Jump to content

Freud

Advanced Members
  • Posts

    1,186
  • Joined

  • Last visited

  • Days Won

    46

Posts posted by Freud

  1. Thank you everyone, I promise to respond to all in the next 24 hrs.  It’s just been a rough go and getting everything ready for house closing and moving.  Had my first decent day in a while today. Then the hits started at 6:30.  So I at least got my daily stuff done and didn’t get tortured like I have been.  I’m taking a few day drug holiday from the ketamine in hopes of reducing my tolerance.  I haven’t gone through such a dark period in some time and it has never been as tough on me in a year. Oddly I don’t feel depressed, I’m sure it has to do with the fact that I’m taking 18-24g of ketamine a month.  I’m not walking around w self deprecating thoughts or I used to be kind of thoughts. Just life is a real torture and I’d be out of my misery if I died of natural causes.  But today I haven’t had one thought like that. I credit you guys for that mostly. Thank you for all the support!  

    • Like 3
  2. I wasn’t intending on excluding episodics. But I get tired of hearing episodics repeatedly telling me (while I walk them through growing or dosing ) “I don’t know how you do it” (which isn’t exclusive to CH, I’ve been hearing that about my burn recovery since I was 14...”. It’s bc we don’t have a freaking choice!!!  Lol.  But I do take some comfort in knowing I’ll get hit all the time rather than guessing and worrying when I’ll get hit.  If you’re one of the kind souls that has said it to me please know I’m saying this laughing and smiling....  it sucks being any kind of TAC patient let alone any form of CH.  we’re all in it together.  I never accept when others discredit their pain vs mine.  One should never have to endure all I’ve been through.  Pain is pain.  CH pain is next lvl but none the less.... hope you get the point....  all are welcome.  Just don’t want some off the wall BS “I’ve found a cure stuff. As the late Barbie and I used to laugh going through the 65 pages of hits when searching cure on this site.  I think if anything is banned from the site it should be the word cure until medically speaking there is one that’s accepted and peer reviewed...  thanks for brightening my day folks.  Good to finally meet you jeebs 

  3. Thanks all, I’m too spent to really respond but will later today or tonight. My day started at 3am when I hit my third alarm clock and decided not to go back to sleep when I finally got it stopped bc I get hit less that way.  REM sleep is my biggest trigger, what a crock of sh:Pte!!!   At any rate I’ve been staying away from avoiding sleep but I had a 4hr dentist appt starting at 8am...   one more kipp 10 an hr later and smooth sailing until I sit in the chair.  And then my worst nightmare started once the local w epi was injected (happens 50%of the time to me) kipp 10 starts doc is doing a dental implant and then a bunch of crowns if I can tolerate it.  My eye swells up, full on nose clogging, tears running down my face turn bright red from the pain and I’m instantly sitting in a pool of sweat.  Doc is real empathetic being that he knows what CH is cause his sister just came down w HC and he knows CCH is much worse most of the time.  He offered to do it another day but I say forge on.  Work had to be done and family payed out of pocket for all the work and were off to FL nov 1...   I suffer through hyper metabolizing the local don’t bother to ask for more as he’s drilling into my mandible/ jaw. Few min later he offers me nitrous gas aka laughing gas.  I say sure and opt for it over 8lpm of O2.  Previously I got the gas but he’s real stingy with it compared to my old dentist.  He turned it up a bit higher and it helped.  But he had to take it off for some of the work not to distort my face or something.  It took me from a kipp 10+ to a kipp 8. Which is a big improvement for me.  None the less.  I have to go into a family event now in Brooklyn and it’s going to be a long night.  Thank you all sorry I’ve been out of touch...

  4. There was a whole big first paragraph which didn’t copy and paste.  Can’t edit the post will retype later.  Bottom line is CH nailing me w kipp 10s.  Lost most of the progress I’ve made. Will contact mod about error msg when I try to edit and repost...  too burnt out to keep trying...

