Zac Posted November 26, 2011 Share Posted November 26, 2011 Hey all, this is my first post but I've been skulking around here and relatively active on CH.com... at least asking questions. I've gotten to the point where I clearly need to be considering busting; I could give you my history but it's unnecessary. Like most of the people who got to this point, I've basically been through most of the standard and less standard meds (both preventative and abortive), O2 therapy (no help for me) etc. Despite this being my first post I want to waste no time trying to see if anyone has any input on my current situation. When I was 15, I was diagnosed with Bipolar II and on a heavy dose of some meds for some time. I eventually got on Lamictal, got stable, and have been slowly weaning off for the past year. (I just turned 21.) I should be entirely off the Lamictal shortly, have no mania, no depression (other than normal day-to-day things). I retain a small anxiety condition that necessitates occasional IR Xanax... but that's about it. I have already spoken to my Psychiatrist about it very briefly, and he of course can't condone it and was wary because of my history. I was merely wondering if anyone on here that has a history of psychiatric problems has busted and been fine (because of the sub-recreational dosing) or if there's anyone like me who was, in the past, treated for any psychiatric disorder but is no longer treated anymore. I know no one (including my doctors) could give me a guarantee that busting wouldn't cause some sort of relapse but I do feel in a different place now than I did then... other than the damn headaches. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted November 27, 2011 Share Posted November 27, 2011 Zac, I don't mean to be a downer, but from what I've read it seems that busting isn't something someone with a history of psychological challenges should do. Particularly since it seems you have things under control. Just my 2c, hmm re reading I'm thinking it's more like a nickel. Wish I could say somthing else as we all know how CH impacts us all. Jeff Quote Link to comment Share on other sites More sharing options...
Zac Posted November 27, 2011 Author Share Posted November 27, 2011 I also feared that is most likely the case; it's just so frustrating because I've all but run out of other options. I don't want anything to do to impact my mental health but the medications I'm on are all wreaking havoc in their own ways and I'm getting fed up with it. I am also unfortunately chronic, so... no rest for the weary. :/ Quote Link to comment Share on other sites More sharing options...
apperception Posted November 28, 2011 Share Posted November 28, 2011 In current research with psychedelics, there is a clear distinction between recreational and therapeutic use (see www.maps.org ). It's hard to be certain about dose and individual reaction. If you can't find a therapist you trust for some support, at least be certain you have a very trusted other to accompany you through the experience. Give some serious thought to risks and benefits! Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted November 28, 2011 Share Posted November 28, 2011 I'm afraid I'm not well informed on the subject, so I can't offer an opinion with any sort of credibility. :-/ This got me to wondering though whether RC seeds could be something to try, since I and others have found we can just take a therapeutic dose before bed and get a better than usual night's sleep, without psychedelic effects, in contrast to mushrooms, where 1 gram can throw some of us into a state of sort of disorientation and there's more of a bad trip possibility....? Quote Link to comment Share on other sites More sharing options...
Bonkers Posted November 28, 2011 Share Posted November 28, 2011 I'm gonna 2nd the Jeebs on this one. Next to oxygen, RC seeds are the most innocuous of the really effective busting products that we hawk around here. The possibility that you might benefit from the RC seeds so far outweighs the chance that you might do any harm, that I'd recommend you give it a whirl. You need to 1st read as much as you can find on the subject until you're certain that you know exactly what you're doing. Then, you need to get a definite diagnosis of CH from a qualified professional. Then, you need to let him in on what you're doing. Give him a copy of the best article that you read. If he can give you an argument not to take the seeds that you both understand and agree with, don't take the seeds. If he can't, go for it. Just start small. Take like 10 seeds. Then up the dose by 10 every 5 days until you're up to about 70 or 80 seeds. Simple. Keep us posted. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted November 28, 2011 Share Posted November 28, 2011 ok, so I don't want to buck anyone's recommendations with the RC, but... From prior reading I've done that applies to all the halucinagenic substances: There's somewhat of a possibility that halucinagenic substances can trigger latent or previously resolved psychological issues. Not that the latent problem will only surface during the treatment, but that it will remain after the effects of the drug has worn off. I think similar to the way the chemicals help turn OFF our CH switch, they in parallel can turn ON a Bipoloar or similar switch. I certainly feel for anyone that's chronic. I don't think I could take being chronic at the pain levels my eposodic CH goes to. Jeff Quote Link to comment Share on other sites More sharing options...
