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ClusterBusters

Freud

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Everything posted by Freud

  1. Freud

    oxygen

    I live in NJ and use Apria, that is definitely not their normal practice. My Dr filled out a form faxed it in and wala I got O2 no problem. The delivery guys are great. I have many tanks besides the 3 M tanks they know I have. I recommend calling Apria and get some one on the line from CS and just keep escalating up the food chain to some one that can help. Apria has been great for me.
  2. Freud

    Shadows back from pizza

    You doing the Keto diet?
  3. Freud

    Australians beware

    So I just watched most of this video and I’m about to finish it. I know there are several people from Australia that I’ve seen here. I don’t know what my local laws are in mm but this guy almost got 25 yrs for possession. It’s sad that it’s our medicine and some of us require higher doses thus higher amount of stockpiled mm if you have to dose weekly like some of us. Hopefully CA, AZ, and Vermont pave the way for legalization in 2020. Click here to watch the YouTube video
  4. Sorry BOF didn’t see your post here on the second page. Lol
  5. Yes that is the type you need it can be switched
  6. Freud

    How Similar/Different are our CHs

    I’m the same way with the O2. If my CH starts at full blown like some one turned it on with a switch then the O2 usually doesn’t work. Most of my nocturnal attacks start an hour or so after I’m asleep. They typically have a ramp up but some are faster to ramp up than others. Hence I moved an M tank upstairs right next to my bed and got a second regulator so I cut down the time to get dressed and run down to the O2 now I just sit on the edge of my bed and put the mask on. This has been a great help. As for sleeping position, I have a fellow cluster head friend I met through here who would sleep in a chair because some one told him it would help. He believed it did so he would sleep in the chair. Until I started to tell him I thought it was BS. He did a little experiment and concluded it was just the luck of the draw how many times he got hit at night. Some people swear it makes a difference. I happen to love sleep and my bed and refuse to give it up. I suffer from insomnia but lately I’ve been getting so many hits at night I’m so sleep deprived insomnia isn’t a factor, it’s the CH devil that robs me of my sleep. I dont find hot or cold compresses helpful. As well as hot or cold liquids. One of the regulars here used to drink cold liquid through a straw and direct it to the roof of his mouth to create brain freeze and he thought it helped. As far as cluster heads go we all have a few things in common but we all respond to treatments differently but you will find some people that share some of your same symptoms or aborts. Another important thing I have learned from others sharing their experiences here is that clusters change. What once worked can all of a sudden stop working, which is a scary proposition for those of us that have found relief either from pharma or alternative treatments like busting. I started a thread a couple of weeks ago which was basically to lighten up the mood here and shed some light on some of the more obscure things people have claimed cured them. I simply searched the site for “cure” and posted a link to the search results. The word cure is a bit taboo here as there is no cure for CH as of yet. So far in my opinion the only things that show great promise is Batch’s Vitamin D protocol and busting. They help a lot of people but by no means are a cure. Here is a link to the “cure” thread. As one member suggested to me it’s probably worth starting with the older posts and ending with the most recent. There are a few by Potter that are down right hysterical. Brian
  7. Freud

