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"No More Bobbling Head!": LDN Alleviates Pami's Cervical Dystonia

March 06, 2018

Cervical Dystonia:

Cervical dystonia, also called spasmodic torticollis, is a rare, painful neurological condition in which neck muscles contract involuntarily. These contractions cause abnormal movements and awkward posture of the head and neck. Typically, the head uncontrollably twists or turns to one side and/or tilts forward or backward, either in a jerky or sustained fashion. There is no known cure. The disorder sometimes resolves without treatment, but sustained remissions are uncommon.

How did your cervical dystonia start?

Over the past 4 years, I developed a head that “bobbles”- it bounces uncontrollably. The condition was so noticeable that when out in public, everybody came to ask if I was okay. Who wants to be noticed that much? It’s bizarre. I had no pain but it was exhausting. Over the years it got worse and worse, until I could no longer handle it. I didn’t know what to do, so I went to a neurologist, who clarified that it was cervical dystonia.

What medical treatments were you offered?

At first my neurologist said it was just a benign tremor, so there was nothing to be done. It wasn’t until the head movement got so severe I could no longer stand it that they gave me a medication. But that was horrendous. I only tolerated it for 2 days due to the side effects, and had to stop. Another neurologist gave me the option of doing Botox® injections in the neck. But because I’m allergic to almost everything, and Botox® remains in the body for months, if I were to get sick from it, it would take months to recover. So I didn’t do it. I had no other options.

How were you introduced to LDN?

Back in 2008, before the cervical dystonia, I was diagnosed with triple negative breast cancer. I researched treatment options, and in the course of doing that, I came across LDN. I asked my oncologist to prescribe it and although he said LDN looked safe and non-problematic, he said his practice wouldn’t let him prescribe it. After doing further research, I reached out to Dr. Jacquelyn McCandless and eventually became her patient; it was her thinking that almost everyone should be on LDN prophylactically. Later, I attended an LDN conference at the National Institutes of Health where I met an integrative physician who agreed to become my personal physician. She discovered I had additional autoimmune conditions, and supported my taking LDN among other treatments.

How long did you take LDN the first time?

I took LDN for 7 years straight. I took it well beyond the 5 year “expiration date” they had given me to survive the breast cancer! Since I seemed to be doing well enough at the end of 7 years, and money was an issue (LDN is not covered by insurance), I stopped taking it.

What made you consider trying LDN for the cervical dystonia?

After suffering with it for several years and having no viable treatment option available to me, I wondered if LDN would help. I knew that it wouldn’t hurt me to take LDN. There are virtually no side effects. Since I had a bottle of LDN left in the house, I thought, “Why not try it to see what happens?”

Within 24 hours of taking a 4.5mg pill of LDN, I would say I was 75% better. I mean better. I was so much better that I thought a miracle had happened.
What happened after you took LDN for the cervical dystonia?

Within 24 hours of taking a 4.5mg pill of LDN, I would say I was 75% better. I mean better. I was so much better that I thought a miracle had happened. I cannot tell you how ecstatic I was, because there were no other options.

Did you continue to take 4.5mg of LDN?

I did for a couple months, but I wanted to see if I could get even more improvement. I started researching again and found that 6.0mg of LDN seemed to be the “apex” dose. Beyond that dose, it doesn’t seem to help as much. I called my compounding pharmacy and told the pharmacist that 4.5mg wasn’t enough for me and 9.0mg (which I tried for a week or two) felt like too much. She agreed that 6.0mg LDN might be the “sweet spot” for me. I then had to convince the original integrative physician to prescribe 6.0mg to me.

I encourage doctors to get out of the “4.5mg LDN is set in stone” mindset, because it’s not enough for many people.
Did your integrative physician agree to increase your dose of LDN?

Surprisingly, he was very resistant. Because 4.5mg is the standard dose in most of the published LDN research, some physicians treat it as almost breaking the law to prescribe more. Not only allopathic doctors can get stuck in dogma-- functional medicine physicians can too. I encourage doctors to get out of the “4.5mg LDN is set in stone” mindset, because it’s not enough for many people. Half a milligram of LDN might be enough for some people, but 4.5mg may not be enough for many others. It was really stressful to try to convince a physician to prescribe 6.0mg of LDN. I had to do my own research to find others taking 6.0mg and provide evidence that it was perfectly reasonable to try it.

Having the symptoms so subdued (almost non-existent) after taking LDN has been huge for me.
What happened when you increased your LDN dose?

I achieved optimal improvement when I moved from 4.5mg to 6.0mg of LDN. The involuntary head movement was 90% better. Most of the time, there’s no bobbling at all. It’s no longer exhausting. I don’t have to think about it all the time. Having the symptoms so subdued (almost non-existent) after taking LDN has been huge for me. And there were no side effects, except for good side effects. I think it’s helping with other conditions I have. I just can’t see the benefits as obviously as with the head movement.

What did your physicians think about your improvement following LDN?

The oncologist who had originally refused to prescribe LDN to me 10 years ago was in shock when he read in my neurologist’s records that LDN was working for my cervical dystonia. My neurologist was also surprised. Ten years later, my oncologist is now prescribing LDN for cervical dystonia. So if you’re persistent, and you keep trying, sometimes you’re successful!

What were you hoping to accomplish with this LDNscience interview?

I did a lot of research into treatments for cervical dystonia, and I saw LDN mentioned nowhere. So I appreciate being able to spread the word about another condition that LDN is having success in--supreme success-- so that maybe this knowledge will help somebody else.

If something as simple as LDN with no real harm or side effects can alleviate pain and suffering (which is the highest good), please look into it.

In addition, if I hadn’t been persistent after physicians refused to prescribe LDN to me-- going far and wide and to great expense--I would never have gotten on it years ago. And therefore I probably wouldn’t be on it today. So I ask physicians to open your heart and mind. If something as simple as LDN with no real harm or side effects can alleviate pain and suffering (which is the highest good), please look into it. Please research it. If you or your family member was suffering, and LDN might help, I bet you would do so. Please feel free to contact me if I can be of assistance.

More about Pami:

I’m 59, live in Louisville, KY, have a 32 year old son whom I love, and am Savta (grandmother) to the 2 boys that come with my son's significant other. I have been a Licensed Massage Therapist since 1994 and am a Certified WFPB Health Coach. I’m a Jewish Humanist, and active because I am always looking for community in my life. I am a life long volunteer and learner, and I listen to lectures everyday. I have been on the Jewish Film Festival committee for 10 years and volunteer for (a food addiction program). I love walking, which is now all I do; in the past I was a triathlete and certified in Bikram Yoga. I am a very passionate person and helping repair the world is what keeps me going. I want to thank the people that take the time to watch my contribution and to be open minded to all possibilities. I love to share and meet others on this journey. You can contact me at [email protected]

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