Have Anyone checked other Culprits for TN Symptoms

After reading this below it made me wonder if we are not going to the "root" of the cause. We are not Epileptic, why do we have to take meds for epileptics?

What Causes Peripheral Neuropathy

can either be inherited or acquired. The causes of acquired peripheral neuropathy include physical injury to a nerve, tumors, toxins, autoimmune responses, nutritional deficiencies, alcoholism, vascular or metabolic disorders.

Acquired peripheral neuropathies are grouped into three broad categories: those caused by systemic diseases, those caused by trauma from external agents, or those caused by infections or autoimmune disorders affecting nerve tissue. An example of acquired peripheral neuropathy is trigeminal neuralgia (also known as tic douloureux), in which damage to the trigeminal nerve (the large nerve head and face) causes episodic attacks of excruciating pain, quick as lightning, a side of the face. In some cases the cause is a viral infection, tumor pressure on the nerve or blood vessel dilator, or, rarely, multiple sclerosis. In many cases it is possible to identify a specific cause. Doctors usually refer to neuropathies with no apparent cause as idiopathic neuropathies.

Physical injury is the most common cause of injury to a nerve. Injury or sudden trauma, for example caused by an automobile accident, fall or sports-related activities can lead to nerves being cut partially or completely crushed, compressed or stretched, sometimes so hard that remain completely or partially separated from the spinal cord. Less dramatic traumas also can cause serious nerve damage. A broken or dislocated bones can exert damaging compression on surrounding nerves, and slipped disks between vertebrae can compress nerve fibers where they emerge from the spinal cord.

Systemic diseases, disorders that affect the entire body-often causes peripheral neuropathy. These disorders may include:

Metabolic and endocrine disorders. Nervous tissues are very vulnerable to damage caused by diseases that affect the body’s ability to transform nutrients into energy materials, processing waste, or substances that make up living tissue. Diabetes mellitus, which is characterized by chronically high blood glucose levels is a major cause of peripheral neuropathy in the United States. About 60 to 70 percent of people with diabetes have mild to severe forms of nervous system damage.

Kidney disorders may lead to excessively high amounts of toxic substances in the blood, causing severe damage to nerve tissue. Most patients who require dialysis as a result of kidney failure, develop polyneuropathy. Some liver diseases also cause neuropathy as a result of failures in the balance of chemicals.

Hormonal imbalances can disrupt metabolic processes and cause neuropathies. For example, a low production of thyroid hormones causes slow metabolism, causing fluid retention and swelling of tissues, which can push the peripheral nerves. The overproduction of growth hormone can lead to acromegaly, a condition characterized by abnormal growth of some parts of the skeleton, including the joints. Courses along the nerves to the affected joints are often caught.

Vitamin deficiencies and alcoholism can cause widespread damage to nerve tissue. Vitamins E, B1, B6, B12 and niacin are essential for healthy functioning of nerves. A thiamine deficiency is common among alcoholics, because they generally have poor eating habits. Thiamine deficiency can cause a painful neuropathy in the extremities. Some researchers believe that excessive consumption of alcohol can, by itself, contribute directly to nerve damage, a condition known as alcoholic neuropathy.

Vascular damage and blood diseases can decrease oxygen supply to peripheral nerves, which quickly produce serious injury or death of nerve tissue in the same way the lack of oxygen to the brain can cause a stroke. Diabetes often leads to constriction of blood vessels. Various forms of vasculitis (blood vessel inflammation) frequently cause hardening and thickening of the walls of blood vessels, which develop scar tissue, decreasing their diameter and impeding blood flow. This category of nerve damage, which occurs in isolated nerve damage in various areas, is called mononeuropathy multiplex or multifocal mononeuropathy.

Connective tissue disorders and chronic inflammation can cause direct and indirect damage to the connective tissue. When multiple layers of protective tissue around the nerves become inflamed, the swelling can go directly to the nerve fibers. Chronic inflammation also leads to progressive destruction of connective tissue, making nerve fibers become more vulnerable to compression injuries and infections. Joints can become inflamed and swollen, compressing nerves and causing pain even more intense.

