Neuralgia discussions

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Permalink Reply by Ellen S on July 3, 2008 at 1:34pm

There is info on this link about a new way to fight Neuralgias caused by dormant viruses that cause cold sores and chicken pox, and potentially the neuralgias caused by them.

A new drug activates the dormant viruses so they can be killed by drugs like Acyclovir. This is an entirely different and new way of dealing with cold sore and chicken pox viruses than ever before.

Soon, I hope it'll be true that "...you can run, but you can't hide!"

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Permalink Reply by Ellen S on July 3, 2008 at 3:55pm

This LINK gives another view on the cranial nerves and their influence on headache disorders. It also details more about decompression surgery.

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Permalink Reply by Robin Wood on July 4, 2008 at 8:53pm

Thank You Ellen :)

I had never heard of LPR before, you poor thing it sounds horrible. Do they repair the nerve in the same fashion as the trigeminal ??? Does LPR deterate the nerve lining ???

In laymans terms bascially what they do with the Micro Decompression Surgrey, MDS is go in and rap the nerve with teflon tape where the mylin sheath has detoriated. There is also the GAMA Knife Surgery, which is considered a destructive technique, that's where they go in and cut the nerve. Not only is the MDS not success in all people, not all people are a candiate for it.

Trigeminal Neuralgia, also called tic douloureux, it is a chronic pain condition that affects the trigeminal nerve, one of the largest nerves in the head. The trigeminal nerve is the 5th cranial nerve and is a sensory nerve. This disorder is known to cause extreme, excrusiating, sporadic, sudden burning or shock-like face pain that lasts anywhere from a few seconds to as long as 2 minutes per episode. The intensity of pain may be physically and mentally incapacitating. It's other name as Ellen said is the "suicide disease". Trigeminal Neuralgia is not fatal, but it is universally considered to be the most painful affliction known to medical practice.

Doctors ask; on a scale of 1 - 10 describe Your pain, take it from me, one who knows frist hand .... 10 is for broken bones and sissys, it doesn't even begin to describe the intensity of the pain associated with TN when the nerve is firing in every single one of your teeth and thru out Your entire face, we're talking more like a 1,000. There are times when the pain is so intense that it takes all You have just to keep breathing, to take that next breath and as much as You want to cry, You can't as crying just makes it all that much more severe.

The trigeminal nerve is one of 12 pairs of cranial nerves that originate at the base of the brain. The nerve has three branches that conduct sensations from the upper (1), middle (2), and lower (3) portions of the face, as well as the oral cavity, to the brain. The ophthalmic, or upper, branch supplies sensation to most of the scalp, forehead, and front of the head. The maxillary, or middle, branch passes through the cheek, upper jaw, top lip, teeth and gums, and to the side of the nose. The nerve's mandibular, or lower, branch passes through the lower jaw, teeth, gums, and bottom lip. Note that more than one nerve branch can be affected by the disorder.

TN is characterized by a sudden, severe, stabbing pain. Typically, the pain is felt on one side of the jaw or cheek. Pain may occur on both sides of the face. The pain - which may last several seconds or may repeat in quick succession - comes and goes throughout the day & night. Episodes can last for days, weeks, or months at a time and then disappear for months or years. The second or third division of the nerve is affected in the majority of patients, with the first division affected 5% of the time. The right side of the face is affected 57% of the time. All three of my division on both sides of my face have been affected since the onset of my TN some 12 years ago. Prior to a painful episode, some patients may experience a tingling or numbing sensation or constant and aching pain

TN pain can be triggered by vibration or contact with the cheek (such as when shaving, washing the face, or applying makeup), brushing teeth, eating, drinking, talking, or simply being exposed to the wind. The pain may affect a small area of the face or may spread.

To be continued ...

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Permalink Reply by Robin Wood on July 4, 2008 at 9:05pm

Continued ...

TN is a characteristic symptom (not a disease). It affects women more than men in a ratio that has varied from 2: 1 to 4:3 in reported series with an average incidence of 4 per 100,000 people. Bilateral TN cases like mine can occur in about 3 to 6 percent of these cases. More than 70 percent of patients with TN are over 50 years of age when the disorder appears, I was 34 at age of onset. Yet, despite its uniformity of clinical presentation. TN has been linked to a variety of etiologic agents and possible pathophysiologic mechanisms.