    Describing CH to non-believers

    Your best bet is to call the Jefferson headache center in Philly. I travel up to CT to see my doc. I pay out of pocket bc I don’t have out of network benifits any more. I am going to call Jeff tomorrow and see if they take my insurance. If so I will make an appointment with ***Dr Young. Another CH friend of mine recommends him. He is the director of the program, up to date on everything, a big CH advocate, a supporter of clusterbusters and busting. So you can and should speak freely about it. Going to a headache center makes all the difference. I wasted 6 months with my local headache specialist. At Jefferson if you call and say you have cluster headaches and need to get in. I hear they find a way. That’s the same way my headache center is. They may not do it for new patients but certinately for known Pts. As for the drug testing it’s really nothing to worry about. Psychedelics are metabolized and excreted very fast. For example, psilocybin and Psilocin the two active alkaloids in mm they would test for, clear your systems in less than 30hrs and 5 hrs respectively. So unless you dosed, went to work the next day and had an incident warranting a drug test you will be fine. Even then it is a special order assay and is rarely done. If I was you I’d dose when you had at least the next day off if not two. I am a PA and when I go back to work (when I get my CH under control) I’m not sure what I’m going to say when docs or people ask me how I treat them. I may just say alternative medicine or I may just tell the truth. I know of two people on here that work for the GOV or department of corrections, people with friends that are police, judges. All their bosses they have told have been supportive and encouraged them to try what ever they had to. One of the CHers did experimental brain surgery before trying mm because he was so anti drugs and didn’t understand psychedelics. I wouldn’t tell an employer I used LSD but I’d be more inclined to talk about the mm if I was pressed about what kind of alternative medicine I used. You have to judge your bosses. Have they ever witnessed an attack. Do they know how much you suffer? When I told my parents I remembered seeing a 60 minutes piece on CH and MM some where around 2010-2015 despite being anti hallucinogens from all the misinformation out there, they said do it. What ever it takes, but they see me every day in agony. The CHers I mentioned that had the support of their bosses and friends had all witnessed bad attacks. I’m mid hit and having trouble focusing so I’ll cut it there. Food for thought... brian ***i have to verify that this is the correct dr my friend recommended. I’ll post what he tells me ASAP. I thought he said young was the director but he’s not. I think I mixed up his old doc there with the new doc he’s going to see in the future.
  8. Are you chronic or episodic? Are you taking sumatriptan pills or injection that stopped working. In general the pills are worthless and the injections or nasal spray are the best routes of administration. What dose of verapamil are you on. Quite often it requires doses in the 800-1000mg/day. You need to be followed by a cardiologist and see them after each dose increase to check your EKG and blood pressure. As for the oxygen we have found that the standard 15LPM is not enough for a lot of CH patients. A lot of us buy our own regulators that go up to at least 25LPM. I wouldn’t count the oxygen out until you read up on it here. Sometimes technique makes all the difference. Some people hyperventilate and have better success. I myself found much more relief with the 25LPM flows. If you need links to some affordable well made regulators let me know. And finally we get to alternative treatments which is what this site is all about. Click on the new users blue button at the top of the page. It will lead you to links about busting. Once you’ve read that stuff make a post in the theories and implementation section with any questions you may have. The alternative treatments are a very safe and effective way to abort a cycle or even prevent one. Brian
  9. Freud

    Describing CH to non-believers

    Thanks for sharing Paul, when I watched my first couple of people getting an attack I said to my mother (I currently live with my parents) is that what I look like? I don’t look that bad. And much to my surprise she said it’s just as bad in a different kind of horrific way. She in particular worries about the pain I have to endure. It doesn’t matter how much I tell her I will never be suicidal she just worries about it. I see a psychologist on a regular basis, once a month to every week depending on how I’m feeling. Honestly since I’ve been dosing with mm (magic mushrooms) for over a year now I will only get a hint of depression here and there. I also think it helps with the hopeless feelings as I rarely get those thoughts either. Despite knowing my options for treatment are very limited. As for the emotional part I hadn’t been able to cry for over a year until a couple of weeks ago (I’m 18months since my first CH and I’m chronic). Then my mother told me about how her dentist asked how I was and she told him I was battling CCH he winced and said “he’s been through so much, I’m so sorry...” and I immediately started balling. Since then I’ve been fairly emotional at times and I try not to break down in front of my parents too much. When I look back at how much pain I’ve endured since I was 14 (I’m 40 now) it seems Unhuman. From serious third and second degree burns, bulging cervical discs, burn scars crushing my spine, the list goes on all in all 25 plus surgeries since 14y/o. But all that pain has prepared me to deal with the CCH (the worst pain of them all). Take a look at my post history to see more, I’ve rambled enough. Plus I have mad a few threads about mm cultivation with links. There are several ways to cultivate. Another option that may be better for you since your cycle has already started is to try LSA contains seeds. Click on the new members button at the top of the page there is a link to more info.
  10. Freud

