Severe reaction to medication...Trip to ER

Some of my medications are filled at a compounding pharmacy. It is a family owned pharmacy and those who work there are extremely kind and helpful. Last week I went to pick up a prescription refill, and the owner of the pharmacy inquired as to how I have been feeling lately. I informed him that I have not been doing well. He and his daughter brought up the topic of a medication called Low Dose Naltrexone (LDN). I am well aware of this medication, as my father had sent scholoarly journal articles regarding the usefullness LDN in a variety of diseases, specifically autoimmune diseases. It is also utilized in patients with MS, cancer, among many other problems. Since the articles specifically mention the effectiveness of LDN in treating Behcet's, I have been researching the drug. The literature that discusses treatments for Behcet's is quite limited, so you can imagine how interested I was in further pursuing my research.

LDN is designed to repair the body, particularly boosting the immune system, and works while the individual is sleeping. It is not FDA approved or patented, and is very cheap. It is typically considered a safe medication and does not have side effects or is not known to interact with medications. One exception to this is narcotics. Given that I am on high doses of narcotic painkillers, I immediately dismissed this as a possible treatment for my Behcet's. The typical dosage used to be 50mg, but has recently decreased to 4.5mg. The pharmacist informed me that since the dosage had been reduced, although still remaining effective in the treatment of chronic illnesses, it could be a possible treatment for me to consider. He then gave me a referral to a naturopathic/alternative medicine doctor who often prescribes LDN. Not many doctors prescribe this medication due to the fact that it is not patented and other doctors in the community typically frown upon those who do prescribe it. I decided it couldn't hurt to consult with this doctor and see what his thoughts were.

I was immediately placed at ease upon scheduling my appointment because the woman who I spoke with reassured me that I was "coming to the right place." She continued to inform me that this doctor is very helpful and has effectively treated numerous patients with diseases similar to mine. When meeting with a doctor who was completing his residency at the office, he obtained a thorough history of my medical issues, including the medications that I am currently taking. He strongly pointed out that given  the number and high doses of pain meds that I take, I would not be a candidate for LDN as a potential treatment. I was disappointed, but was still interested in seeing what the doctor had to say.

This doctor was very friendly, and stated that his first principle in working with patients is "do no harm." Which is actually what every doctor attempts to do. We discussed my case and he then introduced LDN. He informed me about the medication including how it works, how it may be extremely beneficial to me, and placed significant emphasis on the fact that this medication has ZERO side effects and is extremely safe. He continued by reiterating how safe the med is especially when compared to the numerous medications I have taken that are quite poisonous/toxic to the body. Needless to say I was extremely concerned about the potential interaction between LDN and the painkillers. He put me at ease, saying that it would absolutely not interact with the pain meds. He prescribed me wih the maximum dose, which is 4.5 mg.

This visit occured on Monday, December 10th. I waited to take the pill until about midnight, as I was going to sleep. Within approximately 30-45 minutes, I became violently ill. I experienced severe abdominal cramps, diarrhea, excessive sweating, runny nose, prickly / burning on every inch of my skin, and worst of all, akathisia. For those of you who aren't aware of what akathisia is, it is a severe form of restless leg syndrome, but affects the entire body. It is difficult to explain the subjective experience of akathisia. I have suffered from this many times, but this was by far the worst. It feels like your entire nervous system is out of control, which it is. It is almost similar to anxiety/panic, yet different. You feel the need to stretch every muscle in your body in attempt to rid yourself of the horrible feeling. The body thrashes, especially legs and arms. After feeling this way for about 30 minutes i woke my mother up, telling her what was going on and that I needed to go to the hospital. While she was getting ready, I begged her to call 911. She insisted on driving me herself.

Upon arriving at the ER, my mom asked for help getting me into a wheelchair while she parked the car. I was wheeled to the registration, where a nurse asked about my demographic information and why I was there. I told her the best I could, as I was extremely sick and uncomfortable. Out of nowhere, my entire body cramped up and the motion catapulted me out of the wheelchair and onto the hard wood floor. I hit my head and the entire right side of my body. The nurse asked for help, and they successfully got me into a room. My mother had to discuss what was going on with the doctor as I was in and out of consciousness and was unable to communicate much of anything. It was terribly frightening. It was then that I began to receive what my mother and I believe to be improper treatment. Once my mother informed them that I was taking LDN, they immediately treated me like a drug addict. This is because Naltrexone is also utilized as a treatment for individuals with an addiction to opiods. It works by entering and filling the opiod receptor sites in the brain so that the painkillers are unable to be effective. If one takes this medciation in conjunction with narcotic pain meds, it will send the individual into extreme withdrawal. This is essentially what happened to me. I was experiencing sudden withdrawal symptoms from narcotic pain meds.

