kymera_gr7 Posted February 16, 2012 Author Share Posted February 16, 2012 Well here's how it went today. I was evaluated, given a lengthy interview as well as taking several surveys, and was spoken to by the neurologist for several minutes then told to leave and not return. Did some searches on Yelp and CitySearch and found that she was given 1 to 1.5 stars at best. I guess I gotta find a new neurologist or just keep on with my own home palliative care. I was given another referral from a friend to a place up in Dallas (I live 3 or so hours away in Austin) that people from out of state come to see. Lets see how THIS goes. On an off note... Today is payday. I'm ordering some RC or going to the head shop for some HBWR seeds. Catch up with you guys later. I got bustin' to do. Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted February 16, 2012 Share Posted February 16, 2012 Make sure the seeds say that they are NOT chemically treated. If they are, taking them could make you sick. Good luck on busting! Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 16, 2012 Author Share Posted February 16, 2012 I just picked up one gram of organically grown, chemical free, and non chemical tested HBWR seeds. I checked up with these folks and I'm awaiting a response to possibly going there to see them. http://www.texasneurology.com/headacheinstitute/ I hope they're better than the lady I saw today... Til then, I think I'll be sticking to busting and monster. Quote Link to comment Share on other sites More sharing options...
Guest Posted February 16, 2012 Share Posted February 16, 2012 http://www.clusterbusters.com/faqlsa.htm Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted February 16, 2012 Share Posted February 16, 2012 MONSTER ROCKS....... Blue can Jeff Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 16, 2012 Author Share Posted February 16, 2012 Yup, I'm prepped and ready to go. Just gotta let the belly empty out a bit then I'll go head and bust. I was big on the Monster Java and the Blue can.... but I LOVE the Rehab Lemonade+Tea Quote Link to comment Share on other sites More sharing options...
alleyoop Posted February 16, 2012 Share Posted February 16, 2012 @Kymera, Please before you dose with HBWR seeds, go to the "Forum Jump" drop-down menu below and read the thread, "LSA - Sees of the Vine". Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 17, 2012 Author Share Posted February 17, 2012 I can't find it nor does it show up on a search? Do you have a link? Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 17, 2012 Author Share Posted February 17, 2012 NM found it! Quote Link to comment Share on other sites More sharing options...
damiano Posted February 17, 2012 Share Posted February 17, 2012 Can I ask you a personal ? - You said that for about the past 3 years you have been episodic and they usually last for about 3 weeks. But you said that this one is going on 5 weeks now. The ? I have for you is how old are you? I am just wondering this because most of us started in our early 20's (some before that age and some later after their 20's) but the norm seems to be around 20 or so when these rear their ugliness. I am only asking you this now to try to help you better so you can be more prepared in the future. Mine started in my early 20's maybe before that but I didnt know what they were and my folks told me it was sinus related due to allergies. I am telling you this because as I have gotten older (40 now) the cycles have become more frequent for me and hit even harder (maybe I am just too damn old for the pain now lol) . I am not trying to scare you - just trying to prepare you for what you might be in store for. Mine used to come every 4 years, then every other year I get one cycle for about 2 months then the following year I get 2 cycles in one year and those are the worse. Again not trying to scare you or anything just trying to make sure you are prepared to fight this damn beast the best you can. Most of us keep a diary - My neuro had me do this from day one - mine goes back a long ways and looking back at it the other day after finding it - I am amazed at all the different dope the doc's had me on lol... It sounds like you have a pretty good guage on when they come and go and for how long already. I suffered for a very long time and recently gave busting a try - going on 3 weeks now pf!!! Good luck ! Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 18, 2012 Author Share Posted February 18, 2012 No, feel free to ask whatever about my past or personal things. I'm pretty open, and if I'm uncomfortable sharing I will politely let you know Plus you're just trying to help me as it is so what do I have to lose by cooperating? LOL Anyway, I'm 23, will be 24 in June and I had my first run-in with the beast mid-way through my 20th year. That sounds pretty intense, but I'm happy your bust wasn't a bust! I have memory issues that seem to have gotten worse as my cycles get worse, so my wifey helps me keep a little headache log on our laptop that describes a wide variety of conditions including weather, temp, conditions, where it happened, what I was doing, all sorts of stuff. Side Note: Successful bust with 4 HBWR seeds the other day, felt great the whole day as if I was full of life again (aside from a few muscle contractions in my belly.) Was fine until this morning when I was hit with an episode this morning that I stopped with a Monster. Planning another dose here after I clean the house and get comfortable. Will keep you guys updated! Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 23, 2012 Author Share Posted February 23, 2012 UPDATE: Successful bust by the second dose of HBWR. I've only been having minor attacks that are manageable. I also got a call from my PCP after she reviewed my CT scans and I apparently have a cyst in or around a sinus cavity that may be contributing to this nasty cycle I've been having. :-? Thoughts or comments? Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted February 24, 2012 Share Posted February 24, 2012 Really glad to hear of the successful bust! (But sorry I don't have anything to offer regarding whether a sinus cavity cyst could contribute to the nastiness of a cycle). :-/ Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 24, 2012 Author Share Posted February 24, 2012 Thank you sir. Will give any info about the cyst after I see the doc again. Quote Link to comment Share on other sites More sharing options...
