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ClusterBusters

Freud

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  1. Like
    Freud reacted to jon019 in Do you think trigeminal neuralgia is worse the CH?   
    ...nothing to add to that...…………...
  2. Like
    Freud reacted to MoxieGirl in Do you think trigeminal neuralgia is worse the CH?   
    I think they are very close to each other in the level of pain. I've not had Trigeminal Neuralgia, but have spoken to people who have, and what they've gone through to make it stop. If I had to guess, and it might be biassed, I'd say TN maxes at a 9 and CH pings a 10. 
    They are both associated with the trigeminal nerve, just in different places in the face.
    But, pain isn't the element that makes something horrible. At least with CH, they don't often last longer then 3 hours, TN can last for days, and can be triggered by a smile. 
    There is clearly more than one Hell.
    Mox
  3. Like
    Freud reacted to jon019 in New need info   
    OXYGEN....………………………….
  4. Like
    Freud reacted to Padregrande in Status of clinical trials slated forVeterans Affairs Hospital in West Haven, Connecticut   
    Mr Freud, Brian? A half of a year later, and I am just about to harvest. Can you offer any advice, or directions, on dosing? When I was a pup I did these for fun, although I didn't grow them, now, I just want to do enough to beat the cluster.
  5. Like
    Freud got a reaction from jon019 in How powerful is the mind??   
    If there is anything I have learned about CH and people in remission and changing CH is that coincidences are common. Wether it’s a wackey “cure” someone thinks they found only to have their CH return the next year and the same thing not work at all. CH is always changing. It’s a crazy coincidence that he got one the same day. It’s stastically crazy that your wife got them and you knew some one that has them. There are only about 400k people in the US with them. I have a friend that went the welding O2 route and it just so happened the guy that owned the place has a son with CH so he could talk freely about what he was going to use it for. I mean what are the chances. I’ve won the lottery on a lot of medical problems and I thought my chances of winning the lotto are better than getting Chronic CH but here we are....  sorry your wife is suffering. Have you clicked on the blue button on the top of the page to see what this site is all about?  There are other good options to get rid of the beast or prevent it in the future if you know when your cycle starts. 
  6. Like
    Freud got a reaction from jon019 in How powerful is the mind??   
    If there is anything I have learned about CH and people in remission and changing CH is that coincidences are common. Wether it’s a wackey “cure” someone thinks they found only to have their CH return the next year and the same thing not work at all. CH is always changing. It’s a crazy coincidence that he got one the same day. It’s stastically crazy that your wife got them and you knew some one that has them. There are only about 400k people in the US with them. I have a friend that went the welding O2 route and it just so happened the guy that owned the place has a son with CH so he could talk freely about what he was going to use it for. I mean what are the chances. I’ve won the lottery on a lot of medical problems and I thought my chances of winning the lotto are better than getting Chronic CH but here we are....  sorry your wife is suffering. Have you clicked on the blue button on the top of the page to see what this site is all about?  There are other good options to get rid of the beast or prevent it in the future if you know when your cycle starts. 
  7. Like
    Freud reacted to greg in oxygen   
    yes, they said that if they get letter from doctor stating I've had more than 5
    ch headaches in a month and ones that range up to 180 minutes, they will cover oxygen.
    I know, thought i had it wrapped. We also talked with Apria customer service who said
    they would update my previous account and add that Medicare would pay, then [you'll love this]
    said I need to call the local distributor. I said can't you call them and tell them to ok the request.
    they said no I had to do that myself, which will try tomorrow but know will net out the same!
    best,
    g
     