Ricardo Posted November 28, 2011 Share Posted November 28, 2011 I wish I had a better answer, but I think the truth is, nobody knows. I agree that the RC seeds are fairly innocuous, but that does not necessarily mean it's not going to set you off. It does increase different brain chemicals for months at a time--we know this because of how effective the seeds are at busting peoples headaches for months at a time. I'm tempted to think that the seeds could actually help the Bipolar II, as it seems like the biggest problem is the depression....but that's taking quite a gamble with your brain. I truthfully do not know what I would do in your situation...but talking to your doc about the pro's and con's could help. Quote Link to comment Share on other sites More sharing options...
CHfather Posted November 29, 2011 Share Posted November 29, 2011 Zac, have you tried the vitamin D3 regimen that has helped many, many people? It seems to me that before you try something like RC (or another psychedelic) that might have problems associated with it for you, the D3 would be a very sensible thing to look into. For most people, it has some positive effect; for some people its effects seem quite amazing, ending cycles quickly, even for people with chronic CH. There have been a small number of people (two or three out of more than 80) who have reported that the D3 approach made their headaches worse, but that effect stopped when they stopped taking the D3 regimen. It's relatively inexpensive and easy to do. Here's a file that will tell you more about it: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Quote Link to comment Share on other sites More sharing options...
Zac Posted December 10, 2011 Author Share Posted December 10, 2011 Thanks for all the thoughtful replies and I'm sorry I haven't posted myself in quite some time on the thread. I'll keep everyone posted; I've ruled nothing out. O2 does not work for me, despite trying all the tips on the CHs.com oxygen info page. I realize that's sort of unusual, but it seems to be the case and it makes everything so much more difficult that it doesn't. I'm in the midst of the worst high cycle of my life and I'm actually being hospitalized Monday for a DHE infusion (my first time). Doc had been resistant to doing it up until this point during other high cycles because the DHE has never been successful in the ER as an abortive for me and he had also been concerned that even if it broke the cycle I still haven't found a preventative that's really working... or not for any extended period of time. The D3 Regimen is the next thing on my radar, but as doc recently put me on Neurontin and I'm still titrating up on that (as well as staying on my 720mg of verap for now), he wanted me to hold off on the D3 because otherwise he can't know for sure what's doing what. I've been on the Neurontin before to no avail, but it was with a neuro and not a HA specialist and they didn't put me on as high of a dose as my current doctor is willing to go, so there's certainly a chance that will help. The D3 regimen is the next plan of action as soon as he gives it the OK, depending on how the DHE infusion goes, or perhaps regardless. Fortunately, I have not quite gotten to the point where I've exhausted all other options, but I'm getting rather close. Also, Bonkers, not a bad idea at all about the seeds and bringing stuff to doc to look at. I'm new on here but not to the condition, I do have a definite diagnosis of CH, see a HA specialist, and I'm fairly certain if I bring in articles to him he'll at the very least read them; not sure how much he'll condone going this route, though. He said something our last appointment that made me a little skeptical he's as open to busting as others, but I'm sure he'd at least read them over for me and see if there's anything he can do to keep me safe. He frequently jokes how proud he is of himself when he tells me something I don't already know. ;D Same goes with my psychiatrist; though I'm stable now I still see him so I'm certain if it comes to the point where busting is my last option he would take a look as well. In addition, because I have had so little success with... pretty much anything up until this point (and there's been a lot of trial and error), I may ask my doc if he knows any pain management specialists who specifically have experience in neurology... not even necessarily because a doctor like that would be able to do anything super different for me, but just for a fresh set of eyes. While I am in very good hands right now it's just been a lot of suffering, still. So, I think I still have some options left in general but as I said, not a whole lot. Quote Link to comment Share on other sites More sharing options...