Cancers and benign tumors can infiltrate or exert damaging pressure on nerve fibers. Tumors also can arise directly from the tissues of the nerve cells. Widespread polyneuropathy is often associated with neurofibromatosis, genetic diseases in which multiple benign tumors grow on nerve tissue. Neuromas, benign masses of tissue that can grow lush after a penetrating wound that cuts the nerve fibers, generate very intense pain signals and sometimes invading nearby nerves, causing even greater damage and pain. The formation of neuromas may be an element of a more widespread condition of neuropathic pain called complex regional pain syndrome or reflex sympathetic dystrophic syndrome, which can be caused by traumatic injuries or surgical trauma. Paraneoplastic syndromes, a group of rare degenerative disorders, produced by the reaction of the immune system of the person to a cancerous tumor, can also damage nerves in widespread indirect.

Repetitive stress frequently leads to entrapment neuropathies, a special category of compression injury. Repetitive activities, heavy, cumbersome and require the bending of a group of joints for prolonged periods, can cause cumulative damage. The irritation can cause the ligaments, tendons and muscles become inflamed and swollen, restricting the narrow ducts through which pass through certain nerves. These lesions are more common during pregnancy, probably because weight gain and fluid retention also constrict nerve conduits.

The toxins can also damage peripheral nerves. Heavy metals (such as arsenic, mercury or thallium) Industrial drugs or environmental toxins, which people have been exposed often cause neuropathy. Some anticancer drugs, anticonvulsants, antiviral agents and antibiotics have side effects that may include damage to peripheral nerves, thereby limiting its long-term use.

Infections and autoimmune disorders can cause peripheral neuropathy. Viruses and bacteria that can attack nerve tissues include herpes varicella-zoster (shingles) Epstein-Barr virus, cytomegalovirus and herpes simplex-members of the vast family of human herpes virus. These viruses cause serious damage to sensory nerves, causing attacks of sharp pain that feels like lightning strikes. Postherpetic neuralgia often occurs after a shingles attack and can be especially painful.

The human immunodeficiency virus (HIV) that causes AIDS also causes extensive damage to the central and peripheral nervous systems. The virus can cause several different forms of neuropathy, each associated with a specific stage of immunodeficiency disease. Often a painful polyneuropathy and fast forward that affects the feet and hands is the first apparent clinical signs of HIV infection.

Lyme disease, diphtheria and leprosy are bacterial diseases characterized by widespread damage to peripheral nerves. Although diphtheria and leprosy are now rare in the United States, Lyme disease is increasing however. Can cause a wide range of neuropathic disorders including painful polyneuropathy of rapid development, often within weeks of initial infection by the bite of a tick.

Viral and bacterial infections can also cause nerve damage, producing conditions that are called autoimmune disorders, in which specialized cells and antibodies of the immune system attack the body’s own tissues. These attacks typically cause destruction of the myelin sheath of nerve or axon (the long fiber that extends out from the main body of the nerve cell).

Some neuropathies are the result of inflammation caused by immune system activities rather than by direct damage of infectious organisms. Inflammatory neuropathies can develop in a slow or fast, and chronic forms may show an alternating pattern of remission and relapse. Acute inflammatory demyelinating neuropathy, more commonly known as Guillain-Barre syndrome, can damage motor nerve fibers, sensory and autonomic. Most people recover from this syndrome although severe cases can be life threatening. Chronic inflammatory demyelinating polyneuropathy is usually less dangerous, but although it can cause damage to the sensory motor nerves, autonomic nerves left intact. Multifocal motor neuropathy is a form of inflammatory neuropathy that affects only the motor nerves and may be chronic or acute.

Inherited forms of peripheral neuropathy are caused by inherited errors in the genetic code or by new genetic mutations. Some genetic errors lead to mild neuropathies with symptoms that begin in young adults and produce little or sometimes no deterioration. The most severe hereditary neuropathies often appear in infancy or early childhood.

