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Posts posted by Freud

  1. Hi all, as you know I’ve had no luck finding a doc in FL to continue the ketamine I was in as an abortive before I moved here.  A kind family member has offered to pay for me to try infusions, as it is all the rage here and the centers are everywhere. Yesterday was my first infusion.  I was exhausted going into the infusion and fell asleep just as it started. They started me on “high dose protocol” 2mg/kg (limit is 4.5mg/kg). Fir my skinny ass that was 200mg over 45 min. 2x they gave me 10mg IV push bc she said I shouldn’t have been talking. Lol. This sent me into K hole land.  Quite the experience (feels like you’re kind of outer body and part of the essence of existence if that makes any sense). I started to become more aware of the experience in the last 15 min as I got slammed w what would have been a kipp 10 and I had to pee like a race horse from the half a liter of fluid given w the infusion.  I said to my mother who was sitting next to me “I think I’m getting whacked.  The CRNA came in turned the lights on looked at me and said “wow you can really see it in your face, you look twisted, your eye is drooping and shut and it looks real painful!!!”  She had a lidocaine soaked q tip for an SPG block ready and I put it all the way back to my SPG (I’ve had many and it’s not for the faint at heart to get it all the way back there). It didn’t abort the attack but I was still fairly effected by the infusion that just finished and I asked them to disconnect me so I could run to the bathroom.  We left shortly after that, I was still getting hit but the pain was filled by the ketamine still in me.  I’m guessing it was REM sleep that triggered the hit.  Last night I got hit 2x after the infusion then my normal 5 hits every time I hit REM sleep.  I’m going to try weekly infusions and see I if I get results.  When I started at home Ketamine a year ago I was on a little over a gram a day.  Now that was intra nasal and oral.  Bioavailability is less than IV but the total amount of ketamine per day for days on end suppressed my CH to less hits per day, aborted the attacks, and my hits were now 45minish if I did nothing instead of my normal 3 hr hits.  Since backing down to 600mg oral only a day my hits got bad again.  Now without the at home K fir about a week now my hits are back to pre ketamine status...   

    will keep y’all updated.  Next infusion they will do 3mg/kg.  She also added lidocaine and Mg to the infusion to see if it would help w the attacks.  

    • Like 4
  2. I feel your pain @Dallas Dennyand @CHfather  I too have a bulging C5&6 as a result from my scar contracture and looking down through surgical loops 10+ hrs a day for years.  I took a break from practice bc I couldn’t take the pain. I was referred to a really good spinal surgeon and he said it’s bad for my age but if I started w surgery now I’d regret it bc they need to be revised.  So the later you start the better off you are.  I finally got my burn scars revised and the bulging improved (I did do PT to no help). Sadly in between my 4 and 5 surgeries I got CCH.  The neck pain improved.  But now my scars need to be released again and I started getting  neck and shoulder pain, numbness in fingers, dropping things...  I asked for trigger point injections and it was the best decision I ever made!!!  They do my neck and upper thoracic muscles that need it.  First round helped some, but the next month I did it again and wala my pain and everything got markedly better!!!  Now it’s my go to when it flares up. No more epidurals for me.  I highly recommend trying it.  They use a numbing agent of their choice and kenalog (steroid).  I try and stay from the roids after @FunTimesand @Pebblesthecorgihad their hips done. I really avoid it.  But for me the resolution of symptoms w 2 months of injections is worth it for me. 

    I hope the pain is getting even better. Hopefully my experience helps you...


    Thinking of you buddy!!!

    • Like 4
  3. On 11/15/2021 at 10:21 AM, Pebblesthecorgi said:

    Generally speaking moving forward with surgery is a balance between how the condition is affecting your quality of life and the potential for long term harm if intervention is delayed.  Many times radiographic appearance and symptoms do not correlate.  Imaging is a guide to intervention but not necessarily a mandate for surgery.


    If you can manage the pain, have effective relief from things like physical therapy, medication and range of motion its better to avoid surgery.  If on the other hand you are just "grinning and bearing it" then having surgery is your best option.  You can always do surgery but you can never take it back.  No procedure is without complications which is why it should be the last thoughtful option.. 

    best informed consent I have ever heard!

    • Like 3
  4. 2.5hr car ride later saw a worthless NP and again they don’t use ketamine and wanted to push Emgality and get this “physical therapy “!!!!  Mom threw a fit and they at least refunded us the money for the appointment.  The Pratice manager wanted to refer us to a friend that has ketamine clinics but I’m staying away from any crooks these people know. 