Purple Posted February 24, 2012 Share Posted February 24, 2012 (But sorry I don't have anything to offer regarding whether a sinus cavity cyst could contribute to the nastiness of a cycle) I don't either but have a feeling it's got nothing to do with CH. Congrats on successful bust [smiley=thumbsup.gif] Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 26, 2012 Author Share Posted February 26, 2012 I may have spoken too early. I had a series of absolutely brutal attacks over the course of yesterday evening til about 3 hours ago. Gah this has been a frustrating cycle. I may skip the HBWR and just go straight to psilocybin. And my damn doctor won't give me oxygen STILL. > Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 26, 2012 Share Posted February 26, 2012 If you have the resources to go straight to psilocybin and are comfortable doing that, then you should at least consider it. Some things to consider: (1) You might of course "just" be having some post-dose hits, which even seems likely given the good results you seem to have had so far from the HBWR. (2) While psilo will work better for some people than LSA, and vice versa, psilo is not overall a more effective agent against CH than LSA. In fact, there are those who have a broad overview who say that LSA is better than psilo. And those same people say that if HBWR is better than RC, it is only by a very very slight margin, if at all. (3) I personally had a devil of a time figuring out what I was doing with HBWR--getting that husk open, finding and picking out those little seeds, etc. -- which is why I (and many others here) recommend RC over HBWR in terms of certainty and predictability of dosage. Is it time for you to look into setting up your own O2 system using welder's oxygen? This doctor thing is upsetting and completely infuriating; maybe it's time to just act on your own? Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted February 26, 2012 Share Posted February 26, 2012 If you have the resources to go straight to psilocybin and are comfortable doing that, then you should at least consider it.  Is it time for you to look into setting up your own O2 system using welder's oxygen? This doctor thing is upsetting and completely infuriating; maybe it's time to just act on your own? Yep those are my thoughts too. Really hoping you'll be able put this beast to bed in his frikkin' grave SOON. Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 26, 2012 Author Share Posted February 26, 2012 I'm very comfortable with psilocybin, I was a bit of a psychonaut in high school Drugs don't scare me. Except PCP and mescaline...lol I'm going to go ahead and rotate a few things around in my treatments (will try psilo and I'm going to attempt to find LSD as well) and see what is best. Thanks for the info CHFather! I guess its a lot like injury pain management. Various opiates/opiods seem to manage different types of pain differently for each individual patient. I guess it's a matter of finding out which works best. As far as welding O2, I asked my sister and her husband (machinists that also weld) about getting a hold of one of their cylinders and they said they'd be willing to help but are concerned about the O2 being denatured in some way or maybe mixed with other gasses. Their professional opinion as metal workers was "get more info, we don't wanna kill our little brother." <3 Love 'em. Anyone know a good company to get welding O2 from that would be safe to use? Quote Link to comment Share on other sites More sharing options...
Whooligun Posted February 26, 2012 Share Posted February 26, 2012 Been reading your posts. We are in the same boat on a lot of things. I'll be trying seeds for the first time this week. I hope you find something that works for you. Stay stubborn, stay strong! Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 26, 2012 Share Posted February 26, 2012 Since this use of welding O2 is kind of "off label," I'm hesitant to push you too hard. I can say that people here have obtained welding O2 from many different companies and used it successfully (or maybe the ones who died from it just stopped posting ;D ;D). It's not unusual for people to get it from Harbor Freight, and there's probably a HF store near you.  If you search for something like [purity of welding oxygen] on google, you'll find 97% of people saying that welding oxygen is as pure as medical oxygen -- quite a few say that it's actually slightly more pure. The O2 itself is definitely not denatured or mixed with other gases; the concerns that are expressed about purity have to do with the tank-filling process, and those are dismissed by most knowledgeable people. (Maybe your sister and brother-in-law might not mind calling one of their suppliers and inquiring about the quality of the O2?) Quote Link to comment Share on other sites More sharing options...
alleyoop Posted February 26, 2012 Share Posted February 26, 2012 (Maybe your sister and brother-in-law might not mind calling one of their suppliers and inquiring about the quality of the O2?) Uh, I don't think that would be such a good idea, as it would be a red flag to the gas dealer. Most will not knowingly sell welding oxygen for medical use. I can say that people here have obtained welding O2 from many different companies and used it successfully (or maybe the ones who died from it just stopped posting). In all my years on these boards, I have never heard of anyone dying from oxygen use - whether medical or welding 02. > About the only problem I have ever heard expressed is getting a dry throat from heavy use, and that is easily fixed by using a humidifier or 'bubbler' that attaches to your medical regulator. That's what I use, and I have been using welder's 02 for 7-8 yrs now with zero problems. Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 26, 2012 Share Posted February 26, 2012 Bob, I'm sorry . . . I was attempting to make a joke about the "dying" part. As my mother always told me, people can't tell when you're kidding on the internet. I will go back and edit that so it doesn't scare anyone away. As for calling a dealer to ask, well of course you wouldn't ask the dealer you were going to buy it from. But if someone else who already has an existing relationship with a dealer asks an innocent question and then gets tanks filled as they have regularly done anyway, I don't imagine the dealer would stop selling to them because they asked the question. Or there are many other possible scenarios -- e.g., they ask one dealer; ky goes to a different one. They already have the tank to give him; he just needs to get it filled. My primary concern was to think of a way that he could be comfortable enough with what he was getting to go ahead and do that. Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 26, 2012 Share Posted February 26, 2012 I will go back and edit that so it doesn't scare anyone away. Hey, the "Modify" button is missing! Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 26, 2012 Author Share Posted February 26, 2012 So I wasn't the only one that noticed it was missing? LOL Looks like you guys have confirmed what I was thinking about welding O2. I'm going to see if the cylinder fits in my car today after I go to the ranch to do a little horseback riding. I guess if it doesn't I could make it ride "duct tape section" on the roof... ;D Quote Link to comment Share on other sites More sharing options...
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