Trigeminal neuralgia treatment without health insurance
April 26, 2009 10:30 AM   Subscribe

Trigeminal neuralgia. I recently found out it's the cause of the random, stabbing shocks in my face and I'm looking for experiences and advice, especially with regards to treatment. What helped? How did you deal? Did it go away on its own? I have no insurance, so while I'd like recommendations on ALL treatment forms ones that don't cost as much are especially welcome.

It arose about a month ago, and started happening maybe once a week and now the pain comes multiple times in an hour. I just had an episode that wouldn't stop and I was afraid I'd have to go to the hospital. I'll do anything to stop this from getting worse.

(Also, are there any aid plans for people with chronic pain conditions who don't have health insurance?)
posted by anonymous to Health & Fitness (9 answers total)
I feel your pain -- literally. I get trigeminal neuralgia sporadically, so sporadically that I've never actually tried anything for it, since it's over in a few minutes and rarely happens more often than once a week. Neurontin (gabapentin) might work, but it's also known as Morontin from its effect on some people (I am one). Some people have reported relief from nerve pain with plain old Gaba, a supplement available over the counter.

It is truly an awful pain. It's like being stabbed n the side of the face.

I don't want to freak you out, but in my case it turned out to be an early indication of what turned out to be multiple sclerosis (the primary progressive form in my case). But I'm sure there are other possible causes -- perhaps a problem in your spine, or just an inflammation somewhere.

Whatever the root cause turns out to be, if there's any way you can get insurance, even with a high deductible, before you get any fiurther into the diagnosis of the pain, it would be a good idea.
posted by words1 at 10:46 AM on April 26, 2009

I am sorry that you are struggling with such a painful disorder without health insurance. I am familiar it because I once did editorial work for a dental anesthesiology publication, and it's simply horrendous.

I suggest you sign up for the Trigeminal Neuralgia Association forums to get some much-needed support and practical advice from other people familiar with the disorder about how to get treatment.

Low-cost pain management tools to consider: there is some literature suggesting that acupuncture is a good addition to traditional therapies. Diet changes have also been reported to help; some people have found following the Lemole program useful. Other people have reported relief from biofeedback.

Of course, these are complementary therapies -- many people require opiods to manage the pain and, eventually, surgical intervention to fully resolve the problem. Even without insurance, you have got to get some skilled medical care and pain management. I hope very much that you can find a way to get that without it being financially catastrophic. Goddamn it.
posted by melissa may at 11:25 AM on April 26, 2009

Seconding getting insurance. If it seems expensive now, wait until you have a pre-existing condition and a period with no coverage. If it gets really bad and you go to the ER for it, you become virtually uninsurable if you're in the US.
posted by nosila at 11:34 AM on April 26, 2009

Have you tried applying for Medicaid?
posted by The Straightener at 2:08 PM on April 26, 2009

Here you go, duder, the Maryland Medicaid Eligibility page:


You're looking at the Medically Needy section. The standard is pretty stringent, but if you are the starving post-college type you may qualify.

Medically Needy

To be determined eligible for Medicaid as “medically needy”, the individual or family must be in one of the previously mentioned groups.

The household’s income is used to determine if they meet the standards for medically needy.

If your assets are no more than the medically needy limits, but your income exceeds the medically needy standard, you may “spenddown” to qualify for Medicaid coverage during a six-month period. The difference between the amount of your income and the eligibility standard is called excess income. Under the spenddown process, your application will remain open until the end of the six-month period. If during that time you incur medical expenses, the amount of your medical bills can be deducted from your excess income. If you eliminate your excess amount within the six-month period, you may be determined eligible for Medicaid for the remainder of the six-month period.

To qualify for Medicaid as “medically needy”, your assets (i.e., resources) must be no more than the cap for your household size (e.g., $2,500 for a household of one person). There is no spenddown process for assets. If a person or household is asset over-scale as of the first day of the month, the person or household is ineligible for the entire month. The individual or household will remain ineligible until the assets are reduced to below the medically needy limit through allowable means (such as daily living expenses). The individual or household may then reapply for Medicaid. If the assets are transferred or disposed for less than full value within 36 months before applying for Medicaid, there may be a penalty period of ineligibility for Long Term Care or waiver applicants.
posted by The Straightener at 2:23 PM on April 26, 2009

Response by poster: I don't make a lot of money, but I don't like to spend it either so I have about $3000 in savings. Does that mean in order to qualify I would have to maintain less than $2500 in savings at all times?
posted by Anonymous at 2:31 PM on April 26, 2009

Yes, you would, but it might be worth it to get the coverage. I can't say what kind of pain services you would be eligible to receive under medicaid, but at the very least you will have emergency coverage if you absolutely need to go to the emergency room.
posted by The Straightener at 2:42 PM on April 26, 2009

Posting for my father:

The first thing is definitely to get a proper medical examination by a neurologist, as many conditions apart from TN can cause facial pain. General practitioners do not have much experience of TN. A proper diagnosis will require scans and/or X-rays as well as other tests to rule out other possibilities.

Trigeminal neuralgia, if it is persistent, is so severe that it cannot be borne and must be treated. However, it may go into remission for varying periods (as mine has).

There are patient associations in the UK and US (search for trigeminal neuralgia association or TNA) which may be of some help, but TN forums for patients can be seriously misleading.

Following scans etc showing that one of the possible causes of TN was present in my brain, I have NHS approval for an operation if my TN returns. The operation is quite high-risk so I haven't gone for it. Yet.

I was on 400mg carbamazepine for a year until my TN faded away. The drug was quite effective but made me too dozey to work properly. My TN has not returned for some years now.
posted by paduasoy at 2:58 PM on April 26, 2009

PS (posting as me now) My mother also had what was initially diagnosed as TN, but was later re-diagenosed as atypical facial pain. This was treated with amitriptyline and hasn't reoccured in about fifteen years.
posted by paduasoy at 3:00 PM on April 26, 2009

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