In general, I focus on research and studies. I like data and facts. However, sometimes I learn really interesting things from discussing with other AN warriors. I have not yet found a study that describes the issues with heat sensitivity and dehydration that I and others have experienced. When I have polled a group of AN patients, a significant number have told me they have experienced these issues. I think it is a fairly common experience for those who have this diagnosis.

I have been very sensitive to heat for a long time. I have not loved heat as an adult and often feel overheated in weather that others enjoy. I always assumed that I was just a person who ran warm and that it was just a part of me, or even a part of a different diagnosis I have.

I also need to drink water regularly. I travel literally everywhere with a water bottle and at least 32 ounces of water. I have to sip on it all the time, and I find I get stressed or anxious if I am concerned I won’t have easy access to water. My husband bought me the “emotional support water bottle” sticker because we often joke and laugh about my need to constantly drink water.

You can imagine my shock when I discovered that many people diagnosed with Acoustic Neuromas experience issues with overheating and dehydration. Some, like me, experience both. Others just one or the other. For some people, it seems pretty mild. For others, it can get pretty extreme. I know someone who has to really plan out hydration when being very active or they feel really horrible.

I have spoken with someone who reported that their doctor believes this issue arrives from changes to our saliva production because of impacts to the facial nerve by the tumor. That makes a lot of sense to me, I do feel like my mouth does get fairly dry. I hope soon there is more research and information on this topic. I don’t think most AN warriors are aware of this and its impacts.

In the meantime, keep an eye out and see if this is a weakness or struggle for you. If you realize it is impacting you, preparing for cooling and hydration needs can really help you have a more successful experience. You can join me in becoming a proud member of the “emotional support water bottle” club.