alleyoop Posted December 10, 2011 Share Posted December 10, 2011 In addition, because I have had so little success with... pretty much anything up until this point (and there's been a lot of trial and error), I may ask my doc if he knows any pain management specialists who specifically have experience in neurology... not even necessarily because a doctor like that would be able to do anything super different for me, but just for a fresh set of eyes. While I am in very good hands right now it's just been a lot of suffering, still. So, I think I still have some options left in general but as I said, not a whole lot. Advocate, advocate, advocate! Read, read, read, and take your health into your own hands, instead of blindly trusting doctors to solve your CH. I think you will find it the most liberating thing you can do. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted December 10, 2011 Share Posted December 10, 2011 That's a tuff spot you're in at the moment to say the least, Zac, sorry. I do know that when I finally gave the finger to the neuros as far as strictly following their treatment plans was concerned, I started getting much better results. A common story around here. I know that if it was me I'd be saying screw the step by step approach, I'm in high cycle here, this is a critical situation, and I'm going on the D3 right now whether the doc likes it or not. There would be the matter of being careful with the calcium so it doesn't interfere with the verap though. Separating the verapamil and calcium doses by at least 8 hours is discussed in the newly updated D3 info. Of course I take a very aggressive self directed treatment approach, so if it was me I'd probably also still be seriously looking at busting, although the fact that O2 doesn't work for you admittedly makes that a much tougher proposition right now. I don't think Neurontin is a particularly popular choice of drugs among the members here or at CH.com, but I can tell you that at a high dose (2400 mg a day) I had it kick in and cut the number of attacks by half or so right when I was hitting a vicious peak high cycle that was about to spin out of control, which made it well worth it for me during that episode before I started busting. So yep there just might be some hope there. Quote Link to comment Share on other sites More sharing options...
Zac Posted December 10, 2011 Author Share Posted December 10, 2011 Alley, I do read read read! I'm not blindly trusting my doctor to solve my CH, though like I said, I'm in good hands and I respect his opinion immensely. Every time I have an appointment, and frequently in-between, I send him new information I've found on my own. I'm actually going to have genetic testing done with my psychiatrist, too. Apparently he's recently started getting into it. I don't follow it all completely, but basically some people's bodies just process certain medications very differently which can be shown in the testing and, depending on that, can safely be on much higher (or lower) doses of medications than others. He gave me an example and the way he put it was one of his patients had it done and he found that his metabolism just chewed up Lithium and it was wearing off and causing him dips in stability (prescribed for Bipolar in this case), so he was able to fix the dose based on that. I know that's sort of a roundabout explanation and that's the next thing I need to do my own reading on; Pysch just brought it up during my most recent appointment and thought it was something to consider it since there's a chance I could give some of the medications I've already tried another shot if it comes out my body is a bit whacked. Jeebs, like I said, haven't ruled out anything and won't rule out anything... I'll do anything I think will help. It would be hard to separate the calcium and verap by that long right now since I take the verap 4x a day. I don't hear much about Neurontin over on the CHs.com board, either, though I've been through all of the more popular choices with little help. For a little while, the verap helped a lot. I was getting maybe 1-2 headaches a week which for me, is brilliant. It only lasted about 2 months though. This high cycle started while still on that high dose of verap so I don't think it's doing much for me anymore. I actually have very severe insomnia as well and have to take an extremely expensive sleep medication that my insurance just decided to stop paying for briefly, the shitheads. It took me about 3 weeks to sort it out, and for 3 weeks I was catching maybe 2 hours of sleep every 4 days. Lack of sleep is one of my number one