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ClusterBusters

Freud

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Everything posted by Freud

  1. Freud

    Boswellia Serrata

    For now I’m ok on the shots. A buddy is filling his while he gets his 2-3 yr break. It’s only these new crazy ones (they are all crazy but you get it) I use them for. Before this I was able to go a long time without. I’m an idiot though. It just dawned on me I have been detoxing from my bipolar med to bust but I used shots 3 times in the last 2 days. Friggin amature move but in the heat of the moment I wasn’t thinking straight. Shoot I crawled to the draw I keep them in if that’s an indication of my state. Sorry just dawned on me. At any rate. I’d love to find out how to get quality frankincense. Thanks in advance FT!
  2. Freud

    “Cure”

    I have thoroughly enjoyed the convo this started...
  3. Freud

    Day-long low intensity episode

    Thanks CHF you’re a freaking wealth of knowledge. My parents are super supportive in every sense of the word but other than a simple web search one day reading and then explaining the nick name at dinner. They just rely on me to do all the research. Probably bc I have a medical degree... I am so grateful for them but you are a saint! Edit:For the community as well! You are such an asset for those that come here. For some one without CH your dedication is admirable!
  4. Freud

    Day-long low intensity episode

    I like these myself don’t know if they have a medicinal value but for a treat this type is nice. I have never had this one but it’s unsulfered. Amazon link crystallized ginger chews any thoughts?
  5. Freud

    Day-long low intensity episode

    I would insist it, especially since you’ve talked about third line agents. That’s crazy! I would go armed with a copy of the study that proves it works and bring literature that shows it is the number one abortive TX. Some one here can help with links I’m sure. I don’t have or know where to find them. I’ve seen them posted. If I wasn’t immediately post hit I’d search... sorry
  6. Freud

    Day-long low intensity episode

    I delayed for ten months and it was a mistake. I could have stockpiled more injections. I like you thought it was going to be a fight. And I’m sure it would have been the way the first moron neuro ( called himself a headache doc) doc I saw wrote the script. No Diagnostic codes scribbled on a regular script actually wrote for a rebreather mask! When I finally got into my new world class doc I travel 3.5hrs to see he just grabbed an Apria healthcare form and filled it all out, wrote the codes and wala 5 days later it was here. So you may be surprised. See if Apria is in your area and try and get the new pt form to help facilitate it. I know they cover the whole east coast may be west coast too. It’s so worth it. You can get M tanks for home and E tanks for traveling. So far it hasn’t costed me a dime they do same day and next day delivery. I have called for a refil when less than a week has past and expected to hear my insurance rejected it but so far nothing! I do recommend getting the 25lpm regulators I bought mine from https://www.wtfarley.com they sell on amazon as well if you have points to use it’s nice. Just put in the part number on amazon and it will come up.
  7. Freud

    Boswellia Serrata

    I found this site earlier, going through it now https://smarter-reviews.com/lp/sr-boswellia?tr=A3GPo&gclid=Cj0KCQjwkoDmBRCcARIsAG3xzl8RBH7bnjXCjpmi1tODzfqd_zx0qEChp03vQqvWiS_DPi89cX33lr8aAmc1EALw_wcB
  8. Freud

    Boswellia Serrata

    I ran through a whole M tank before I decided to use one of my precious injections I can’t get any more of. I have noticed the bottom 1/4 of these tanks produces less pressure and that I’m not getting a true 25lpm flow out of them when they get this low. But usually I can still bust with them. Keeping the O2 on made it just barely bareable (like I had an option besides the injection lol) so I just kept it on. I also left my phone upstairs and I usually set a timer so I if i fall asleep when the cluster breaks and I’m in that cool down/rebound preventing stage I don’t waste the tank. Mom had been up and I asked her to tell me when 15 min was up but for some reason she felt like since I was up or she was just frazzled from all the pain I was in she didn’t tell me. All in all it was about an hr I was on the O2 before I took the injection. I’m really hoping it doesn’t happen tonight.
  9. Freud

