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ClusterBusters

Jilly from Philly

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  1. Jilly from Philly

    Stepping on toes

    Hipshot...you live up to your name! I appreciate your uncensored rant and think from the sound of it it was a well-deserved verbal tsunami. (I also thought the newly edited version was pretty hilarious). Glad to hear the waters have receded and you are back to sunning yourself in your usual optimism and spirit. You're an inspiration...coming from someone with a similar inability to edit that she wouldn't trade for all the BOL in the world.
  2. Jilly from Philly

    verap, anxiety, antidepressants and other fun stuf

    Thanks, Ron!
  3. Jilly from Philly

    a potential new option

    Got the script! I actually had a great doc's appointment; he was genuinely concerned, which I appreciated. O2 hasn't gotten delivered because of the holidays and now we're getting dumped on with snow. Hopefully they'll make it tomorrow, if not then Tuesday. But it sure is peaceful and lovely outside. Managing in the meantime with the triptans...the doc hooked me up with some free samples and wrote a script for Sumavel needle-free injection. Thought my cluster was breaking for a couple days, but then they crashed the Christmas party. Dropped from 360 mg verap to 240, waiting for the O2 to keep dropping and gear up for the big bust. I don't know how I'm going to fare going back to school after the winter break while trying to wean off the verap...feeling a little tentative but curiosity and optimism are winning out and it's onward, HO (ho ho)! I'm concerned about the 10 mg Paxil I'm on interfering with the bust, but I'm going to give it a whirl. I will definitely keep everyone posted on here on how that goes. Getting off of that is definitely a long-term goal, but it's actually incredibly difficult. I've tried several times, and you'd swear you were coming off of heroin. Ever seen Trainspotting? Same general idea: fever, electrical surges in your brain, crying jags...very nasty stuff. Anyway, thanks for asking, Jerry. Hope you and your family had a great holiday. How is your daughter? Send me a PM so we don't hijack this thread anymore than I already have.
  4. Jilly from Philly

    a potential new option

    I'm with Veggie here. Wondering if anyone has had a chance to try this. I would guinea up on this pig if it wasn't for that last pesky dose of Paxil that I'm on...seems to interfere with everything. Apparently, serotonin receptors are like air traffic controllers in the brain.
  5. Jilly from Philly

    Alcohol as a "trigger"

    Burgers, beers, bourbon and butts (ciggies, that is...but depending on how the bourbon and beer go down, I could appreciate some other butts too). ;D Oh, what I would give...
  6. Jilly from Philly

    verap, anxiety, antidepressants and other fun stuf

    Pops, "Wish I knew more." Sounds like you know a lot. Great idea on calling Miller Med ahead of time, will do that tomorrow, appointment's on Thursday. Tired and hoping to get some sleep tonight. Fingers crossed. Made it to work today and found the kids to be surprisingly energizing. Maybe that's because I've given myself a free week before the break and we're just watching Nightmare Before Christmas. (I know, I know, bell-to-bell instruction, but I'm trying to cut myself a break). Great movie. Understanding is understanding, blood relative or not. In the spirit of the season, I'm counting my blessings and giving thanks. So grateful this site exists, buster or not. Buster...funny word...I imagine the Ghostbusters theme song playing when I come on here.
  7. Jilly from Philly

    verap, anxiety, antidepressants and other fun stuf

    I'm in the Philadelphia region; perhaps I should go with them... Sound advice for sure, but here is what I see as a serious conundrum: psychiatric meds can decrease your chances of a successful bust, right? So I feel like I'm in Sophie's Choice. I could definitely benefit from a handful of SSRIs right now (in the short term) but because of my past experience with them and difficulty getting off, I am VERY wary of going back up (am on 10mg of Paxil now). So I push push push through, but over the past couple weeks I've been very close to starting again, just so I can continue to function and work.... And we're back to the chicken and the egg. Treat the clusterheadaches and hope the depression alleviates, or vice versa? My instinct tells me the former, but conventional medical wisdom tells me otherwise... "When the bird and the book disagree, always believe the bird." -James Audubon
  8. Jilly from Philly

    verap, anxiety, antidepressants and other fun stuf

    Jerry, I'm getting redundant but thanks for all that information...and that was the shorter version? I'm heading to the doc on Thursday, and I plan to go in armed to the teeth with information. I am also (as you suggested) bringing some one with me, actually my ex-boyfriend who more than anyone knows the stark reality of suffering through this disease. Which brings me to an important point: the commitment you've demonstrated to your daughter is beyond heroic. I have a stable loving and intact nuclear family, but they have been limited in their ability to offer me support (hence the slightly awkward but necessary invitation to the ex). My family generally stays away from any and all topics involving these headaches and gets uncomfortable when I push the topic. Sometimes I hear myself trying to get people to understand, and I just sound so whiny and overdramatic, like I'm seeking attention when all I want is support. How frustrating when your immediate family and friends continue referring to your headaches as migraines despite the information you've printed up and provided them with.... So can I be your cluster headache adopted daugher? :-* On a practical note, I take it insurance covers this O2 set up, includind delivery? I'm a little concerned with the holidays coming up and a vacation planned that I won't get my set-up ready until Monday (my appointment is not until Thursday afternoon), but maybe these places will be open on Christmas Eve. Keeping my fingers crossed. Did it take a long time for your daughter's set up to get delivered? Thanks again for all the helpful info. I'm an English teacher, and you get an A+ for clarity and thoroughness.
  9. Jilly from Philly