    • Sad 1
  5. Update


    i have another Neuro apt tomorrow and they said they use ketamine when indicated.  I made them ask they swore they did.  It’s down in miami again so another long car ride.  

    I spent the day calling every pain doc in an hour radius and some further.  The one I found that called me back and said they would help me.  Shocked me when I told them I was self pay and they told me they don’t do self pay only insurance!!!  Never heard of such a thing.  I begged them to ask the doc to extend me a professional courtesy and that I was desperate to find some one to help me.  They said he would see me.  That appointment is dec 1.  


  6. Most of us use M tanks. Huge cylinders.  Get friendly w your delivery person. It goes a long way.  I have always used Apria, tipped them randomly when I can and asked for their Cell #s.  I txt them when I am running low and always get 3-5M tanks per refil.  They have seen me get an attack and have had other CH patients. They knew about busting and have all become friends.  I’m terrified since I moved and haven’t called them yet in my new location.  Will call Monday as I’m out of ketamine and nursing my tanks.  Ran through half a tank last night. I usually go through 1/2-1 big M tank a day.  If I use E tanks one tank is good for 1-2 CH.  at 25LPM.  The mask and high flow will do wonders for stopping an attack...

    • Like 3
    • Thanks 1
  7. Update


    bad news. Saw new Neuro today and he doesn’t use ketamine like his office staff said he did.  I’m up the creek w no paddles.  Getting my self used to not having any aborting options other than the 4 M tanks I’ve been saving for the days you just want to die so hopefully I don’t enter that head space.  

    instead the new Neuro wanted me to try Emgality. This was after me telling him I’ve had CCH since 2017 w only one month break in the first year from mm but couldn’t repeat results.  He then says @are you sure you have CCH you get 6-10+ attacks a day?  “.  I almost lost it.  This was after listing all the failed treatments I’ve tried and the ones I won’t try.  

    He gave me a garbage bag full of Emgality  (small bin) full of migraine starter boxes. So that’s 2 120mg auto injectors  that I have to play w one to only get half a dose out of and into me each month.  I have not heard anything good about success in CCH Pts.  They abandoned the CCH arm of the study for Christ sakes.  He didn’t want to hear it. Says so I guess I’ll see you in 3 months?  And he took an empty troche packet w my script.  To talk w his partner about but wasn’t hopeful. 

    the hunt fir non psychiatric at home use Ketamine continues.  Purdue Pharma Feck U.  Screwed up all of pain management.  Freaking infusion only clinics are everywhere. I’d try it if I could afford it....  


    got my oh shit helmet on!

    • Sad 3
  8. I will hire an attorney if I get rejected but as you said it’s not enough to live just at or above the poverty line.  I have no doctors now, aside from the ketamine and psych meds I have no major issues other than a bulging C5.  I have no medication side effects. So no doctors to fire.  I just moved and have an appointment w a Neuro listed on this site.  I don’t need a change to my meds except increasing my ketamine/ adding intranasal.  Sounds like you’ve been through the ringer.  I think I’m going to look for a job training dogs.  I apprenticed a dog trainer years ago and it seems like from all my options that would be the best w my CH.  I have had 3 good days in a row. Slept 12+ hrs 3 days ago. First time I’ve slept for more than 5 hrs in 4 years.  It’s usually 30-60min at a clip abd I get whacked.  I think it’s bc I used up my ketamine early and suppressed my CH.  I really want to try an infusion but that’s unaffordable.  

    • Like 3
  9. For the hits that ramp up quickly and don’t respond quickly I have noticed as others have pointed out that technique plays a huge role. If you’re just getting hit and ramping up rapid shallow breathing is fine. But when the beast is raging it’s important to take big deep breaths and hold them for 5-10sec. Forceful exhale all the way, big deep breath, hold....repeat.  That works for me most of the time for the stubborn hits. 

    • Like 3
    • Thanks 1
  10. Hey @FunTimesim traveling cross country for the next couple of days.  Call me when ever.  Seems like we have similar patterns.  I successfully got the house ready for closing.  By bye north east.  Hello Cough cough Florida.  On the road w my pouch.  Any one want to catch up the phone lines are open.  You get all the venting you want absolutely free. Act now. If you don’t have my number but want to talk send me a msg.  

    • Like 1
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