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Everything posted by Ganuchi

  1. That sure is the truth. I am almost positive my vote didn’t count last election. I voted absentee here in PA because I was away for a few days. For the first time ever when my mom went to vote she did not see my name under hers as the list is alphabetical and we have same last name. She asked and the lady was choking trying to come up with an excuse. My mom had a shit fit in the place but it didn’t make a difference. It’s ridiculous I don’t think people understand that how we vote directly impacts our healthcare. Can you imagine what socialized medicine would mean for us cluster heads
  2. I wear hair bandeaus as a mask when I need to cover my face. That way it just sits around my neck and I can pull it up when necessary and it’s not nearly as irritating as those around the ears (at least for me).
  3. They need more people who think like u in CA……Philly isn’t quite as bad but I fear we are on the way We should figure something to identify as being cluster heads
  4. As far as how to stay happy on days like today (September 11) I realize how fortunate I am. CH may be AWFUL but when we consider what others went through on this fateful day our own ailments seem less important. May God Bless America
  5. I agree with Fun Times that some days just suck. I was having a good day yesterday…..even got home from work at a reasonable hour for a change……decided to do an OnDemand yoga……remember about 5 minutes of it before I just started rolling around my living room punching the carpet and screaming……must have passed out because came to on my yoga mat a while later…you just never know sometimes The Benadryl might really help you BoscoPiko……I think I was triggered by our weather beginning to change already here (opposite of you in CA with your wildfires) in the Northeast corner Keep up your D3 and pray for some relief……
  6. I agree that CH needs more attention……the majority of people (even healthcare workers) don’t know what it is…….after you explain they then assume it’s migraine It’s easier said than done but don’t let it steal your life. There will always be awful days but all we can do is try to move past. Your air quality issues are probably making this worse so hopefully CA can figure the fire thing out……maybe a humidifier will help (I sleep with one and it has made a difference). Hang in there…..your cat and your horses need you!
  7. OMG….so glad you gave them a home! We have considered a “barn buddy” cat for my work but the lady at the shelter said we have to keep it locked up in a cage for two weeks so it learns where it’s home is and I thought that was kind of cruel…..maybe we will re-consider!
  8. How cute…..love the eyes! Funny that we named ourselves after our cats!! I hope things turn around for you but I do completely understand the despair….we all feel it at some time or another And yes @spiny…..Ganuchi lives the life - she is quite regal! I ask her all the time if we can trade places for at least a day but she has no interest in such
  9. Hope you like cats…..this is the real Ganuchi…….my best friend for the past 15 years She always puts a smile on my face so hopefully she can do the same for you Please take care and don’t let the Beast get the best of you
  10. It was awful……we say we have seen each other at our worst……he sees me through CH and I got to sit with him for 12 hours with his face in two and then the three subsequent surgeries to fix him all up The plastic surgeon told me all he could say was that he had never seen anyone so jacked up!
  11. My husband fell at work a few years back and literally split his face in two…..they had to put needles in his nose to do the original sew up before the rhinoplasty to actually rebuild his nose/face. He was SCREAMING from the pain of needles in his nose. It was awful I don’t think I could bring myself to go for it
  12. It was actually a new experimental treatment specifically for CH that I was reading about that showed promise for those willing to endure it….. If you google “Botox for cluster headache” you should find the article from “medical daily”…..tried to put link but it wouldn’t work (probably user error….LOL)
  13. As another chick in her 40’s I considered the Botox too, but my fear of needles outweighs the potential benefit. I did read recently about success with Botox for CH but not traditional Botox. Apparently they stick the needles up your nose to hit nerves in the head……the thought turns my stomach so I would probably have to be knocked out to even consider that……..but for those less squeamish it might be an option
  14. I too get “spikes” which I consider shadows which will jolt me out of my seat. I will generally just close my eyes and take some deep breaths for a few and then continue on with my day. Sometimes it’s a signal of the Beast awakening other times no. I have also experienced the odd side switch too. And I drink black coffee too…..if there’s milk or sugar in it then it isn’t coffee in my book…….LOL
  15. @FunTimes…..we must “tawk” the same way with our loooooong vowels-LOL Went down South once and no one knew what the hell I was saying! Best of luck with your Beast!
  16. Thank you Fun Times. Very helpful! P.S. I am sure there are lots of “Delco”s (from your location) but we might actually be neighbors. If so, nice to know I am less alone!
  17. You aren’t a jerk - just a cluster head in excruciating pain. I am sure the wildfires and poor air quality are contributing to your suffering. I am in the NorthEast but when we have weather issues (pressure spikes and drops, blizzards etc) it definitely plays a role. You may want to consider buying an air filter for in your home. My office at work is very stuffy etc and it has helped since we put a filter in to try to clean up the air. We all feel this way in the midst of it. My last episode all I could think was trying to make my way into the kitchen and find the knife block to use a Henckels to put myself out of my misery. Be well and hang in there!
  18. I wish there was a one size fits all answer to this question but these forums are a Godsend. I am episodic so in all honesty it is probably easier for me and I find being grateful for my CH case compared to many others helps me through because my heart truly breaks for those who suffer much worse. My husband is very supportive so that makes a difference and I try to focus on my hobbies of working out and reading (obviously reading is not possible when the beast is lurking). My job keeps me very busy too so maybe trying to stay busy can help you? Maybe you can find other clusterheads where you live? I personally never met another one but would like to. I wish I could help more but wanted to reply so you know you are not alone.
  19. Wish you well Riss! We (women CH) definitely take a burden. I was in ER once (away from home unfortunately) screaming for oxygen as doc was telling me she was going to give me migraine cocktail because SHE KNEW migraine was my problem. Obviously, the cocktail did nothing because it’s f-ing CH! My male cousin who suffers from migraine along with epilepsy deals with the opposite as though men can’t have migraines as jon019 alluded too. Headaches should not have gender roles…….the beast is bad enough!
  20. Thanks Jon019! Whenever I have mentioned hormonal fluctuations triggering CH I have generally been looked at like I was psycho. Guess I shouldn’t have believed the lit saying CH was mostly men, but I do think there is a tendency for some reason to put women under the “migraine” umbrella. Probably because most people don’t understand that CH is not the same. Also, fluctuation of barometric pressure does a number on me too We are on to something here
  21. Hi Riss I can only share my personal experience but I have been on Ortho Cyclen birth control pills for 22 years (yes - you read that correctly-LOL- knew from a very young age kids weren’t for me). Anyway, when I used to take the brand of the Ortho Cyclen my CH was worse. When they discontinued the brand and I switched to generic “Estarylla” I felt like it actually improved. The Estarylla is higher dose though which may not be what you are looking for and you very well may find your own experience different. I get more episodes and shadows around the time of the inactive pills and as fluctuate back to actives so I have often wondered if there is a hormonal aspect even though CH is pretty male dominant. Don’t know if this helps but I wish you well as you battle your beast.
  22. Thank you! Finally got my paper script in the mail because my visit was telehealth. Luckily there is a medical supplier across the street from my work so hoping I can get it quickly Probably going to buy my own regulator though because script only written for up to 15 I really appreciate all the knowledge from the site!
  23. Hi Amy123, Just want to say that while I do not experience back pain, I often get a weird tingling pain of sorts in my left foot (opposite side of CH) when an attack is imminent. I was told before it wasn’t related but I know it is because it’s the only time I get the feeling and it usually hangs on for a bit once the episode is over………CH is just a little different in every one of us I guess
  24. Perfect! Thanks for the info May the Beast lie in rest for awhile!
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