    oxygen question

    That is one sexy oxygen tank! :-* I gotta tell mine to hit the gym or something...
  10. Jilly from Philly

    verap, anxiety, antidepressants and other fun stuf

    Really? Do you find that the oxygen helps alleviate depression? Thank you. Your daughter is a lucky lady.
  11. Jilly from Philly

    verap, anxiety, antidepressants and other fun stuf

    I am applying all the creative solutions I can to this problem: regular cardio, breathing techniques, yoga, and, most difficult of all, patience. My experience with antidepressants has been nasty, and from what I've read here they interfere with busting. I'm on 10 mg of Paxil, miniscule dose, but the last is the hardest to get off of. When I get off the verap, just going to try busting while on the 10mg because I don't want to send myself into the deep end. It's all I can do to stay sane on this dose, don't want to chance it. Hopefully it won't interfere. Feels like a catch-22, so that's my best solution. Seeing the doc on Thursday & pushing (harder) for a script; in the meantime, my dad (who's in medical supplies) got me a small tank, a little higher than 2 feet, and a regulator that goes up to 15 LPM...hopefully that is enough. Question: Do you wean off the verap (I'm on 360 mg daily) or go cold-turkey? That thought sends shivers down my spine...Sounds more like Halloween than Christmas. Dear Santa, I thought you were supposed to bring me PRESENTS in the middle of the night...
  12. 2nd time posting here, but have already gotten a lot of help, encouragement and tons of info...an oasis in the desert. With special thanks to Hipshot & Dallas Denny, I am in the process of getting my hands on some 02, and then I start weaning off the verap. In the meantime, went up from 240 mg to 360 a couple days ago (I know, pretty low dose) which nipped the slayers in the bud BUT woke up in the middle of the night feeling like my heart was pounding out of my chest and I wanted to crawl out of my skin...kind of like an anxiety attack but in the middle of the night? So I don't know if the CHs have started to fly me over the cuckoos nest, if its the verap (I had similar side effects when I started it the first time) or what but I do know it's really unpleasant...and I"m looking forward to getting off the stuff...though I'm bracing myself for these buggers to get really bad before I have the opportunity to bust. My anxiety is pretty bad in general right now and I'm feeling really blue about the headaches :'( but Ii'm hesitant to go on psychiatric meds because don't they interfere with busting? Considering the headaches are my biggest problem, treating them should take precedence over the mood issues...but I kind of feel like I'm losing it, missing a lot of work, feeling hopeless (which this website has helped me to combat). My brain feels really scrambled, can't remember things, can't concentrate, etc. Any feedback on these topics or encouragement is welcome. Thanks in advance.
  13. Jilly from Philly

    Hello all!

    By the way, can you get emails when people respond to your posts or do you just come back and check the site? Thanks again...
  14. Jilly from Philly

    Hello all!

    WOW! I can't believe how much information and support I got from one posting...truly amazing and inspiring (and now hip to the latest and coolest slang...WHAT WHAT! ) Stay tuned for more questions in response to all your postings. It's late and I'm backed up with work, but I'm looking forward to re-reading and responding to all the feedback, suggestions, explanations...Thanks! :-*
  15. Jilly from Philly

    Hello all!

    I'm a first-timer here and would love any help I can get. I'm 30, had CHs for 12 years (every since I got hit in the head with a golf club, but you should see the other guy ) and they've been getting worse with time. After several rounds of prednizone and a thyroid condition to thank for it, I found a neuro who told me "cluster head patients are easy to treat" ( :-?) and prescribed verapamil as needed at 240 mg. It actually did the trick for the first year, and I was on and off of it as needed and thinking I'd found a miracle cure. I recently tried to get off the verap after my killing season (usually October) and found I couldn't without recurring headaches. Now scarily enough I am at the 240 mg and the headaches have come roaring back despite of it. Because my neuro is crappy about getting back to me (seems to think I am overly-dramatic about how debilitating these things are and ) I've upped the dosage to 360 mg myself just to get some relief and precious sleep... BUT I feel like I am going down a VERY dangerous path though with this med, which led me here. Sooooo....any general input on my situation would be greatly appreciated. Some other comments/questions/info about me: 1. People on here refer to "busting" but I couldn't find what that really means...using psilocybin for treatment? 2. Every doc I've talked to about using oxygen has dismissed it and my efforts at getting it myself have been fruitless...any suggestions? 3. I tried eating an eighth of mushies about a year and half ago and they didn't help, so I didn't try again. Now I'm sitting on a quarter of mushrooms that's almost two years old...don't know if I could do anything with them if I wanted to. 4. I've missed a lot of work because of these bastards...do a lot of CH sufferers have to go on disability? 5. One of the most frustrating things about this condition is how little people around you understand it. Can I get a what-what, or at least some advice on how to deal with that unfortunate little perk? 6. I'm really having a hard time sleeping. Even when I'm not in pain, I just lay awake. PLEASE HELP! I already suffer from depression, and these headaches get me so down. I'm home on a Saturday night missing two Christmas parties because taking a shower to get ready triggered an attack. ...but I gotta say, the wide range of emoticons to choose when posting on this forum is pretty rad...and it seems like there's some very interesting, talented and bright people here, so I hope to hear from some of you soon.
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