Looking for input from others - also perhaps my lesson learned will benefit you also.
In the past few days have had my first need to have narcotic pain relief administered since diagnosis of Kennedy's 15 years ago. I had always known that this form of medication could have the potential to cause throat constriction due to the bulbar issues that most of us deal with to one degree or another. Not having real-life experience to share, and the Dr's and nurses in the ER as usual having no experience with KD, my efforts to convey to them what could happen went unheeded in the urgency to give me the much needed relief from the pain which was a "9" on the 1-10 scale. They administered a "Normal Dose" of Dilaudid which is a Hydromorphone. They said it was chosen over Morphine as the volume of drug needed for the same effect is much smaller - perhaps causing it to take effect sooner?
Sweet relief...the pain goes away within two minutes of the IV injection. But as the pain gradually subsides, the opening of the airway in my throat restricts to a corresponding degree to the point that I am having difficulty breathing. It was sort-of like me having one of my chocking episodes (Laryngospasm) but never being able to get past it and back to normal breathing. The doctor and nurse all seemed quite surprised at this, even though I my three children who were with me had gone to great extent beforehand to let them know that I had Kennedy's and that something like this could potentially happen.
After all was said and done, and I was being discharged, the Dr. suggested that I let all future medical personnel know when they ask about allergies to medication, that while I am not allergic to narcotics, that I do have a severe respiratory reaction which specifically translates to my throat closing off and I having difficulty breathing. He says that should get their attention. He recommended that in the future I stick with non-narcotic pain meds (ie Tylenol) if at all possible, and that if a narcotic is needed to only allow that to be administered in a medical facility under supervision.
Well, that would be all well and good and lessons learned except for the fact that 3 days later the pain returned. The Prescription strength Tylenol I was sent home with the first time did nothing for the pain so back to the ER I went. (Why is it that ER visits always happen in the wee hours of the morning?)
On this this second visit, they went with Morphine but only a half dose. This did have some closing of my throat effect but not to the level of being problematic, so I declined the second dose not wanting to risk further airway restriction. However, the half dose did not fully take away the pain either. This time I was sent home with Lortab (Hydrocodone tablets (1-2 325 mg tablets every 4-6 hrs)) Which has kept me pain free with no throat constriction. So in deference to what the ER Dr’s had said, all narcotics will not have the same effect on my throat.
So while all of the above knowledge will certainly be helpful in empowering me in any future need of pain management, it is frustrating to have to go through the trial and error thing to figure it out. I would have to guess that each of us may react differently to different meds. so I believe the best course of action is to ask for partial doses and work up to a higher level if needed until the respiratory comfort begins to be compromised.
Also interested what others can share about General Anesthetics and experience with what precautions should be taken in these situations.This message has been edited. Last edited by: Bruce,
I forgot to mention that my pain had nothing to do with KD
Location: south carolina
Wow your ER experience sounds really scary I am just now having the periodic dry drowning episodes, and am now just getting used to trying to relax during them.
How did they help when your throat was constricting?
I have periodically taken ativan for anxiousness without issues this should not give problems should it? Hydrocodone is ok to take for pain?
DB, thanks for sharing your experiences. I hope others will respond with their experiences.
Thanks for sharing this story Bruce.. You are always helpful.
I did not know narcotics can restricted airway.. I was thinking of getting colonscopy recommended by my GI MD at age of 46. I hesitated because of my KD problem. If narcotics can cause this trouble what happen to simple outpatient procedure with anesthesia?
I take Xanax for anxiety or panic attack as needed, its a Benzos medication like ativan. Its ok but not too much. Simple Yoga stretching and medication helps me relax. My Neuro MD prescribed ambien for sleep too only as needed too.
John K Lee
I have had a colonoscopy in the past 2 years and had no problem with the anesthetic they administered. I did not think to ask what it was.
From my experience I retold above, I believe I learned that just like the level and variety of symptoms we with Kennedy's experience have a wide range of severity and combination, so to likely is our respiratory reaction to narcotics. Best to be aware of the possibility and use whatever experienced we do have to mold our course in the future.
[QUOTE]Originally posted by dorsey:
How did they help when your throat was constricting?
They brought in a PPAP machine, which I believe is just an industrial/hospital variety of a CPAP used for help with Sleep Apnea. I told them it would not help me, but they insisted and then got frustrated when I told them to take the mask off. I have Sleep Apnea (I believe very common with Kennedy's) and had tried the CPAP for a period of time without success. Always felt like I was in a wind tunnel and put me under stress rather than relaxing me.
The only other thing they did was turn off the lights and leave me alone (checking on me occasionally and monitoring my vitals including oxygen levels remotely) so I could relax and not be stressed out by having others in the room and basically waited for the drug to wear off which it did in about 2 hours.
On the KDA website, there is a page about risks of anesthesia at this link: http://www.kennedysdisease.org.../76-surgery-concerns
There is at least one scientific paper that is about the risks of anesthesia for men with KD. It concludes:
The abstract for that paper can be found at http://www.ncbi.nlm.nih.gov/pubmed/19247761
and the full text (not the abstract) can be found if you search.
In my opinion, every man with KD should keep a copy of that scientific paper handy, to show to the doctor or anesthetist when anesthesia is contemplated.
Last but not least, a couple of the posters above mentioned colonoscopy. It is worth noting that anesthesia is absolutely not necessary for a colonoscopy, as the procedure is not painful. In fact, the U.S. is the only country in the world where anesthesia is routinely used for colonoscopy; in other countries, such as Japan, in Europe, South Africa, etc., anesthesia is not used. For a man with KD, possibly the best strategy may be simply to avoid the inhaled anesthstic, as it is not worth the risk. Discuss with your doctor and anesthetist after showing them the article mentioned above.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614