The most common inherited neuropathies are a group of disorders to the disease known as Charcot-Marie-Tooth. These neuropathies result from flaws in genes responsible for the production of neurons or the myelin sheath. The characteristics of a typical Charcot-Marie-Tooth disease include extreme weakness and thinning of the muscles in the legs and feet, abnormal gait, loss of tendon reflexes, and numbness of the lower extremities

There are many illnesses that contribute to what causes peripheral neuropathy. While there are some that are preventable, there are many that are not. If you suspect that you may have peripheral neuropathy then you will want to seek medical care to prevent advancement of the disorder.

Tags: Auto, cause, Causes, condition, damage, Draft, inflammation, nerve fibers, nerve tumors, Neuropathy, peripheral neuropathies, peripheral neuropathy, result, sudden trauma, trauma

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I have had all of those check and then some. Since I have strong family history of auto immune disease in my family, the doctors think it could be that, but are not sure. The other is there was a dark spot on one side of brain that showed on the MRI. This too has been ruled out as a culprit. I would love to know what is the actual cause for mine. The fact is doctors still don’t know everything. My neuro thinks its on the micro level that is unknown at this time in medicine. Since they can not figure what is the cause the main focus is control the pain. Though my doctors are still thinking what the cause is. Which stinks because that means I get my blood drawn alot along other tests.

I wish my neuro would think like that and try to figure it out...he is great in telling me taht he won't let me hurt...he tries, but really.

I have had shingles, I have had viral meningitis along with all the other normal stuff: chickenpox, strep (before getting the tonsils out at age 35), etc. My doc did a MRI and I still to this day have not had a definitive answer to anything about it. I do know it was 'negative'..?..

oh well...just waiting and taking our meds for seizures (which I have never had...) - praying for a cure!

Kari, I read that a dark spot on the brain are signs of a past mini stroke, check out this site.

http://www.vitamins-supplements.org/dietary-minerals/potassium.php


Kari said:

I have had all of those check and then some. Since I have strong family history of auto immune disease in my family, the doctors think it could be that, but are not sure. The other is there was a dark spot on one side of brain that showed on the MRI. This too has been ruled out as a culprit. I would love to know what is the actual cause for mine. The fact is doctors still don't know everything. My neuro thinks its on the micro level that is unknown at this time in medicine. Since they can not figure what is the cause the main focus is control the pain. Though my doctors are still thinking what the cause is. Which stinks because that means I get my blood drawn alot along other tests.

Hi Mitzi, I’m trying to get my neurologist, opthomologist, cerebrovascular surgeon, GP anyone to test me, because I would just like the pain gone, I really don’t care what they call it anymore, if there is an underlying, treatable reason, then treat that.
At this point i have been told i have not got bilateral TN (it has just been changed to ‘ice pick’ migraine. Because it feels like someone is at my head with an ice pick !)
I’m going through a process of eliminating what i haven’t got…
In the meantime I’m in excrutiating dibilitating pain…
I’m on an epilepsy controling drug too and i don’t have epilepsy @Chris

I'm sorry, have you had an MRI yet? I was told that a DTI MRI is the best, although by the time they told me, it was too late. I was told that they didn't see anything wrong, and sent me to see a TMJ specialist. I'm still looking for answers, because I hate this MONSTER! Iwas told to see a chiropractor who specializes in Upper Cervical Treatment, as a matter of fact I saw two testimonies of ladies who are doing much better. The only problem is they don't take Health Insurance, but I'm checking w/my insurance to see if they pay some tipe of persentage.

This is an excellent collection! I will refer a lot of people to your discussion. Our own Jujubee has also started a blog about her research about TN causes. (And other nerves of the skull, cranial neuralgias). http://whydoihavetrigeminalneuralgia.blogspot.ca/

Here's her section that tells how neck vertebrae (cervical spine problems) can cause TN. http://bit.ly/NdAQbc

Your info is a bit different than hers, so I'm going to keep both around. I have had to teach my Dr. everything about this. I'm lucky my Dr. is receptive to new info. I've had some who are so proud they threw me out when I tried to show them new info from reputable places like Cleveland clinic, Stanford University, etc.

