxins?

I've been doing some reading on the chronic toxic symptoms from silver tooth fillings that contain mercury.  Some research is very strong about the side effects, mainly neurological disorders.  The ADA does not support this.  Why would they.  If they did,they would have a wide-spread panic on their hands and countless law suites.  The toxin information I read also suggested that the fillings they use in root canals is also toxic.  So I looked in my mouth and counted.  I have 5 teeth with silver fillings and I have 5 teeth with root canals and crowns.  So a total of 10 teeth that could possibly be leaking toxins into my system causing neurological problems.

So do I go have those 10 teeth removed?  What would I replace them with.  I think I also read that the material used to make dentures is toxic as well as the newer "tooth colored" fillings being used these days.  I am baffled.  So I posted a question on the Trigeminal Neuralgia Support Group Facebook page and asked if anyone had had their fillings/teeth removed and did it help.  I got a mixed set of responses.  Some had and it helped.  Some had and it didn't help. One person said her dental surgeon said that there are so many nerves in the head that there is no way to really know if removing the teeth is going to help until its done.  I know I had one tooth pulled and the pain just transfered to the tooth in front of it, so that tells me to keep my teeth in my head and not go down the path of possible dental toxicity.  I just cant help but think that there is a connection though. 

The people on the support site have all stated that they wished there were more dentists and neurologist partnerships.  Because these are two separate practices neither one takes ownership of the issue of painful facial and head nerve pain and the patient ends up frustrated and on medications that have severe side effects and don't necessarily help. 

Oh well, I'll get off my soapbox now.  But to let everyone know, I am going to join the facialpain.org facial research organization and start supporting the medical research in this area so an effective cure can be found.  I'll keep you all posted once I decide how active I can be and what fundraisers I can chair.

For now, that's all what's been on my mind.  I needed to get it out so I can sleep.  Good night.

Getting into a pattern with pain and meds

I've noticed lately that I'm getting into a pattern of feeling pretty good in the morning then the pain rushes in between 3:30pm and 4:30pm every day.  So I think maybe that my Cymbalta, although it is a delayed release med, is dropping off in the late afternoon.  There is another drug similar to Cymbalta but it is given twice per day and is not a delayed release drug.  It's called Savella.  I'm going to contact my pain doctor and see about switching.  Taking that medicine twice per day might be what I need to get through the day.  I've also switched to taking prescription strength naproxin (Aleve) instead of ibuprofen.  It works better/longer at reducing the inflamation in my head without taking as much medicine.  I was taking 800 mg. of ibuprofen 2 to 3 times a day for a total of 12 pills.  The ibuprofen works better at onset but does not last as long. For instance, I was taking 800 mgs. of ibuprofen and it was wearing off after 4 hours and I couldn't take the next dose for 2 more hours.  With prescription naproxin, if I keep on top of it, it will last around 10 hours so if I take one in the morning when I get up, it relieves the inflamation for the day.  Then I take one before bed. I also tried Tramadol today for the pain when it set in this afternoon and it was pretty affective for keeping the pain from escalating.  So I think I will take it now instead of tylenol which doesn't help much.  Tramadol is a low level opiod (narcotic) pain med.  There is less chance of getting addicted to it than some of the other stronger narcotics like oxycodone and endocet.  So just to have it documented somewhere this is my medication list and when I take what.

Morning:
90 mg. of Cymbalta (anti-depressant/pain med)
25 mg. of Triemptarene (diuretic)
375 mg. of Naproxin (anti-inflamatory)
25 mg. of Prevacid (antiacid)

Afternoon:
50 mg. of Tramadol (narcotic pain med)

Bedtime:
30 mg. of Nortriptaline (antidepressant/pain med)
800 mg. of Skelaxin (muscle relaxer)
20 mg. of Ambien (sleeping pill)
375 mg. of Naproxin (anti-inflamatory)
7.5/325 mg of Endocet (narcotic pain med) Only if pain is too much that I can't get comfortable to sleep.

This combination seems to be the best for me at this time.  I'll see what the doctor says about switching the Cymbalta for the Savella.

Pain is Returning :-(

Over the past few days the pain in my head from the Occipital Neuralgia is coming back.  I'm realizing how effective the nerve blocks were now.  I'm feeling very depressed over this.  The doctor said the nerve blocks last anywhere from two weeks to six months.  I was hoping they would last longer.  I guess I'm a two-weeker :-(  They were awful painful to have to go through every couple weeks.  I don't even know how often they will give them.  I'm sure there's a limit.  I have an appointment on October 17th with the pain doctor for a follow-up appointment, but I'll think about moving it up.  I've been reading on the Trigeminal Neuralgia website that if you can get through a couple weeks of the bad side effects of the anti-convulsant drugs that they subside and the drugs help.  I may need to do that.  Ugh... There's no positive news here.

In other bad news, we hit a really big whole crossing a railroad track on Sunday and I flew up in my seat and back down hard.  My back has been hurting ever since.  I've been icing it and taking Ibuprofen which is helping.  I'm going to my chiropractor tomorrow.  I hope I didn't fracture any vertebrae.  I've got enough going on right now.  I don't need to add this to my list of chronic conditions.   We'll see, I'll keep you posted.

Sorry for all the negativity.  It's just been a really bad last few days.  Maybe tomorrow will be better.

What came first?

You've probably heard the question, "What came first, the chicken or the egg?"  Well another comparison for people with chronic pain is, "What came first, the pain or the depression?"  We talked about this in the pain management rehab this week.  For some they thought the pain came first, for others, including myself, I thought the depression came first. 