Other disorders, such as post-herpetic neuralgia, can cause similar facial pain, as do syndromes such as cluster headaches normally associated with migraine headaches. Injury to the trigeminal nerve may produce neuropathic pain, which is characterized by dull, burning, and boring pain.

Most patients undergo a standard MRI scan to rule out a tumor or multiple sclerosis as the cause of their pain. The MRI may or may not clearly show a blood vessel on the nerve. Magnetic resonance angiography, which traces a colored dye that is injected into the bloodstream prior to the scan, is the better choice in seeing blood vessel problems and any compression of the trigeminal nerve close to the brainstem.

Until recently, treatment options included medicines, surgery, and complementary approaches. Recent advances in medicine have resulted in therapy, such as Curaelase Therapy, being used to alleviate the pain associated with TN, often preventing the patient from needing surgery for the same relief.

Anticonvulsant medicines—used to block nerve firing—are generally effective in treating TN. Tri-cyclic antidepressants are used to treat pain described as constant, burning, or aching. If medication fails to relieve pain or produces intolerable side effects such as excess fatigue, surgical treatment may be recommended.

The anticonvulsants phenytoin, carbamazepine and neurontin have been found to reduce or control the pain of tic douloureux. Dilantin is less effective. The usual approach to the treatment of tic douloureux at the present time is to try one of these agents; if inadequate relief or significant side effects occur with one, the other agent is tried. Because blood levels of these drugs have not been correlated with pain relief, it is recommended that the dosage of either drugs should be increased until pain relief is achieved. The standard dose of Dilantin is 300 or 400 mg/day. Tegretol should be started gradually, with an initial dose of 100 or 200 mg/day. At times, a dosage of 1200 to 1800 mg/day will be required for pain relief. I personally have such a hard time with the side effects of these meds I have never been able to get my dose up past 200 mg a day and am usually only able to tolerate the side effects for a week or so before I am reducing my dose.

Several neurosurgical procedures are available to treat Trigeminal Neuralgia. Some procedures are done on an outpatient basis, while others may involve a more complex operation that is performed under general anesthesia. Some degree of facial numbness is expected after most of these procedures, and TN might return despite the procedure's initial success. Depending on the procedure, other surgical risks include hearing loss, balance problems, infection, and stroke.

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Permalink Reply by Ellen S on July 5, 2008 at 8:46am

Robin,

Thank you so much for helping out on the TN information!!! this is a rare problem I know, but so many people spend years trying just to get a diagnosis, let alone treatment. They're told they're depressed or anxious or have a mental condition and given drugs they don't need to address those issues they wouldn't have if the TN would go away. Much like Migraine and other head pain, it is not well understood. When things aren't understood they are often attributed to mental illness or malingering.

I wish I could answer your questions about LPR. I don't know enough about it myself, but am learning more. I try to control it with a double dose of Prevacid, but it's not doing a very good job. I also have a small hiatal hernia, so I'm sure that's probably contributing.

Some people find that they actually don't have ENOUGH acid in their stomachs, and contributing more via a pill is what helps them. Contradictory yes, but it works for some people and I'm for whatever works.

The tissue hasn't been eroded seriously, just enough to cause a lot of pain. Eventually the erosion can cause cancer, which I'd just as soon avoid. The erosion is called Barrett's Esophagus and is actually pretty common and most people don't even know they have it. Repair comes by way of stopping the LPR and/or hiatal hernia so my body can do its job. I've been cut open too many times tho, so am trying to avoid this if I possibly can.

When the ENT (Ear, Nose Throat doc) told me this was my problem I didn't believe him. I tried the meds tho, which were simple, and did see what I thought was some difference. The problem was that another doctor had Dx'd me with Tic Doloreaux and gave me Valtrex to see if that would help, as well as Fluconazole to see if there was a candida problem, and some other med changes. I was already on Lyrica for Migraine.

I did get better, but figuring out which med did it has been a challenge. I now know that the LPR treatment was doing more than I thought it was.