    Describing CH to non-believers

    @Pcaola besides being a place to learn and share about busting, this is a place to come when you feel low or desperate. This site has given me inspiration. Just knowing others have made it through decades of CH and how much psychedelics can help. Plus I have found in life there is always some one that has it worse than me and I have learned so much from them. Don’t ever apologize for venting/ sharing your story here. We have almost all been there.
  11. Freud

    Australians beware

    The moral of the story is never leave your house with more than 20g to be in the safe side including the bag... in NJ it’s up to 5years jail. Freaking crazy.
  12. Freud

    Just diagnosed with clusters

    This one is for the smaller E tanks, I suggest asking for a few of these so you can travel with them. I keep one or two in the car E tank 25 LPM regulator the large M tanks is what I use at home this is the regulator for the M tanks https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 when buying them make sure you pick the 1-25LPM regulator. This company may be more expensive than some you can find on amazon. But I have found the cheaper ones made in China say “brass where critical” and the Farley regs are made with all brass.
  13. Freud

    Just diagnosed with clusters

    Hi Mrskgood, welcome, sorry you have to be here but this is probably the best CH resource out there. As CHF states the blue button is a great place to start. Many of us “bust” but not all of us for different reasons. You can find info on non busting remedies like Batch’s vitamin D protocol and the gamma core device. It sounds like your doc has you started on the most appropriate first line treatments. Your verapamil may need to be turreted up to a high dose as high as 1000mg for some of us. You need serial ekg’s and is best to be followed by a cardiologist while titrating. Your dose can be increased every 10 days or so. Oxygen will be your best friend and most of us require flows at 25LPM (requiring you to buy your own regulator online I buy from wtfarley I can help you narrow down which one if we know what size tanks you have). The other thing some of us use is imitrex injections. Pills are usually useless for CH but they should be used sparingly for higher KIP level CHs. Search for KIP pain scale which was created for CHs. You can get rebound headaches from overuse. It is also accepted here that too much imitrex increases frequency and level of pain. Edit: if you are getting sumatriptan injections I suggest asking for zembrace. It’s sumatriptan but it’s only 3 mg per injection so you could use 4 a day if you get a particularly bad day. Most insurance companies will only pay for 4 boxes (16 injections) a month.
  14. Freud

    Describing CH to non-believers

    Sounds good FT, I’ve had a lot of prep to deal with this CCH. 25-30 surgeries since 14 (I’m 40now). It has truly made me the man I am. And a great physician assistant. I could do without the adult onset Bipolar and the ptsd that came from the few years I was manic and in denial making horrible decisions as well as the CCH the last 18 months. But I’m glad I got it and not my sister or parents. They for sure couldn’t handle it. You are an inspiration to me, I’m still hopeful I’ll get it under control with psychedelics in 8 months when I’m finally detoxed but if I can’t were in this together either way! For 15 years I did pediatric and adult heart surgery, I thought I’d finish my career doing that, it defined me to the core but now I’d be more than happy doing a mindles speciality like dermatology. Great pay no call no more 60-80hr weeks sleeping in the hospital killing my neck and back doing 8-15hr surgeries. I’m ready for what they call a OMGWTFBBQ job. Copy that into google. Lol. Looking forward to it FT. The market I was talking about is the reading terminal market...
  15. Freud

    Describing CH to non-believers

    So I’ve broken both heads off of my radius and ulna, had an s fracture with displacement very close to a compound fracture. I drive home from the skate park woke up my parents and said “I think it’s broken.” My father was like “are you an idiot, it’s broken”. In my late 20s I broke a bone in my wrist and dislocated my elbow (that hurt, especially when I put it back in place but still not as bad as a kip 2-3). The only pain that I have experienced that registered any where close to a kip 7-10 was when I was burned (22% face, neck, chest, and shoulders). I spent 2-3months in the Burn ICU where daily they take your bandages off in a special room and peal/pick at the dead tissue until they get to the healthy stuff. They load you up with IV morphine and valume, which does nothing as soon as they start to take off the bandages. You hear people screaming bloody murder all morning long as each pt in the unit gets their turn. I would pray for god to take me in my sleep. Never happened... The funny thing is my CHs are more painful and I have never prayed/wished to die like that. I’ve thought if my POS shit car falls apart while I’m doing 90to get home to my oxygen if I don’t have a tank with me it would be a blessing. But that’s as close as I’ve gotten in my negative thoughts. I’ve told that to my psych and he says that’s perfectly normal. I’ve also had a thoracotomy (incision between the ribs for lung surgery) which is supposed to be the most painful incision in surgery and although it hurt real bad it’s nothing compared to CH. All in all I’ve had a lot of “painful shit” and nothing compares to a kip7-10. We truly won the lottery with this crap.
  16. Freud

