NeuroTalk Support Groups - Desperate for help for my teenage daughter with ON and FM

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Desperate for help for my teenage daughter with ON and FM

My daughter is 14 and is in excruciating pain daily from occipital neuralgia. She had it once over a year ago and the nerve block helped but when they tried it last month twice, she felt no relief (not even numbness from the lidocaine) She has also been diagnosed with fibromyalgia. Cymbalta didn't seem to help so we took her off that. She is on amytriptyline and just started gabapentin. She has missed weeks of school. I am desperate to help her without the use of surgery. Any info will be greatly appreciated!

Hi, I have neuralgias of the cranial nerves, not just one, but 10 on my right side. I have been dealing with this since I was 21, I just turned 48. It is a long, hard journey. But all life is.

In 25 years of treatment, you list the drug or treatment I've taken it. I've also had brain surgery. (I have not had radio ablation therapy.) So far, what has helped is the Botox and muscle relaxants, cognitive therapy for pain control and a yoga practice.

Do not let the physicians cow this young person and make her feel like this is all her in her head or that she is malingering. I heard these things so many times...and I was a Marine! We do not malinger. This is a miserable and vicious condition that will take all your energy to help her.

I don't even know how to complile all that I want to say about this. but please. Be her advocate! Be tough, and fight for treatment. The powerful drugs like Gabapentin are hard on the rest of the body systems she is young and needs to have her body stay healthy for a long time. A lot of them add weight and cause lethargy and that is only one more burden for a young lady to bear.

At my lowest, I attempted suicide twice because the pain was so bad and because the medical establisment found it easier to accuse me of searching for narcotics rather than to work to find a better way.

Narcotics really don't help nerve pain, btw. Don't get her started on them, They don't help with the pain and are addictive.

I have two sisters with this also. One has taken the route of narcotics/heavy pharmacuticals, her life is pretty miserable and now she is addicted as well. And extremely overweight because of medications.

The other just got diagnosed and is going thru what ever her docs recommend, although she asked for and recently got Botox because of my experience with it and it has helped.

Good luck to you. Good luck to your daughter. You will need it.

Quote:

Originally Posted by jlo63 (Post 1046850)

Neuralgia can be very difficult to treat. Treatment generally consists of antidepressants, antispasmodics, or muscle relaxants - or a combination of these, often with narcotics used to treat breakthrough pain. There are many such medications, and it is often a matter of trying one at a time to see what works. It can be a very laborious process to find what works, but your daughter is likely to find some relief.

If you are not currently seeing a pain physician, I recommend you finding one, particularly one in a pain clinic setting, and preferably one connected to a major teaching hospital.

Since fibromyalgia has been diagnosed, it is reasonable to try Lyrica (similar to gababentin, but oftentimes one med works when the other fails). Don't give up hope - there is help out there!

Hi,
I have ON from a car accident. My 2 sets of steroid blocks did not last.

Worst migraines ever. I had the radio ablation on both sides. Healing from 2nd one now. I don't live under the blankets and pillow daily now.

I'm over done for now. If you want to know more check my posts or pm me. I'll gladly help I can!

Peace and wellness,

Jace

I would think outside the box for care also, if MDs aren't able to help very much.

Naturopathy, acupuncture, chiropractic, hypnosis , I'd try some of those before before invasive procedures or heavy meds.
There's probably other alternative therapies that I can't recall at the moment..

spirulina saved my life

I have genicular neuralga. Spirulina has been a god send. Ironically, my horse has trigmenial neuralgia. Spirualina saved his life--literally--, so I decided to try it. Within 2 days, the symptoms started to subside.

You can get it at your local health food store, but I use the same brand as my horse. This brand is very high quality, is tested and is cheaper than the small bottles you can buy at the store. *administrative edit* is the website.

I take 4000mg twice a day. The horse wafers are large, so I break them in half.

Best of luck to you and your daughter.