I'm going to try the Valtrex again this week and see what happens, but right now most of my pain is in my throat, jaws and ear and gets worse if I'm not careful how I eat. I'm terribly hoarse. People hear me on the phone and assume I'm terribly ill and I'm usually doing really well, just froggy.

I've had the facial pain as well. I had a couple of weeks with the worst firing in my face I've ever felt DURING a horrible set of Migraine attacks and cluster attacks. At that point it was hard to see where one thing stopped and the other began.

I can't take many pain killers, so it was hard. I even had a root canal hoping it would help. I guess this is common. I was also told some of my facial pain and neuralgia could have been because of the vitamin deficiencies I had, so correcting those may have made a difference as well.

Most of the upper facial stuff is gone except when the LPR is bad, so I may never figure it out.

Your description was wonderful here. Thank you SO much.

Can you tell us how you got your diagnosis and if you know what triggered your TN?

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Permalink Reply by Robin Wood on July 10, 2008 at 1:48pm

Hi Ellen ... did You miss me. Sorry it's taken me so long to get back over here, we had a couple of days where a high presure system came thru so I took advantage of a couple feel good days and got some lil' chores done.

My TN is most likely caused directly and/or indirectly by a chemial injury, namely Toluene and a Heavy Metal Toxicity. I say indirectly because although Toluene is a know neuro toxin we may never be able to percisely say that is what caused it ... however and this is another whole huge topic of conversation, in directly both could of caused it from effects of the toxins on my body.

I had a dx farily quick, within a couple of months. I had an acute bi~lateral onset with all three branches involved so basically right off the bat it being caused from a lot of different factors was ruled out.

Within the months to follow I had 3 seperate MRI's, the frist was looking to see if they could identify where the nerve was being compressed, which showed nothing and is also not uncommon.

The second was to rule out brain cancer and tumors. The third which ened up being months and months down the road was to rule out MS.

The pain is severe just as You desribe and it's a pain that You will forever fear, it's so horrific. You know oddly though when I go thru these attacks, after everything is all calmed back down, I feel so cleansed, so light, so free ... it baffles me the serenity I feel from so much hell.

The pain that shoots up over my forehead from my eye and the one in my temples are the worst to get thru. I seem to be able to handle it more in my teeth as long as only one branch is invovled. When both branches in the teeth and both sides fire at the same time, I'm a gonner, that's beyond my ability to cope with.

It also depends on the intervals of the pain, sometimes they come quick and fast and will last hours and hours. Other times they might come slowly every half hour or so. Think of a the sky with 10 lightening bolts every couple of seconds at once as oppose to one every now and then.

Headaches or migranes are not a part of my life, thank god but I have read where others do experience them with TN

Robin

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Permalink Reply by Ellen S on July 10, 2008 at 2:37pm

Thanks Robin. I think chemicals are a much bigger influence than we even have a clue at this point in the game, for many illnesses and conditions.

I will try later this month to see if mom's friend will come on and tell of her experience with TN.

What I remember of it, she was Dx'd with Migraine, as most with TN have experienced. Family didn't have much sympathy. Like usual, they thought, "it's just a headache" and didn't understand.

She tried all kinds of meds. Can't remember if any worked for her at all. She was very debilitated. Her pain was in her temple region.

Eventually she made it to one of the top docs in Portland, OR and got a diagnosis. She went in for the surgery and came out a new person. No pain. Gone.

Her family, upon hearing she would be having surgery in her brain, re-thought their position on "it's only a headache" and became very supportive. From my understanding, this is very common as it is with dystonia.

She urged me to find a doctor familiar with this condition for a Dx. There are none around here, but oddly enough my Gyno Dx'd me based on experience with other patients. He put me on Valtrex in case it was caused by a virus, then suggested an ENT. That kind of clinched it. When they both heard of the 'lightning
strikes' across my throat, ear and face they were in agreement. when I looked it up on mom's friend's website (I'll try to include it here) I took his Neuralgia test and that too matched.

I don't have problems as bad as most. LPR is the biggest culprit and I can somewhat control that. I don't think I'm a candidate for surgery and am not bad enough to want somebody poking around in my brain yet, tho I did consider it.

