Ray D’Alonzo, Ph.D., is a visiting professor in the Chemistry Department of the University of Massachusetts Amherst and a retired R&D Manager of Procter & Gamble where he worked for over 31 years.  He has led research programs in bone metabolism, infectious disease, respiratory disease, arthritis, and nutrition and has published scientific papers on a wide variety of topics from the chemical composition of fats and oils to the pharmacoeconomics of osteoporosis.  Dr. D’Alonzo is the recipient of the Chancellor’s Medal from the University of Massachusetts, Amherst, in part, for his contributions to the development of new pharmaceutical agents.  As both a patient and scientist, he has made a personal effort to increase the awareness of Chiari in the health care sector and to assist others afflicted with the syndrome.  He has published the story of his personal struggle with Chiari in a book, Contents Under Pressure, with 100% of royalties going towards Chiari education, awareness, and research programs.

January 31st, 2009 --     

Drugs are critical for treating disease and the symptoms of disease and as many say a miracle of modern medicine but they are also toxic and can cause unwanted side effects. Prescribing a medication and continuing its use requires weighing its benefits against its harms. The balance between benefit and harm often lies on the side of benefit when disease is present. But often disease is not present or has passed and continuing drug therapy can be detrimental to the individual.

You might ask. “What is he talking about?” “People don’t take medication when they are well.” Not true. There are a lot of people who are well but who take unneeded medication on a chronic basis. This happens more than you might imagine when it comes to people who have taken medication for pain, sleep, anxiety and depression. These conditions are usually limited but many of the drugs used to treat them are addictive or cause dependency. As a result, when people think the condition has run its course and try to stop taking their medication, they experience significant rebound symptoms. Often, the rebound symptoms are so strong and so persistent, the individual wrongly concludes that their condition has not passed and they resume taking medication. There is also a wide range in the way patients respond to discontinuing medications. Some do not find it difficult while some others find it nearly unbearable.

Doctors are very good at placing patients on medications but very ineffective at helping them discontinue medications. It is not really appropriate to be critical of physicians in this respect. It’s understandable. Patients attempting to discontinue medications for these conditions complain a great deal and will often call and “nag” their doctor endlessly. Doctors simply do not have the time to support patients attempting to discontinue taking medications. If they did, other sick patients would get the short stick. So, doctors most always respond to nagging patients by telling them to resume taking their medications. There is also a liability angle to all this. The doctor cannot be sure that the patient’s condition has really improved. If the patient’s underlying condition has not improved and they insist that the patient remain off medication and something bad happens, the doctor may be liable.

It’s a difficult situation to say the least. There are some doctors and pharmacists that specialize in assisting patients in coming off medications but they are difficult to locate.

I thought it might be helpful to many of the newsletter’s readers to share my personal experience with this. When I was managing through my Chiari ordeal several years ago, I presented with severe depression, anxiety, and insomnia. Pain was not a significant component in my case. I was placed on several medications to help me with these problems. At one point I was taking Ambien, Zyprexa, Remeron, Klonopin and Ativan at the same time. I was basically on this cocktail or similar one for 4 to 5 years – a year and a half before decompression and several years after decompression. Along the way, some adjustments were made like replacing Remeron with Elavil or trying Restoril in place of Klonopin but I took a sedating cocktail for a long time.

I found it extremely difficult to shed these drugs. After decompression, I very gradually improved. After a couple of years, I began to feel well again and decided to wean off my medications. In consultation with my psychiatrist I attempted to eliminate one drug at a time by gradually reducing its dose over weeks or months. It was not a straight line to say the least. I would lower the dose, feel bad after a few days, and then increase the dose again. It was very definitely a two step forward, one step backward path. My psychiatrist was confident however that I would succeed. She said that I did not have an “addiction prone” personality, whatever that meant. I certainly had my doubts.

Every time I attempted to discontinue a drug or lower the dose of a drug, the withdraw and rebound effects were severe. I was convinced that my underlying condition wasn’t better. To make a long story short, it took me about 2 years to shed all the drugs. It was a slow and difficult process that required incredible persistence and a deep desire to be drug free. There were many times of self doubt and many times when I was convinced that I would be on drugs the rest of my life. At one point, I experienced rebound insomnia to the point where I did not sleep a minute over an eight day stretch. Elavil was the last drug I shed. I clearly recall when I discontinued taking the lowest dose. Every time I moved my eyes (without even turning my head) I heard a loud swishing sound in my head. It persisted for a total of 6 weeks but then finally passed.

Many times along the way, I was convinced I was still ill but I wasn’t. The rebound side effects were powerful and extraordinarily deceiving. Coming off drugs was the best thing I could have done for myself. While I felt OK and functional while on them, I found that I felt fantastic once I got off them and the rebound effects finally dissipated.

If you have been decompressed and are feeling better but still taking medications for the Chiari symptoms you once exhibited, talk to your doctor or psychiatrist about weaning off them. Do not get discouraged along the way. Try not to be fooled by the rebound side effects. They will do everything possible to convince your body that you are still sick and need them. Realize that the road to being drug free is not a straight path but a very bumpy one. It’s OK to take backward steps along the way. It’s fine if the weaning process takes months or even years. Finding ways to stay busy or exercising can also be helpful. Be prepared to bite the bullet from time to time. Rebound insomnia will not kill you. You would be surprised how long you can go without sleep without falling apart. By no means is it easy. It’s down-right uncomfortable and often agonizing but you won’t break. And, while you may have others who depend on you or who you love, don’t agonize over getting off drugs for their sake. Do it for yourself. After all you’ve been through you deserve it more than anyone else.

-- Ray D'Alonzo

 ** If you would like to share your comments, thoughts, or ideas with Ray,  please send them to dalonzo.rp@gmail.com.  Due to the volume and nature of email received, individual responses are not possible. **

[Ed. Note:  The opinions expressed above are solely those of the author.  They do not represent the opinions of the editor, publisher, or this publication.  Mr. D'Alonzo is not a medical doctor and does not give medical advice.  Anyone with a medical problem is strongly encouraged to seek professional medical care.]    
 

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