  8. Like
    Freud got a reaction from CHfather in Any ideas besides Rizatriptan, Sumatriptan or Verapamil?   
    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. Thanks
    Freud got a reaction from Into Light in info sheet, general and IMPORTANT Oxygen info   
    Yes that is the type you need it can be switched
  10. Thanks
    Freud got a reaction from Pcaola in 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. 
  11. Like
    Freud got a reaction from CHfather in Any ideas besides Rizatriptan, Sumatriptan or Verapamil?   
    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
  12. Thanks
    Freud got a reaction from Pcaola in 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. 
  13. Like
    Freud got a reaction from Dana129 in 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. 
  14. Like
    Freud reacted to BostonHeadacheDoc in New here but not new to the evil!   
    Hi bobcat, 
    Well that sounds rotten. Certainly not CH as the headache is all day, also CH is strictly one sided- sounds like yours is not? Not CH in which case verapamil is not going to help at all at all. Indomethacin is non specific, certainly a good anti-inflammatory, beware known to be very irritating to the stomach. Best avoid using the term cluster-migraine as it causes mass confusion and it is mostly used by folks who know not what the attacks are. 
    Your story at the gym (at least you were lifting a dumbbell) and sudden headache- that is often one of 2 things, a thunderclap headache- which can be a syndrome known as reversible cerebral vasoconstriction syndrome (RCVS) but that only lasts- days to weeks; or could have torn a muscle, ligament or other neck hardware resulting in a cervicogenic headache (caused by neck problem). I totally understand why they thought of low pressure headache- can present with quick onset headache focused at the back of the head (can be thunderclap). Low pressure/low CSF volume headache is generally positional - you get much better quickly lying down, with head down, only for the pain to come back quickly when upright.
    Out of control high blood pressure can also present like this- as you have high blood pressure you had better be measuring your blood pressure at home (with a home BP kit) to make sure it is not very high). Botox is not going to help you.
    I was recruited to the Graham Headache Clinic at Brigham and Women's Faulkner Hospital April 15th. Fell free to PM me if you have any Qs or bmcg@bu.edu 
  15. Like
    Freud got a reaction from Mizagorn in 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. 
  16. Like
    Freud got a reaction from Mizagorn in Tubing and syringe sizes   
    Just checked amazon and the 540 regulator doesn’t come up. Sorry
  17. Like
    Freud reacted to Rod H in “Cure”   
    I'm a butcher but I'm not a militant. Militants imply their belief is the only truth. I believe everyone should walk their own path. Peace...and I truly am a butcher.
     
  18. Like
    Freud reacted to CHfather in Make this site as accessible as possible. :)   
    Denny,
    You, spiny,  THMH, and Jeebs could never lift another finger here and your contributions would still be immeasurable.  I know that's not the subject here,. I just wanted to say it.
  19. Like
    Freud reacted to Dallas Denny in Make this site as accessible as possible. :)   
    G'evenin ya'll!
    Many good points here!
    As Chf stated, much has changed in the years since we both became involved with clusterbusters.......all of the information in the busting files is based on the anecdotal evidence and surveys from the first few years.....and we've now added another 10 years of folks experience and anecdotal evidence with no new surveys or significant rewrites to the original information.
    I've spent many, many hours cleaning up the corruption caused to the numbered buster files by the migration from the original yabb powdered board....however, it's not possible to pin them in numerical order so I've pinned just the "Clusterbusters Files Content" page with current links to the numbered files.
    I'm also going to meet with Bob W at the conference to discuss updates and changes to the board along with staffing..... I ain't no sprang chicken, Spiny is recovering from surgery,  we've completely lost bejeebers,  Jeff (That hurts my head) isn't here as much as in years past, and everytime I talk to Bob W he's headed to another conference or presentation on our behalf so we are rarely graced with his presence.
     At any rate, please continue with suggestions in this thread and I'll use it for notes when Bob and I meet up.
    DD
  20. Like
    Freud got a reaction from CHfather in 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...
  21. Thanks
    Freud reacted to CHfather in Describing CH to non-believers   
    FWIW, that recent big study of people with CH (more than 2500 respondents) asked people to rate the pain of conditions they had experienced. I can only paste in the data here. Column 1 is the "minimum" rating on a 1-10 scale (not sure what that really means here), 2 is the maximum, 3 is the average.  I think one reason I can relate a little to the CH experience is that I had pancreatitis (second-highest average rating after CH; ahead of childbirth) of unknown origin for several years (one long bout and then frequent shorter ones).  It was agonizing, and no doctor could figure out what was causing it or what to do about it.  Finally I correctly self-diagnosed the cause: MSG!  So, some similarities as I say to the CH experience, but still nothing like the pain level.  (This self-diagnosis (which was accurate) is one reason why I'm adamant about asking people whether MSG might be some kind of trigger for their CH attacks, and why I compiled the "triggers" doc in the CB Files.)
    Cluster Headache attacks

    0.00

    10.00

    9.58

    Child birth

    0.00

    10.00

    7.21

    Migraine

    0.00

    10.00

    5.61

    Shingles

    0.00

    9.40

    4.59

    Broken Bones

    0.00

    10.00

    5.23

    Heart Attack

    0.90

    10.00

    5.07

    Herniated Disk (i.e. slipped disk)