  5. Any help is appreciated. This is my 6th year w CCH and I’m almost back to ground zero.  I talk regularly with a psychologist am not suicidal (couldn’t do that to my family) but if I had a massive MI from chronic smoking and poor diet or natural causes I’d be at peace. Which I’ve told my psych and he doesn’t blame me or have any advice but to listen.   My parents are as understanding as any one could hope for but they have magical thinking and think a new doc in Fl will have some magical cure that some of the “top experts “ I’ve seen haven’t offered. Or that they will just stop suddenly just as they started.  I know that’s happened to some episodic sufferers but I have no realistic hope of that happening to me.  Gamma knife is not an option I’m willing to consider due to risks and it being experimental as well as my insurance wouldn’t pay for it.  I just feel like a burden to my family and am tired of this torture.  But like I said I could not bring myself to harm myself out of love and respect to my family but when they’re gone I would look into euthanasia as I’ve read others in Europe have done.  I verbalized this to my parents and they lost it.  I feel terrible for letting them know how I feel because it upsets them so much just watching me suffer.  They say they understand how bad I’m suffering but they only know how bad it looks and have no idea how bad it hurts, how demoralizing it is...   Unless you’ve actually felt what a kipp 10 feels like you just have no clue how bad it actually is.  I’m pretty tough when it comes to pain having been desensitized from it at 14 suffering 3rd degree burns to 20% of my body, 15-20 surgeries over the years, cervical neck problems, migraines...  but the past few months and especially few weeks have been torturing the shit out of me.  I was so hopeful when the ketamine showed so much progress and decreased my frequency,  intensity and duration. But I’ve lost 75% of the progress I’ve made.  Busting doesn’t help at all and is not really an option since I’ve decided not to come off my psych meds any more due to risk of being manic or PTSD getting triggered and committed (fyi they don’t give you O2 in the nut house, have to fight to get my ketamine and most places won’t give it to you even if you supply it, won’t give you trex injections and when they do it makes my CH so much worse).  I’ve sat in psych intake told them I was starting an attack and would start screaming and crying and when it did they just thought I was crazy and acting out.  Nothing like 10 security guards coming to restrain you mid kipp 10, strapping you to a bed an jabbing you with a bunch of injections.  I’m looking to hear from chronic suffers that have been in similar situations advice is always appreciated but I’m fairly sure I’ve exhausted all realistic options.  Aside from ketamine infusions and nasal spray which I’m going to plead w my pain doc for next week.  It will be my last time seeing him any way so it’s just a to get me through the move and I’ll be without until I find a doc willing to help me in FL.  Sorry for being all over the place with this post, but I just finished my 6th alarm clock kipp 9-10s since going to sleep and I’m spent...

     

    thanks in advance.  

  6. 14 hours ago, BoscoPiko said:

    Maybe our minds just want so badly to believe that somehow, someway it's something other than a neurological un-curable issue.

    Denial is a bit@! Too. My parents have verbalized several times the may be a new Doc when we move will have some magic treatments that will stop my CCH or make it better. I am/was shocked they really believe that even w the caliber of Docs I’ve see. With my medical background, that when I tell them there is nothing left besides radical brain surgery (my opinion of Gamma knife), and they think a new neurologist is going to “save me”!

     

    my biggest fear is being without O2 and ketamine. I dosed recently and since then I’ve been getting worse. Probably unrelated but not slap backs. It’s been too long. I’m taking a break from dosing and sticking to Vit D, ketamine and oxygen unless another CCH vet has a suggestion...

    • Like 1
  7. There are several brands ranging in quality that go to 25 LPM.  I can tell you that when I switched it was a godsend.  It cuts your abort times vastly. Not all of my CHs respond to oxygen but I will never go back to low flow less than 25. They cost 35-65$. I’ll get the name of the company I use when I get home.  I prefer to use a good US brand instead of cheap China products but they cost a bit more. At 10lpm I get no relief. I use Mtanks and have had great luck w Apria. Befriend your delivery driver and try and get their cell number.  My insurance switched and for a while I just call the dude and they deliver. Never got a bill or anything. I’m scared when I move to FL I’m going to have a problem but I’ll just have to wait and see.  Apria has a vacation/ travel service but since COVID they will only exchange tanks you have and not bring you new ones. So I’ll be driving down I-95 w a car full of M tanks. At one point I had over 20 M tanks at my house and was going through 5-7 tanks a week. Now I use 1-3 since starting ketamine. Once you switch to 25 you’ll never go back!  I have posted the link to the co I bought from in the past if you search my post hx. 

  8. Hi all I am alive and well. My PTSD ended up getting triggered in Dallas as I thought it might. Sorry for my long absence. Thanks to all that sent their love. I will be back on the boards and this thread w an update. Short version is I am now having 4-6 kip 7-9CH a day. My D peaked at 277 w no bump in Ca or PTH. (I was about 150ish before I was admitted unfairly by my psych thinking I was manic and not triggered and I knew it was going to happen so I loaded w 1.5 mil units before my admission. My D spiked to 277 w that and my CH were gone for a bit. But as it burned off they came back as expected. ). I’m going to get w @Batchtoday and go over numbers to figure out a more aggressive load and burn schedule. I am also dosing w vitamin L...