triggers for attacks (i.e., lack of sleep the night before almost guarantees a rough day) and I was sleeping so little every day was a rough day and then it turned into a full-fledged high cycle. I was able to beat insurance back into covering it, but even once I got it back and was sleeping okay again the headaches didn't go away. And yes, I went up to 2400mg of Neurontin myself about a week ago but it hasn't helped as of yet... doc said he can go up to 3600 if needed. We'll see. As I said, this is my first DHE infusion so there's always a chance it will help. I just can't help but having very little faith that anything will help right now after really running through the gamut. Trying to keep my chin up, though... Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted December 11, 2011 Share Posted December 11, 2011 Hey Zac, My body also very quickly adjusts to the meds I'm taking, and I'm constantly having to increase the dose. Topiramate, when I was on it, would work for about 2 months, then stop working unless I increased the dose a bit. For a year or so, I was constantly worried about what would happen when I reached the max does of Topiramte. But no more. Not on it now. The same is true for triptans I take for migraines. After a few months, they will stop working and I have to switch to another one for 6 months or so before the first one will start working again. There have also been meds that I would routinely double, and then some, before they would even take effect. And other meds a 1/2 dose is enough. So I found it really interesting what your psych said about different bodies processing meds differently. I'd love to read more on it if you find any information. And yes, I am going to be quite careful when testing the waters with RS and Shrooms. ETA Lack of sleep is also a trigger for me. Although I generally sleep well, I have a rule where I never have 2 late night social events in a row, and never more than 2 in a week. Quote Link to comment Share on other sites More sharing options...
apperception Posted December 11, 2011 Share Posted December 11, 2011 Zac, I don't know how open minded your psychiatrist is, but if it would help, I would be pleased to consult with him or her (or you) as a clusterHead and psychotherapist. Larry www.carrolltoncounseling.com Quote Link to comment Share on other sites More sharing options...
Ricardo Posted December 11, 2011 Share Posted December 11, 2011 Zac, I don't know how open minded your psychiatrist is, but if it would help, I would be pleased to consult with him or her (or you) as a clusterHead and psychotherapist. Larry www.carrolltoncounseling.com That sounds like an opportunity to good to pass up! Thanks for throwing that out there Larry....I bet a person who is in the industry AND actually suffers from our beast could really help to open a doctors eyes up. Thanks from all of us. -Ricardo Quote Link to comment Share on other sites More sharing options...
Zac Posted December 11, 2011 Author Share Posted December 11, 2011 Larry, What a wonderful offer, I really appreciate it. As I said, I'm going into the hospital tomorrow and I'm going to see how that goes; may I get in touch with you when I'm out?? Thank you so much. He's a very nice guy and fairly open-minded and is always willing to talk about this stuff with me; I've spoken with him briefly about busting just to gauge his reaction. He is concerned, as well, but understands the situation I'm in. I would definitely talk to him about it at greater length if I decided for sure I'm going to do it and I'm sure he would speak with you, as I'm sure you could offer some very unique perspectives on the matter. I'm also extremely lucky that my parents are quite open-minded. I have spoken to them a bunch about the possibility of busting, and if I did it, I'm fairly sure my mom would sit with me throughout. I know I shouldn't really trip or anything, and I don't honestly think I'd have much of a problem at all despite my concerns. But if anything did go wrong... no one is better in tune to the signs of me going a bit manic than her. To all else- as soon as I find some more about this genetic testing, I'll post a link in a new thread. I can also easily ask my psychiatrist for some information! Zac Quote Link to comment Share on other sites More sharing options...
apperception Posted December 11, 2011 Share Posted December 11, 2011 Zac, Send me an e-mail at the address on the website and I'll attach some stuff for your doc that may help. LS Quote Link to comment Share on other sites More sharing options...
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