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About LilacOutsideMyWindow

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    at this point in my life

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  1. I still have episodes, but they have slowed dramatically. I went from "rapid cycling" -- which for me was on average 4-5 episodes per year, to 1-2 per year. Still too many, honestly, but less.
  2. Yeah, the horrible awful, no good, can't stand it, pain (without aura this time, so maybe "just" a headache due to weather) started yesterday afternoon. I am on soooo many meds, I'm limited in pain relief, so I took some tylenol, had some coffee ('cause caffeine helps mine) and went to bed. It's still here, along with the snow. Ow.
  3. good luck with the botox. topamax *was* working for me, so I'm still on it, but on a slightly higher dose. Another thought to throw out-- I also had a sleep study done a couple years ago - found out I have sleep apnea, which was aggravating my migraines. For awhile they had me on just oxygen at night, but I wasn't sleeping the best, so another sleep study, now trying CPAP, get yet ANOTHER sleep study next week, to determine if we need to combine the 2 (oxygen with CPAP). I'm thinking we do, because while I'm not in migraine territory yet, but I'm having headaches, and I don't like that, it makes me nervous. My last migraine came after a few days of "regular" headaches. ETA -- oh! And, I started having complex migraines (the kind that make you think you're having a stroke) so we added nortriptyline recently, and that has helped me too, but not as much as sleep has.
  4. Cutting back makes sense. I'll start today - or I already have. Decided to NOT to some things I have been doing first thing upon waking. The good news is that didn't spark any anxiety! So baby steps
  5. to further confuse matters -- I've been sorta hung up on this sleep thing. I was on O2 at night for nearly 2 years for what they originally were calling sleep apnea NOS. then a different sleep study changed my diagnosis and they put me on a CPAP a couple weeks ago and took the O2 away. I haven't felt right since, and have been wondering if I needed the O2 back, but was concerned I was just being overly anxious... well I got a call a little bit ago that I need to have another home sleep study. the dr's are also tracking my sleep info (CPAPs are cool these days, you can track all sorts of info from them!) and it seems I may need the O2 back, maybe with the CPAP...or not. Won't know for sure until the sleep study is done. -- but it means I'm not the only one who thinks things are wonky, and dammit that just feeds the beast!
  6. Good thoughts! I don't currently have a therapist, but I'm sure my old one would take me back if I need her again - she's awesome like that, and in the same practice as pdoc. I'll definitely get pdoc's read next week, too.
  7. Actually, yeah, the dr *did* ask me to take my blood pressure, 3 times a day, every day -- and I'm lucky if I remember to do it twice (forgot yesterday until afternoon, so it only happened once) because I tend to have *low* blood pressure, but my pulse is sky high from the thyroid thing so the beta blocker is trying to keep that under control, without making my blood pressure too low...and one day it was crazy low so they sent me to the ED where I had to have all sorts of tests and stuff and then they cut my dose in half and lectured me...ACK!!! I really am trying to be chill, honestly. I just want to know where that line in the sand is. You're probably, right though, that I'm tiptoeing on or over it, and I need to be aware of that. Crap. Deep breaths. This being sick stuff sucks.
  8. I'm starting to worry about my level of worry! I have numerous issues going on right now, and I don't really trust the medical system to stay on top of them, so I track a lot things. Like, I track how my CPAP therapy is working, and I've been having spells that feel like weird blood sugar issues, which can happen w/thyroid issues (that I've been diagnosed with having) so I bought a cheap monitor and am keeping a loose track of that, too, now. And I'm on a beta blocker, so I take a couple blood pressure readings a day. And I have had diverticulitis in the past, and have recurrent pain in that same spot, with continuing diarrhea, so I track those symptoms for signs of change. Interestingly, all this tracking is generally NOT making any more nervous or anxious, for the most part, it just frustrates me, because there seems to be no easy answers THEN there are the moments, like today, when my radar pings and I *do* worry. I'm not freaking out - no racing heart rate, no shortness of breath, none of my "usual" anxiety symptoms, just a "crap! now what does THIS mean??" feeling when I saw something in my tracking that I didn't like. But I do wonder - how will I know when/if I've crossed the line? When does "ok" amounts of tracking become too much? When does "normal" worry become too much?? how on earth will I know the difference???