I was given Ativan, Benadryl, and Dilauded (pain med that I take). At no point in the visit was I assessed for the head injury that I incurred by falling out of the wheelchair and onto the floor. The doctor and nurses were not kind at all. They were not informing my mother what was going on. At one point, they asked her to leave the room because the convulsions/akathisia had ripped my IV out and the salene was spraying everywhere. They cleaned me up, and my mom re entered the room. At this point, they felt that I was okay to go home. Typically, whenever I have a bad case of akathisia, my PCP always hospitalizes me because the high doses of Ativan to counteract the reaction to the medication causes severe imbalance and dizziness, thereby making it unsafe for me to get up and walk around. This is exactly what happened. Whenever a patient is discharged from the ER, the doctor is required to discuss the diagnosis and treatment with the patient or whomever is with that patient. Since I was rather out of it, the doctor should have discussed the information with my mother. The doctor did not come in to discuss anything. Instead the nurse, who was very unfriendly and who fought with my mother about blood test results that indicated that my blood clotting numbers were1.1. Given that I am on Cumadin, my therapeutic range should be between 2-3. The nurse insisted that this 1.1 was perfectly fine, which in fact, is dangerous for me. When this INR number is below 2, I am at risk for a blood clot.

When I got home, I walked straight into a wall so hard that I hit my head and fell down. My mom was so upset because she believed I should never have been released, and I agree. When my mother informed the doctor that I was prescribed the LDN to treat my Behcet's, the doctors weren't too forthcoming about believing this. I think that they assumed that I was taking this medication in order to comply with a rehab program of some type because I was addicted to pain medications. This is ABSOLUTELY not the case, and I have multiple doctors, including my pain management doctor, who can vouch for this fact. My mother requested that the doctor contact my PCP to determine the correct course of actions, which like I mentioned previously, usually means admitting me for observation and continued treatment in order to reduce the side effects of the medication reaction. The doctor did not contact my PCP.

I apologize for this being such a long post, but this was an EXTREMELY traumatic event for me. I was so excited to try a treatment that was supposed to be low risk, and it ended up having drastic consequences. It was such a scary experience that I am still trying to process everything. Today I contacted the pharmacy and the prescribing doctor to inform them about the incident. I am going to file a formal complaint to the hospital about how I was treated. There were more specific incidents, but I will not go into all of the details. It is important to be an advocate for yourself because otherwise no one else will do it for you. My mother is in agreement with me and is completely supportive of my choice to move forward by contacting everyone involved.

I could discuss additional details about this experience, but then this post would be even more lengthly! I am going through so many different emotions....Anger, frustration, sadness, hoplessness, etc. I was totally let down by the fact that not only did this treatment show any promise, but it resulted in an extremely dangerous circumstance. People can die from going through this typie of withdrawal. I am so glad to be feeling better, don't get me wrong. But now I need to advocate for myself so that this doesn't happen to anyone else. I believe the prescribing doctor was neglectful in that he did not examine me, didn't take blood, failed to contact any of the 3 doctors involved in my case. He should have AT LEAST contacted my pain management doctor to determine whether or not she thought it would be safe for me to take LDN in conjunction wtih my pain meds. I should not have been given this medication and been told that there would be absolutely no interaction with anything and that it ws perfectly safe. To try and wrap things up, I feel that I was treated unfairly by multiple parties. This is the one hosptial that I go to as it is close by and I often need to be hospitalized when complications occur from my disease. I strongly hope that I was not labeled a "drug seeker" or "addict," as this will remain in my record and will complicate things every time I seek treatment there. I understand that there are many people in the world who suffer from substance abuse problems, but I should not have been judged without the doctor obtaining adequate information regarding my case. All he had to do was contact my PCP, and look through  my previous health records to learn that I take my medcations as prescribed.

If anyone has any ideas as to what they think I should do moving forward, please let me know. I am not sure if the doctor who prescribed this can be sued or not. I was told by a friend that unless you have lasting damage from being mistreated. I am really confused and angry and saddened by what happened. Thank you for taking the time to read this long post. I am so thankful for my wonderful mother who is always there to take care of me. I don't know what I would do without her. I hope that I am able to get some sort of closure with this incident, by informing the risk management/patient advocate at the hospital of the circumstances around this visit. Like I mentioned, I could potentially have some kind of head trauma that was completely ignored by the doctors/nurses.

Please feel free to let me know if anyone has experienced something similar, or how you would proceed. :)