Your question about anti-epileptic meds, not sure if that was rhetorical or not, but if not, it's because anti-epileptic meds calm parts of the brain that makes nerve endings spasm and fire up with electricity. Anxiety meds do that too, so some take those in addition to other meds, even though they don't have anxiety.

My MRI showed nothing too, because mine is not caused by the only reason doctors know about, nerve and blood vessel pushing on each other. That means you have type 2 or Atypical TN, which most doctors also know nothing about. Sad that we have to do the research and teach the doctors, but it's true.They don't have the desire or time to research anything new or anything they don't already know.

The tumor part makes sense for me, but my symptoms actually started after my brain tumor was removed.

Maybe damage? I dunno. When I look at an MRI of the hole in my brain, it seems to be right where the trigeminal nerve is, but I'm not a doctor and my doctors are still clueless!

:(

"We are not Epileptic, why do we have to take meds for epileptics?"

Because TN does not effect enough people to make the pharmaceutical companies do any research into meds. So we have to use what drugs work.

There are at least two new investigational drugs now in trials. One is targeted against a gene in the trigeminal system, which offers hope of a management agent with fewer systemic side effects. Another approach using a variety of stem cell is in animal trials and may enter Stage II trials targeted on MS. However, this second medication helps the body to repair damaged myelin on the surface of nerves.

The anti-seizure meds are basically down-regulators of sharp pulses of electrical activity in the entire nervous system. They aren't "targeted" in the sense that they need to be for a balance between specific suppression of nerve impulses in the trigeminal system versus systemic side effects. But they are the best we have so far. Also useful against trigeminal neuropathic pain are meds in the class of tri-cyclic antidepressants.

Go in Peace and Power

Red

Mitzi, one observation if I may: while a lot of cases of face pain do seem to fall into the range of discrete neuropathic injury, most cases of "classic" or Type I TN probably don't. A neuralgia is distinguished from a neuropathy by occurring in only one nerve distribution at a time. Even the peripheral neuropathies generally affect multiple nerves. And as your posting observes, a great number of cases of TN cannot reliably be attributed to any single or reliable "cause", and are labeled "idiopathic".

A site like this one will inevitably see a mixture of types of face pain -- and (unfortunately) some mis-diagnoses of face pain. The diagnostic issues are important: different diagnoses can prompt different modes of treatment. It is not at all uncommon for diagnosis to change when a course of treatment proves to be ineffective, and some OTHER course of treatment normally applied to a somewhat different disorder proves to be more useful. In my personal view, the two predominant sources of missed or incorrect diagnoses are (a) inadequate training of dentists in the discrimination of neuropathic pain syndromes from TMJ disorder or bite problems, and (b) inadequate training of medical general practitioners to discriminate between neuropathic and neuralgia pain.

Go in Peace and Power

Red

Thats a very interesting read. Let me just throw this out there..has there ever been a diagnosis of TN and later it was found out that the person really didnt have TN, but had another disorder that caused this flare up. And was that disorder something treatable..I know its grasping at straws, but I am so confused by what the medical community says that I have started to wonder if something is causing this without actually having TN, or should I say a temporary TN.

Thanks, Wendy

Wendy,

If you are having pain in the trigeminal nerve, it's called trigeminal neuralgia no matter what the cause. Type 1 is only caused by a blood vessel compressing the nerve, but type 2 (atypical) can be caused by many different things, some of which can be treated, helping the pain. I got diagnosed with hypothyroid, was treated and the pain eased up. It just takes years to get hypothyroid completely corrected. Also, don't give up hope. Many of us have remissions that can last for years, me included. Vitamin D3 and sublingual vitamin D, which both heal nerve endings, have also helped me.

Sometimes an injury can heal, and that can be caused temporary TN I guess. I also had a bad fall in February, affecting my neck, which can be one of the causes, so I do wonder if I get cervical spine adjustments, if that will ease up the pain. It got much worse after my fall. So there are of course things that can help, depending on the cause; but since most of us don't know the cause, we try the various treatments for different causes, and if one works, voila, we probably found the cause.