  9. Hiya!! Oh I'm soooo happy to see familiar faces! I just updated my sig to show current meds, too.
  10. so sorry to of dropped off like I did, but well...crazy, right? No need to forgive or forget, I just hope we can move forward. What's new? I finally filed for disability this week. I haven't held a "substantially gainful" job since '07, so it was past time. I think I'm hypo/manic, BUT I'm also hyperthyroid at the moment, so who can sort that shit out?!? I just know I'm a wreck. I see PsyCNS again soon. No psych med changes recently, because all sorts of other meds are changing. Like propanolol for the fast heart rate, but it has to be low enough to not drop my blood pressure too low, or else I pass out. Fun times. I've been having complex migraines (the kind that look like strokes/TIAs) and my last MRI showed some small bright spots - "normal" if I were 70+, but at 38 it may mean prior strokes. I'm having sleep apnea - both central and obstructive. So I'm on a CPAP machine. That's loads of fun. I had a spontaneous DTV back in '12, and have been on blood thinners since, as I have factor V Leiden (which may be contributing to the maybe strokes). I had a bout of cecal (right sided) diverticulitis a year ago, the antibioitics for which lead to C-diff, and I've had diarrhea ever since. Just had my 2nd colonoscopy for that. They can't find anything wrong. Oh, and I was hypOthyroid just 15 months ago. This hyperthyroid thing is brand new. I see an endo next week about it. all in all I'm all freaked out, keep thinking someone is going to diagnose me with Munchhausen
  11. I use findingoptimism.com I have it on my phone, too. I like that I can customize it (I added a section called "mixed mood" for instance).
  12. Not yet today, but yesterday I went iceskating for 2 hours, and I feel it today. And I've been good about walking 4+ times a week, either 1 mile with steep hills, or just over 2 miles that are more flat. Yet I have a whine - I've GAINED weight in the past month. Won't stop exercising, but man, is it ever a bummer especially as I'm already "obese"
  13. I had horrible word find issues when I first start lamotrigine, and they lasted what felt like forever. However, I am now a little more than a year out on it, raised the dose over that time to 200mg, and in college, and the word find issues are MUCH less. I was terrified that I'd fail school because of the lamotrigine stupids, but that didn't happen, and now, I don't even notice - either I've found ways to compensate, or it isn't effecting me as much any more. I'm also really really glad I kept going through the stupids, because despite some hypo/mania this summer (which I mostly blame on stress - I lost 3 loved ones in 5 months) I have been amazingly stable. And, for the first time ever, since being on it, my hypo/mania was euphoric -- they were ALWAYS dysphoric in the past, so this is a HUGE change for me, and kept me from self harm. So that's my take - if it's working, you may be able to get beyond the stupids, and it may be worth it to power through.
  14. Hmmm, I love abilify because it works quickly for me, but the doses I need to come down often result in akathesia (which is why I'm now on a low dose to try to keep things level). And I see you've tried it in the past, along with other AAPs so...eh. And yes, every episode ends. They do. I know it doesn't feel that way in the middle of one. If your body is winding down, can you try to get some regular sleep going? 6 hours is my minimum, and sometimes I just have to lay in bed, in the darkest place I can find (maybe even wearing a sleep mask) and work on mindfulness. I tend to count my breaths - 10 breaths, then restart the count. Over and over, letting other thoughts flit through, but not allowing myself to travel down any rabbit holes, just keep concentrating on breathing and counting...typically I fall asleep at some point, even if not for long enough,, but the forced rest in bed seems to help a little.
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