    0.00

    10.00

    6.16

    Arthritis

    0.00

    10.00

    4.04

    Sciatica

    0.00

    10.00

    5.10

    Kidney Stones

    0.00

    10.00

    6.87

    Gall Stones

    0.00

    10.00

    6.30

    Pancreatitis

    4.00

    10.00

    7.45

    Fibromyalgia

    0.00

    10.00

    5.64

    Spinal Tap

    0.00

    10.00

    4.61

    Gunshot wound

    1.00

    9.00

    5.89

    Stab wound

    0.00

    9.00

    4.59

    Biopsy (Kidney, Spleen, Liver, Bone Marrow or other major organ)

    0.10

    10.00

    4.67

     
  22. Sad
    Freud got a reaction from Into Light in 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. 
  23. Like
    Freud reacted to MoxieGirl in Describing CH to non-believers   
    J,
    Thanks for the real world descriptions of this pesky little thing called pain. 
    There is an element about clusters that I find makes them unique, and separates them from ALL other forms of pain. 
    Be it broken bone, nerve pain, kidney stone, whatever... all these pains come from outside the brain and travel to it. Even headaches and migraines are on the surface of the head sending the pain inwards. 
    But when I experience a cluster, it feels like it is being generated at the very source, in the brain, in the pain centre. 
    Now, obviously I haven't experienced every pain in the world, and this is (again) my perception of the pain. 
    But it is what I think makes Clusters uniquely extreme.
    Mox
  24. Thanks
    Freud reacted to ThatHurtsMyHead in Describing CH to non-believers   
    Maybe a bit of comparison on my Kipp Scale, for those that have a different interpretation:  
    I've broken my wrist before.  It was 10 at night and I didn't feel like going to the emergency room.  I decided to go to bed and go in the morning.  I went right to sleep like a baby 15 minutes after breaking it.  Slept fine got up.  Put my wrist in a tshirt sling and went to the emergency room.  My kipp level was maybe 3 out of 10.
    I've de-gloved 2 fingers on my right hand in a sailing accident.  The index and middle finger had the meat pulled right off the bone.  My middle finger bone was sticking out like a skeleton you see at Halloween.  Of course both fingernails were peeled off as well.  We were docking a large boat and my fingers got caught in a cleat.  I yelled up to the guy on the bow not to dilly dally, that he had to take me to the emergency room as soon as the boat was tied up.  I grabbed a hand towel from the galley and ran back on deck spewing blood everywhere.  I finished securing the stern and port of the boat before showing my friend what happened.  He drove me to the emergency room where they reassembled my fingers.   Oh and without any anesthetic.  I'm immune to the anesthetic they use for nerve blocks.  My peak pain through the entire event was maybe a 4.  My pain tolerance is VERY high due to my years with CH I can only assume.
    I've had 3 kidney stones.  Passed one of them.  Kipp 5 to 6.  Other two had surgery to remove and were maybe Kipp 3 tops. 
    To say my pain levels with a CH K10 are worse than an amputation without anesthetic is a no brainer.  My K10's are much worse.  Everyone is different, but pain is pain.  Support for our CH family here is what's its all about. 
    J
     
  25. Confused
    Freud reacted to Siegfried in Describing CH to non-believers   
    I tend to agree with Johncluster here. 
    But anyway, my take on this is that it's normal that someone who don't have CH do not understand what it is and how painful it can be. I am also not expecting that from them as they don't have the condition. There are also many clusterheads saying: "Oh migraine is nothing, or CH is migraine x 1000" or similar nonsense, while most of these people even never got migraine so how do they know the difference so well ? In my experience I prefer the severe pain of a 1 hour CH attack EVERY TIME above the miserably sick and almost near-death feeling of the most serious migraine attacks I experienced that last 72 hours.  
    I am quite open to talk about the condition I have and that is also how I explain it: "I have CH. It's a rare neurological condition existing of relatively short headaches that can be very painful. Pain is mainly in the eye and it goes away while breathing oxygen. but I have to deal with this nearly every day".  That's it, nothing more or less. What I then see is that most of these people are looking it up on Internet for themselves to get some more information or stumble on a video that shows what such an attack really is. Of course if you try to convince them at all cost how painful CH is and comparing it to the most grueling tortures, they will look at you like you are an idiot.
    Best Regards !
    siegfried
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