I have had a history of depression since I was a child.  Of course, back then, I don't think it was ever something that was openly discussed.  I remember when I was a teenager I ran away from home (for a whole day) and then my mom said maybe I needed to go to a counselor.  I proceeded to tell her I wasn't going to a f''n shrink and went to my room.  Hind sight is 20/20 though and that is exactly what I needed along with some anti-depressant meds. I got severly depressed in my late 20's when my husband (at the time) left me for someone else.  Our son was only 6 months old when I was asked for a divorce.  I tried everything to keep the marriage together, but after another six months he was gone.  The depression and stress was so significant I couldn't swallow.  I lost a lot of weight and looked anorexic.  My mom and dad came and brought me and my son to their house for a week.  I took off work.  I did go to my doctor and got some anti-depressant meds and went to counseling.

The counselor used a method known as "Cognitive Therapy".  It's basically recognizing your inner thoughts and learning to change them.  So, for instance, an overly negative person thinks negative thoughts most of the time and discounts any positive experiences or compliments. This is what I did.  The cognitive therapy was very helpful and I was able to basically rewire my self-talk.  They talked specifically about cognitive therapy in rehab as a means to help cope with chronic pain and depression.  I can see that this would be useful because I have noticed that I have a lot of guilty thoughts and feelings because of my chronic pain.  These lead to depression and the cycle begins. 

We also talked about medications for depression and pain.  I take 90mg of Cymbalta in the morning and 30mg of Nortryptaline at bedtime.  When I first started taking Cymbalta it was like turning my pain switch off, but that was several years ago and it's not as effective any more.  My pain doc says I'm taking as much as recommened so I might talk with him next visit about adding Welbutrin.  My sister takes that and is happy with the pain reducing effects it has.  It's crazy.  I never thought I would know as much as I do about pharmaceuticals.  They are a blessing though.  I can't image what it would be like without them.

So "What came first, pain or depression?"  I think it's as complicated as the chicken or the egg.  No straight forward black or white answer, just an understanding that they co-exist and both need to be treated.

Improvement, Causes, and Life in General

Improvement
I have had a steady decrease in scalp/head inflamation over the past couple of days.  I guess the steriod is doing its job.  So I was pretty functional today.  I swept the floors and did some laundry. Other than a mild headache late in the day, I felt better than I have for a while.  I did not get any TN shocks today.  So I'm calling it a good day.

Causes
I was at a birthday party for my 90 year old Aunt last Sunday and I was talking with one of my cousins about this pain that I have been having.  She mentioned that she thinks it's primarily caused by menopause.  She told me that she suffered with extreme nerve related pain for about 6 to 7 years when she was going through menopause.  She said the pain calmed down when she was around 56/57.  I'm 52 now and am post menapausal so if this is true, I've got a few more years of this to deal with.  I have read somewhere that lowering levels of estrogen effects nerve endings and can cause acute nerve pain.  So I'm thinkin that I am probably case in point because the fibromyalgia has caused my nerves to already be overloaded with pain signals .  I was kinda happy to think that this could eventually work itself out, but then depressed to think it might be another 5 or 6 years.  I would probably loose touch with my IT career in that timeframe, but I could probably get back to teaching part-time.  For now, I'm trying not to worry too much about the future because when I do, I start feeling guilty about not working and then that just makes matters worse.

Life in General
Getting these neurological problems with my head has made me rethink my future.  Before I was always trying to prove myself to myself and others.  I always felt like I had to one-up whatever I did last.  I longed for recognition from my supervisors, co-workers, family, and friends.  Now I realize that isn't necessary.  I've always done exceptional work, I've studied hard and do well at teaching others. I'm one of the most requested professors at the University.  So I'm moving on from my my proving myself mode and moving to a new taking care of myself and counting my blessings mode.

Taking care of myself is going to benefit both myself and my family.  In order to do that, I need to learn how to cope with the pain better. These episodes of pain can drain me to the bottom of the barrel and at times, I admit, I haven't cared if my life was over, I just wanted to end the pain.  I didn't want to live if I was going to be brining my family down all the time by either complaining or externally suffering from pain.  I didn't want my little girl to see me in pain all the time.  I didn't want to miss out of outings to visit with family or friends because I'm in pain.  I didn't want to miss out on being there for my husband because the drugs have me too spacy/sleepy all the time.

This type of pain steals your joy because it escalates when you interact with others. So lately I've been hiding in my home, trying not to get too worked up, doing relaxation techniques to calm down my face at night so I can sleep, and praying it doesn't come back worse in the morning. Going to the weekly pain management rehab is important because I am learning other coping techniques there.  I'm also learning alot from the Facebook Trigeminal Neuralgia Support Group. 

I need to start looking at my life in chunks of time now vs. days.  I'm no longer pain free for a day, but I have pain free periods throughout the day.  So I do a little work each day. I rest a little each day.  I try to eat healthy foods and take my prescribed medications along with Ibuprofen.  I try to count my blessing everday and I do pray for God to intervene and take my pain away when it's more than I think I can handle. I also pray for those I love that they have blessings in there lives and that they are given the gift to deal with me. 

When, at times, I'm feeling out of control and frustrated, I keep in mind what my husband has taught me.  He says "Worry is worthless, Prayer is priceless." So I get off my pitty pot and flush it and start couning my blessings again.  Oh yeah, and occasionally I reach for the narcotic pain meds to break the cycle of pain or take me out of it for a while so I can regroup. 

So little by little I do think I'm better, but doubt that I'll ever be well. I have too many separate nervous system disorders for them all to misteriously go away.  So I'll just take the bits and pieces of peace as they come my may throughout the day.

With accepting that I'm diabled over this I ponder the question, "What's Next". This is where I try to find ways to add value to society with whatever stamina I have left on any given day.  There are endless possibilites, I just need to find the right (ones). 

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.

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