    “Cure”

    It’s real interesting what comes up if you search “cure” Click here 26 pages! I only got through the first few but it’s real interesting.
  17. Freud

    Make this site as accessible as possible. :)

    Thanks for raising the subject!
  18. Freud

    Make this site as accessible as possible. :)

    Thanks again as always CHF. I wish it would come up in a search for just cluster headaches. If you don’t know about “busting” and alternative options and specifically search for mushrooms and CH it can be hard to find. That’s what I meant...
  19. Freud

    Tubing and syringe sizes

    Just checked amazon and the 540 regulator doesn’t come up. Sorry
  20. Freud

    Tubing and syringe sizes

    Sorry I didn’t see this thread it may be a little late but amazon has returns if you like this option better. I have recently bought two regulators from this CO WTFarley one 540 25lpm and a regulator for Etanks that goes to 25LPM. The first I bought direct. The second one I searched the product code in prime and it came up. Price was a dollar different but I had amazon points to use so all I payed for was shipping. I went with this company bc if the quality of their products. I could have bought a 25$ Etank regulator but even the product description sounded cheaply made. I haven’t included the amazon links but I think you got that covered it’s late and I’m mid hit. A lot of my posts are mid hit and I try to chime in here when I’m down for the count so to speak. Given that 9-18hr of my day are during a hit. The rest of the time I try to sleep and do something that make me feel good or study. Hope this helps. Brian if you can’t find them using product codes from the Farley site on amazon let me know. I didn’t search the 540 reg there but I’m assuming it’s available. The E tank one was.
  21. Freud

    Make this site as accessible as possible. :)

    I agree with the original poster to some degree about using the general board and the unspoken rule of not talking about busting, mm or any of the other methods there. After all the site is called clusterbusters. I have made numerous posts with lengthy explanations on how tos with out getting into details and I still spoon feed those that come and refuse to use the search feature when I tell them exactly what to search for. To do as the original poster suggests in every post is a little much. The regulars do a lot of hand holding and repetitive posts for newcomers. It takes a lot of time as is for some of us so a little direction and encouragement on what to search for and to make a new post in the appropriate section with questions seems more than reasonable. I think a lot of people that find this site come from seeing bobs videos on YouTube. That’s how I found it. I have yet to see clusterbusters come up in a web search for CH on any search I’ve done.
  22. Freud

    Describing CH to non-believers

    I’m with you on that one, broken bones don’t even compare. This ch shit is downright wicked.
  23. Freud

    Describing CH to non-believers

    You couldn’t be further from the truth. I’ve suffered many medical problems. From having 22% of my body badly burned spending 6 months in the hospital having your skin and flesh peeled off every day down to bloody healthy tissue ( and I begged god to take me in my sleep every night) to having my hand and arm mauled by a dog and getting infected requiring multiple surgeries. All in all I’ve had over 25 surgeries from the age of 14-40 and the last 2 years with chronic CH doesn’t even compare. I’d rather have my skin and flesh picked off for hours a day then suffer with the 4-8 attacks I’m currently getting. But I agree with others here no one can compare their pain to yours and visa versa. It is well established that CH is the worst pain in medicine. May be you’re lucky and the CH you may or may not have ( its unclear to me from the sum total of your two user names and comments that you have the same thing as many of us). But I don’t judge, you shouldn’t either.
  24. Freud

    Dr. Todd Rozen

    It is GHB aka the date rape drug... my dr mentioned it as an option at my apt yesterday. Not really an option for me.
  25. Freud

    Infusion Treatment Question

    I’m guessing they are DHE infusions. I have no experience with them. Perhaps some one can chime in.
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