Today isn't a good day tho. It's shooting from the crook of my jaw to the center of my lower front teeth on the R side. Just like a darned lightning storm. (I used to tell hubby it was like a child holding an electrical switch to my head, sitting in the corner, just flipping it randomly to see my reaction) It's not unbearable today tho it's been going non-stop since last night. Don't know what set it off this time. Maybe because I am very late for a B12 shot again.

The front pain won't usually trigger a migraine, it's the ear/throat or temple pain that does it for me. Since I had the nerve in the front of my (R) face partially crushed, I have not had a single "lightning attack" along that nerve.

Weird, huh.

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Permalink Reply by Robin Wood on July 10, 2008 at 3:39pm

I think of TN like this; You are in a dry field and a spark ignites a small fire, if that fire is not immediately put out, soon You will have a raging inferno and fire storm.

With TN You have to stomp out that spark immediately. Just like You need to take away the fuel from the fire, You need to take the triggers away from TN.

In many ways being non~responsive to treatment is a blessing because it forces me to think outside the box and probably see and realize more then most.

Realizing what my triggers are has not come easy, they often come at a price, for example; This past winter our nite time lows had been running steadily in the low 50's and I had been sleeping comfortably with a heater on low in the living room for weeks. I sleep in the living room in the winter because the cold north winds blow with a vengence here in the desert in the winter time and directly at my bedroom that has a lot of drafts. This one particular nite our temps dropped down to 34, silly me had not watched the weather in days, this was mistake number 1.

I awoke at 2 am with massive shooting pain, my trailer was about 50. I got up and went to my room thinking I could put that heater on high and get that room warmed up the quickest ... that was mistake number 2. As that heater has a fan that blows air and the air movement just increased the intensity of the attack, I added more fuel to the fire.

So I quickly got into bed to cover my head up with the blankets ... that was mistake number 3, as I layed my head down on the cold cotton pillow case and covered with face with the cold cotton sheets ... this intensified the attack even more. In the winter time I sleep only with flannel sheets and pillow cases, which were on the couch where I had been hunkered down.

Needless to say the attack got away from me and became a full on raging inferno, an attack so intense I was passing out from the pain and I ended up in the ER by 7:30 that morning. 5 1/2 hours of pure hell that had I been smart and just thought about turning on my oven to get the tempature up in my trailer could of been avoided. Had I watched the weather, like I know I need to, the trialer would of never gotten to cold to begin with. Cold is a major trigger. When it is firing my comfortable temp now is 85, anything below that I'm in trouble. It use to be 50 degrees but not anymore.

Other triggers were discussed in my frist post, like cold foods. Most of my foods out of the frig must frist be set out to warm up some and this includes ice cream. I have also learned that opening the freezer when the compressor is running is not a wise thing to do, as the fan is also on and freezing cold air rushes out and hits You right in the face.

I wear scarfs, bandanas and beanies on my head, because if my head gets any drafts or air movement on it that is a trigger. A key or warning to this trigger is ear aches ... omg I hate ear aches and I suffered thru so many for so long in both ears untill I finally realized how to avoid them. I even sleep with things on my head.

This time of the year is when people turn on fans and A/C's and don't realize these to be triggers. The air from fans and a/c vents can bounce off walls. It takes but the slighest breeze to act as a trigger when my TN is firing, by slight I mean like the wind from a bug flying by. The trigeminal nerve is a sensory nerve with TN it basically becomes hypersentive.

When ever I feel an ounce of pain I start an assessment of all my known triggers. I also use the Lidoderm patches. I cut them into strips and place them with medical tape along which ever branch(s) firing. The big catch here is I need to get them on soon enough for them to be benificial ... can't put out a forest fire with a little shovel. I will usually have to do 2 - 3 12 hr on rotations to fully get it calmed down, and this is done with watching any further triggers as well.

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Permalink Reply by Robin Wood on July 10, 2008 at 3:48pm

Con't

Since Yours is firing now, You should eat only room temp soft foods. And start going thru Your house, is there a window open with a slight breeze or where a cold chill from night can sneek in. Are You running a/c's and fans. I put card board to redirect my air flow from my a/c's and I run them one the lowest settings which keeps my trailer about 85. I can't run fans either.