    Boswellia Serrata

    It’s just one of those shot in the dark things my neuro suggested I looked into before my apt this week. Don’t think he knows much about it either. I haven’t looked that hard bc of how shitty this week has been. Just been enjoying my day time as much as I can in between CHs and am now a little fearful of late night d/t the crazy attacks I’ve gotten the past 2 nights. I’m hauling my m tank upstairs and saving my O2 for only at night. It hardly works during the day any way and I now consider my day time attacks a walk in the park compared to these new monsters. I just fear that these new attacks will become my new norm and I’m not sure what I’ll do if that happens. My day time attacks hurt real bad even the worst ones where those around me get nervous or upset by how much pain I’m in don’t compare to the two I got the past two nights. Hopefully they go away. I’m also detoxing from my new med and going to try a 5g mm dose. Last month when I detoxed and was still blocked by my old med I used L. Hoping I can get rid of these nocturnal attacks that have only come back in the last 5 or so weeks.
  10. Freud

    Boswellia Serrata

    Thanks. He mentioned a small study in his email. I guess that’s what he was referring to...
  11. Freud

    Why can't not being in pain be a good thing?

    Did you get a ch?
  12. Freud

    Why can't not being in pain be a good thing?

    I’m chronic too, about to give the D regimen a try. Just need to get a couple of labs. Batch is very confident in his work and rightfully so. Give him a chance to tweak it for you once you get your D lvl, Ca lvl and PTH lvl. He has fine tuned it for countless people. If they come back... there is a chance you get a lose lose and drinking doesn’t trigger bc you’re one of the few people that get an actual remission. You can still be chronic and get no more than 3 consecutive weeks CH free. I felt similarly to you when I got my 2 month break w mm. Before I went on this crazy long half life blocking med unbeknownst to me. The first month I had a lot of days like you’re describing. Although in no way did I want to trigger them. The second month I was all smiles according to my parents. Studying for my boards getting on with my life... then I lost control of them and have to wait another 9 months to detox! Quarterly injections come with big commitments.
  13. Hey Batch,

     

    I’m finally starting the D3 and the regimen but I’ve been told I have to be careful bc I take verapamil 800mg a day divided into 5 doses. So I pretty much take it every 4 hrs when I remember. I recently weaned down bc I thought it wasn’t doing anything and I started to get hit at night so I went back up...  your input is appreciated!

     

    Brian

    1. FunTimes

      FunTimes

      do you take any benadryl along with the other vitamins?  I also added Melatonin at night that helped me with the overnight hits, I started at 5mg and worked my way up to 20. 

    2. Batch

      Batch

      You only need the Benadryl (Diphenhydramine HCL) if you haven't experienced a favorable change in CH patterns by the end of the first week of the accelerated vitamin D3 loading schedule or... if you think you're experiencing an allergic reaction like allergic rhinitis.  Nothing wrong taking melatonin with this regimen.

  14. Freud

    Sumatripton help

    I bought mine on amazon a few months ago for a similar price. I can’t find them there. Some one helped me with the link when I asked for help on the general board. But this place https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540?gclid=Cj0KCQjws5HlBRDIARIsAOomqA0oVN55WssQAcO4tqei2sL2QSAtynIMJH4zhVozk-sjkdQE4qEThOcaAqXOEALw_wcB has one. Make sure you select the 0-25lpm model if you order from them. 25 lpm fills the bag nicely but it fills extra fast if you exhale through the valve if you know what I mean. I have the same mask. I use the mouth piece...
  15. Freud

    Sumatripton help

    I bought my 25lpm regulator on amazon. Some one posted a link for me. It wasn’t too expensive. I use Apria too and have become friends with my delivery guy. He said they had one 25lpm regulator but he was never able to find it at the shop. Otherwise Apria has been great for me. Delivering same day or next if I fall asleep on my last tank or something... they gave me 3 M tanks. How has your experience with them been. What state are you in?
  16. Freud

