Ottawacluster

Members Pip 1 posts 0 warning points Posted Yesterday, 11:18 PM Hi forum, very glad to find this website! After reading the various stories, I feel like many were like my own situation. So here is my story...very long and not especially extraordinary, but I thought to include all details in case it helps any other newbie someday (e.g. hey that is just like me). So sorry for the length of post. I started experiencing clusters when I was 18yr in my first yr university, in spring (March-April) several times a day lasting for 4-6weeks. Unbelievable pain (always right side, started with shadows as I now know them to be called, then jaw and neck pain, then spreading to eye socket, felt like a tapered wooden peg, the kind to kill a vampire with, being hammered in to the eye socket and out through back of skull, very bad), I took OTC pain meds (tylenol overlap with ibuprofen) but did nothing. Saw family doc, thought it was allergies, sent me to dentist but nothing there, sent me to optometrist (since I mentioned eye pain) and got crappy very low prescription. By that time, the cluster episode was over. Then I did not have another for a few years, then came back again with same pattern and same thing (tried OTC paid meds, saw family doc, blah blah, run-around until cluster over. Then forgot about until next one, again 3yrs later again in the spring, very painful and was done university and working outdoors on the road travelling doing environmental tests out in the field, so could not call in sick, suffered through for the episode of 4-6 weeks. (Note: for the theory of low testosterone and low vit D...I am not sure about, I mean I was outside in the sun almost always during this work for 15hrs per day, and I was in my early 20s working out in gym like crazy, really good libido, so think my vit D and testosterone was fine, but was getting crappy sleep so totally could buy the upset biological clock connection) Same pattern with episodes every 2-3yrs typically in spring for 4-6weeks with max frequency/day in middle of cluster, just suffered through and probably almost OD'ing on OTC pain meds which did almost nothing. Then in my mid 30's when I was on parental leave for my first child and was the only care provider at home, when a cluster epodes started. I knew I could not watch this baby with multiple attacks daily, so went to ER hoping they could figure out. This is in Ottawa, Canada, I went to a larger hospital which is part of University of Ottawa med program, so very good competent people up to date on everything. I had done some homework by now and had suspected my headaches were CH. I had taken very good notes over the years and tracked the dates and duration of he cluster episodes the location and type of pain, etc. So told ER doc this and they thought for sure CH, put me on O2 in the ER and tried lidocaine into nasal passage? ( I read this is one potential tx to abort, but not really first line treatment, anyway did not really abort attack which was almost over anyway). Anyway, good ER doc called neurologists office while I was there to get me expedited appointment for following week (would have been several months) and gave me short term script for verapamil 240mg x1 daily in the mean time which I started right away. So week later saw the neurologist, and after describing history, they said it was almost certainly textbook CH, gave me refil script for verap at 240mg @ 1x/day prophylaxis and also O2 at 7L/min for aborting attacks. Woohoo! almost 20yrs of suffering and got a diagnosis!!! I am not crazy, and some sympathy for the pain from a neurologist head-ache specialist!! I found the O2 worked pretty well to abort but was just learning so probably started too late after attack was in full swing so I missed maybe 1/3 to 1/2 of attacks during that episode. However, I found the verapamil seemed to reduce the number of attacks per day, so this was my best episode ever, and after over I stayed on verap for another couple weeks then got off it. When my next cluster was starting 2-3yrs later with onset of low pain shadows later it signalled me to get on the verapamil and order my O2 before the full blown attacks, so was much better prepared for that episode. However, I noticed that the vera and O2 did not seem to be working as well at last episode. I failed to abort a few attacks and they were extremely, extremely horrible, my worst ever. I honestly felt like I may have had brain damage after them the pain in the skull was so bad, I know this is not the mechanism, but was so painful I felt stunned for hours after. Anyway, after this episode I saw the same neurologist for a follow-up and she decided to split the vera into 3 doses/day of 80mg each and up the O2 to 12L/min and also give me prescription for injectable sumatriptan (6mg/dose, 2/day max) for back-up in attacks. I filled these prescriptions in prep for the next cluster episode to start in 2-3 years like clockwork. So just started my predicted next cluster at end of March so about 2weeks into this one, hopefully only 2-3weeks to go. On the 3/day vera at 80mg each and have my O2 with various size of tanks, E for taking to work, Ds for home, but also getting an M since the 12L/min is really using it up fast at 15-20min each use. My regulator goes up to 15L/min so after reading on-line I am trying that vs 12 since I failed to abort a couple of attacks with O2. In these situations I tried the injectable sumatriptan which has worked almost immediately in both cases - within a minute of injecting I felt the pressure in my head drop and pain almost disappear by 5-10minutes and no repeat attacks for rest of the day. I feel ecstatic to have found a second line method to abort attacks. Just so happy to have a few methods to deal with this bloody thing. So that is my story. Some observations of my situation: - started in late teens, I am male, mother has bad migraines, I suffered several low grade concussions when I was playing contact hockey (got knocked out once for couple of minutes), cluster episodes almost always in the spring (March-April) lasting for 4-6 weeks with attacks happening 3-4/day at peak of cluster and each attack from 45min-2hr. Could be coincidence but I feel like the attacks sometimes are triggered by consumption of alcohol, but I avoid anyway during cluster. - currently using verap prophylaxis (80mg x3/day) and for aborting attacks I am starting with O2 (15L/min) at very start of attack for 15-20minutes and then sumatriptan s.c. injection (6mg) if O2 fails, so far tried sumatriptan twice (about a day apart) and worked brilliantly so far. Will see how rest of this cluster episode goes. Hope to not have to use the injections too often as $$$. - so over course of my 20yr CH history, I am overall better than ever with a neurologist who knows CH, and reasonably good treatments, however always looking for improvements Q1. Any advice/tips/tricks to improve upon my overall treatment? (I saw many people use MM/Vit M...not option for me at this point while working and with young kids at home, so any non-MM ideas are welcome) - e.g. up the O2 flow rate? - e.g. up the verapamil daily dosage? Q2. the last time I did O2 I tried rapid & deep breathing method as per the O2 guidance doc on this site, my fingertips started vibrating and had a "buzzing" feeling, kind of freaked me out. I failed to abort attack anyway with O2 this time and used sumatriptan. But I wanted to ask if anyone knew about the tingling/buzzing? Q3. any issues with using the sumatriptan injection right after O2? I assume not since that is the intended use but I just wanted to check. PS. I sent a suggestion in the contact form to add my neurologist to the list of CH docs for Ottawa. If anyone wants the docs name, send me a message separately. Like This