Have You tried the Lidoderm patchs ??? Has Your doc ever told You how important is was to get them calmed down as soon as they started ??? My doc use to emphasise this to no end and maybe more so with me because I am non~resposonsive to everything.

I also wear a half ski mask to protect my face. I use anything but cotton to cover my face when in public, cotton holds the cold. I wear baggie sleeve shirts so I can easily use my sleeve when need be.

I am sorry to hear You are having a bad day, I hope You are able to turn it around soon and that some of this helps You .... Pay close attention to air movement in Your house, You may not even feel it on the rest of Your body, it can be that slight.

Robin

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Permalink Reply by Ellen S on July 10, 2008 at 7:25pm

Yes, air movement is huge for me. I woke at 3 this am and went to the living room so hubby could have the fan on. I went to sleep with it on thinking it was very light movement. My ears are now really starting up and I have to go outside to do horses in 10 minutes. I usually plug them. I don't think my triggers are touching my skin so much as internally. I already have to eat warmed food for migraine. No ice for Ellen. :)

Nope, doc didn't say that specifically, but I know with Migraine (which works on similar principles) that you need to stop it at the first sign. I've never found anything to stop it once it gets going good. I just do the best I can and wait it out. It's never sent me to the ER yet, tho I've considered it twice.

I hate the ER. Will avoid it at all costs.

I'm on Lyrica which I know is supposed to help. (You can read here about my Dekakote experience- ugh- and Neurontin ballooned me to 180 ppounds). I went off my full dose back in December. Maybe I should consider going back up again. I just hate it it SO much. I can't even think and there are times I don't drive because it makes me so goggly.

As for pain control- there's not much I can use. Mostly I just go to bed and pray for sleep.

Okay. Gotta go plug the ears and get thru the horse thing...

Thanks so much Robin. You have such good advice and knowledge! Anything else I should know?

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Permalink Reply by Robin Wood on July 11, 2008 at 9:22am

Ellen,

Have Your tried covering Your head when You get an ear ache ??? The upper branch involves the scalp.

I'm with You on the pain meds and neurotin and I clased, it don't like me and I don't like it. I literally can not funchtion.

I keep my bedroom as my dark and quite room. Dealing with the pain is not easy. I try and concentrate on my breathing and imagine that with every breath I take that a huge ballon is filling up, I keep concentrating on that ballon and soon I'm just floating away off to my happy places. I will also put on some of my sound scape music to help sooth my mind. I have a pond outside that when my windows are open fills my trailer with the soothing sound of water that I can concentrate on.

I find that more so then ever I soak up all the beauty that surrounds me, be it a catus in bloom, a bird in flight, pop corn clouds that float by, or a leaf fluttering in the wind ever so gently. I use these thoughts and memories to get me thru the tuff spells.

I read once where someone said that pain was weakness leaving the body, so I basically just try and stay calm and allow the weakness to flow out knowing that when it's over I'm going to be that much stronger. I can't deal with what's going on so I focus on the end result. Mind set has a lot to do with getting thru the attacks.

Have you ever seen the tower fans ??? They have a temp. setting on them to where You can set the temp to say 85 so if You fall asleep with it on and the temps drops during the night the fan will shut off. The air flow coming out of the fans is also softer and much easier to tolerate. There is also a feature on these fans called a breeze setting to wear the air flow goes up and down. Home Depot has them the cheepest for around 45.00 and they also have an ionizer in them. Walmarts are a little more in cost and they don't have the ionizier. I have one that I use as long as the house in over 85, which is often here in the desert.

I so hope You are feeling better today

Robin

Permalink Reply by Ellen S on July 11, 2008 at 12:50pm

Robin,

That's great info on the fan. I never shop for them because I never need one LOL! I'm always cold.

I don't try to cover my head, never tried it. Usually everything about my head hurts (allodynia) from the migraine pain that sort of takes over. Touching me is painful. I might try it tho... just in case it might help.

Didn't sleep much again last night. If I'm not careful, lack of sleep will trigger another migraine and I'll be really feeling awful.

I was just going to write that I would about kill for the sound of a running stream or fountain... then it began to rain and my window is leaking! drip-drip-drip...

Somebody shut the water off (in the Western US) already! We're drenched!

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