Sheila I am also Hypo thryoid, I take a huge dose of snythroid , my doctor said its the largest dose he has ever prescribed for it. Its the only way I can get out of bed, but I think when I go to the next neuro I am seeing I will ask if perhaps the high dose caused this. I also have a pretty bad neck injury from a car accident, my neck is straight now , with no bend at all. I actually got a 1/2 inch talled from the injury. I am sure these may be contributing to this issue, but not sure what they can do to fix either one without messing something else up.

You did answer my question, since I have mostly type 2 it is possible then that some other cause could be corrected and perhaps help with this.

thanks, wendy

We should all get together and demand more research, I'm sure there is a lot of us here who would want to get some answers and a lot more people out there who have the same symptoms without any answers to what they have. I just cannot get over the fact that we are all taking some type of Epileptic medication for TN, and not all the same name or same mgs. I'm also starting to suspect that if anything, the medication is making the Nerve get worst and the med will eventually mess up the Nerve on the other side of the head.



tkal said:

"We are not Epileptic, why do we have to take meds for epileptics?"

Because TN does not effect enough people to make the pharmaceutical companies do any research into meds. So we have to use what drugs work.

My neuro actually said that he thought my right side pain was coming from the meds Mitzi, so you are on to something. I never had the pain in the ear until I started taking carbamazapine. I would be glad to be part of a group to demand research I can be pretty forceful when I want something done!

Wendy

Mitzi said:

We should all get together and demand more research, I'm sure there is a lot of us here who would want to get some answers and a lot more people out there who have the same symptoms without any answers to what they have. I just cannot get over the fact that we are all taking some type of Epileptic medication for TN, and not all the same name or same mgs. I'm also starting to suspect that if anything, the medication is making the Nerve get worst and the med will eventually mess up the Nerve on the other side of the head.



tkal said:

"We are not Epileptic, why do we have to take meds for epileptics?"

Because TN does not effect enough people to make the pharmaceutical companies do any research into meds. So we have to use what drugs work.

They have researched it enough to come up with MVD surgery, gamma knife and other non medication approaches. Here's a list of clinical trials. but with no real cure.

http://clinicaltrials.gov/search/term=Trigeminal%20Neuralgia

Hi Mitzi, Wendy and everyone else,

I've also been wondering about the side-effects of antiepileptic drugs, for example my left hand started to hurt for no reason about 10 days ago, I notice I do more typos in my emails etc. and I'm on a low dose on Neurontin! I don't want to see what happens when I'm upped in a few days/weeks. At the same time I think if we don't control the pain by taking medication we'll mess up our brains too because chronic pain in itself can alter nerves...there seems to be no way out. But I guess there's probably something to what you said about the medication causing pain, take for example people who are treated with anti-seizure meds and their symptoms go away only to come back some years later in a more evil form. I wish there was a more natural way to treat this and I keep looking into different options and sometimes I mail people who do alternative medicine asking about their approach to treating TN but there are no definite answers and cure-alls. I've already spent a small fortune on various therapies (mostly before being diagnosed) and am still at square one, I'm afraid.

B12 is always a good vitamin to take since it's responsible for repairing myelin but it is far from a cure. I've had b12 shots each month for 3 years now and still developed TN. Now perhaps it held it at bay for awhile but I'll never know. I take it because my body can not longer absorb it from food, nor can it store it. Perhaps my low b12 levels before I had problems is responsible for nerve damage - but again, I'll never know. However, B12 is usually recommended by neurologists because of issues of neurologic problems and a low b12 can mimic dementia.

Having said that I am on trileptal and am having mild ataxia that is very similar to the problems I started seeing with low b12. I get my next shot on friday and will see if this helps the ataxia.

Tkal, Thank you for that web site. My next question is, why don't more doctors know about Trigeminal Neuralgia? When I mention Trigeminal Neuralgia, some of them look baffled or like it's no big deal. Then there should be more Medical Trainning available.


tkal said:

They have researched it enough to come up with MVD surgery, gamma knife and other non medication approaches. Here's a list of clinical trials. but with no real cure.

http://clinicaltrials.gov/search/term=Trigeminal%20Neuralgia