Hello! I literally just signed up. I'm 42 years old and have had clusters since I was 22. I don't know if mine would be considered chronic or not. I never go a full month without one but most times they last less than a week. About one every 3 years I will get a massive cluster lasting upwards of 45 days. I own my own business and do not have insurance so I'm only using acute treatments of immitrex 100mg. Sometimes 3-4 doses in a single day during the "massive cluster".
I don't experience any stomach issues or suggestive issues other than burning in my stomach from immitrex. This COULD be a small ulcer and does bother me with other medications including OTCs.
I got stiffness in my jaw and neck very badly during an attack. So badly that I don't move my neck or talk if I can help it. My sinus on my affected side sometimes swells but other times I get runny nose. Almost always my eye tears uncontrollably. During massive attacks I feel and look like a stroke victim due to swollen sinuses and sagging mouth/eyelid on affected side.
I'm not sensitive to noise but light is horrific. I seek cool dark places to hide away from everyone. I will turn on the TV but no phone or computer. The TV is on so I can see as it's just about the only light I can handle.
Everything I read says we shouldn't be able to lie down but I do. I take the Immitrex (pill firm so long wait for relief) then take a shower hot shower. *hot showers numb the pain as apparently your nerves can only Transmit just so much pain at once.* then I will lay in bed with my eyes closed until the pain ends enough to function or I fall asleep.
I could not function well enough to be a productive part of society. I was lucky because I was able to own my business which is run by myself and my family. When I can't function they cover for me. I hope you all have that level of support from yours.
Last thing for now as it may or may not relate to you: with digestive issues. My daughter is diagnosed with chronic migraine and cyclical vomiting disorder. Cyclical vomiting disorder is directly related to migraines and was described by her neurologist as abdominal migraine. You may want to discuss this with your neurologist if they are unaware of the digestive issues.