    Any input

    Hey Voc, you and boat man have similar jobs I think if I recall correctly. At any rate when I started this busting adventure I’m on a little over a year ago I was on a monthly psych med and switched to the quarterly injection. Before I switched and realized it was an atypical blocker I got a 2 month break from my CH. the first month it was real hard not to think they were going to come right back any min. Then the second month I started to smile more and relax. Then they came back and I’ve been stuck with them since. I just accept the fact that this is my life for now until I can detox in 9 more months and have a unblocked bust. Some days are easier than others. But I stay away from the why or why me thoughts and just live in the moment. Boatman and I have had several conversations about it.
  17. Freud

    Any input

    Thanks DD. I have had cervical neck issues for some time as well, but I had a series of 5 burn surgeries on my neck in 2017 and no longer have neck pain or a bulging disc thank god. I have never heard of that Dx. Something I’d look into for sure Voc.
  18. Freud

    Any input

    The night time attacks waking you up from a dead sleep is just a little bonus perk of the condition. It is said that CH originates in the hypothalamus which also controls your sleep wake cycle. It’s probably a coincidence your neck troubles started the same time as their CH. I’ve only been here a short amount of time compared to a lot of active members. But I have noticed people attribute their CH to just about anything if more than one person comisurates. Some say anesthesia from surgery caused it, others say dental work, others say injury. Some say hormone changes. I have given up trying to figure out why. Many people smarter than me have tried to figure the pathophysiogy of CH and barely come up with a working theory let alone a cause. I think it’s best to accept it as part of your life rather than let it consume you when you’re not suffering. My time inbetween CHs these days is too precious for me to dwell on it. Figuring out why does little help to treat. I wouldn’t get a cervical fusion bc I thought it might make my CH better. Chances are it won’t do a thing and cervical fusions you really want to put off until your quality of life is so poor you have to do it. So many people have undergone sinus surgery or dental surgery bc they or a doc thought it could help. I’d say your mm are your best bet.
  19. Freud

    Out lying pain

    There are good docs out there you’ll usually find them at headache centers. Did you check the dr list?
  20. Freud

    Out lying pain

    That ahhh haa moment, when you realize you’re not alone or going crazy!
  21. Hey batch, I meant what I said you do a great service to the community. I have directed many people to D3 and your work. It was just the opening statement that got me. Keep up the good fight. Brian
  22. Batch, I think some times you over sell or misrepresent the D3 results. Sometimes making claims like you did here stating they won’t need the oxygen if they do the regimen. I’ve also heard you tell people well it’s not 100% effective when all tweaks have been tried. You don’t see many people claiming busting/psychedelics are the only or even best way for everyone. It’s my understanding that they are both around 80-90% effective. At any rate, we greatly appreciate your hard work on the subject and all the advice you give. It is truly invaluable but by no means everyone’s cure.
  23. Freud

    any success stories of being CH free for good?

    6 th bust in 2 days? There is your problem. You need to do a threshold dose around 1-1.5g while off all blocking meds. Biggest culprit is sumatriptan and wait 5 days inbetween busts for at least 3 busts. How much mm did you take. What meds are you on?
  24. Freud

    Sumatripton help

    You should insist on it, the script should be for 15-25LPM. My doc had a form from the Oxygen supply co. On the east coast Apria healthcare is very easy to deal with. The drivers all know at least one pt with cluster headaches. Ask for the Msize tanks and 3 tanks has been perfect for me I either call when I start using the third tank and they replace 2. Or I wait until I’m half way through the 3 rd tank and I get next day delivery.
  25. Freud

    Sumatripton help

    There is a daily maximum and monthly maximum. I believe it mainly has to do with the vasoconstriction. Some one here was talking about the studies used to get the drug approved, deaths and heart attacks. Don’t remember the specifics.
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