     

    happy trails folks

     

    love

     

    me

    • Like 5
  9. Hi all, I have some great news to report!  I am on my way to being PF and getting my life back thank to so many of you. The vitamin D protocol is doing most of the heavy lifting so to speak. I’m coming off of my best week in over a year but who’s counting. I live in the moment...

    I will give a full update ASAP. I am still figuring out the best way to utilize the ketamine. However it is helping a ton as well. I personally have a super high tolerance to most anesthetics. Therefore. My starting concentration although a moderate dose will probably be bumped up a bit after discussing my usage and results w my doc. I promise I will make a more detailed post ASAP. I think ketamine should be a weapon in the arsenal to treat uncontrolled CH. I don’t find it intoxicating unless I take a big dose 20+ sprays...  10 sprays at (50mg/ml or 5% solution) and I start to get some help. As it is a dissociative (I have not dissociated yet...aka k hole). At 4-8 pumps I feel mild distraction from the CH. usually enough to take an edge off. However if I have down time and a bad CH I will go to 10-20pumps. This is not what I recommend for everyone!  If you do try it. Start low and go slow is my advice. Most people do not enjoy being dissociated from what reading I’ve done on recreational use... but for a kip ten I say bring it on. I have only had one Kip 10 since starting it =-). 

     

    BBL with more info.

    looking forward to seeing y’all in Dallas. 

    • Like 5
  10. Um, 

    He couldn’t state enough how he thinks the conference is going to be life changing for me and every CH patient especially CCH. Should attend at least once. He thought I have been dealing w CCH a  longer than 2 years and said “Oh man, you’re still new at this.”  He stayed several times he would like to spend time with me st the conference and talk more. He said he has several veterans he wants me to meet and would introduce me. He mentioned a few of you guys. 

    He said although the emgality data wasn’t that good for CCH he does have a few patients that have responded. And not just w reduction of CCH. He said “home runs” like he hopes for me. He wants to get me back to work ASAP. He was very supportive of @Batch‘s work and told me to keep following his lead. Don’t wait keep busting. Don’t wait on emgality, start it now. It takes some time to get. Insurance rejects it, he appeals, they reject again, he contacts Lilly and gets me in some kind of free program. I don’t have to do a thing but wait :D  my old doc didn’t know or do any of that. Just wrote the script (the wrong one I might add(I never tried to fill it)). 

    He is concerned about me making it to Dallas on a plane. Offered me prednisone to start before I go. I told him they didn’t do a thing for me the first time I tried them and with a couple of board members having hips done recently I’d pass. My plan is to use the max amount of trex I can a day (4 zembrace) if needed and pay for it later...  especially on the plane. But my friend who came with me told him  “he’s tough as nails and wouldn’t have a problem. I would get there fine.”  I drive during kip 8-10s. I try and not drive w 10s. But some times it happens. I keep a M tank in my cars. Some times it works some times it doesn’t. My first CH was a 3 hr kip 10 30 min into a 3.5 hr drive...  it’s not for everyone and not too many people have had 25% burns...  I just have to maintain some kind of life...  I can’t operate/ work with one but I’m thinking about switching to the dark side for a while and doing something in industry...  have to give this D more time to kick in but if all I have is some kip 4/5s and I can get a little more sleep than I have been I could do an industry job. 

     

    Think thats basically it...

    i forgot to ask how long it might take to see results w emgality. Will find out in Dallas when we talk again. Unlike most docs he wants to leave my f/u appointment up in the air and corresponding with him him sending him updates would be more than sufficient for now. He can refill my ketamine electronically as well as the emgality when I get it...

     

    fyi to anyone getting ketamine nasal spray. Price varies a lot. I’ve been quoted $225 for the full script as well as 60$. It’s a slimey world out there. One place said “it would be cheaper for you to get it off the street!”  I just hung up :P  I will make a post about my early experience w the ketamine from strength of script, what you need to have your doctor order as well as how it helps me and all it entails...

     

    sorry to hijack this thread but I don’t want to make a post titled my appointment w dr...  just seems strange to me

    • Like 2
  11. So folks apparently there is a lot of confusion about the dosage. From the horses mouth: Dr McGeeney said the correct and only dose for CH is 300mg a month every month. He said everything else is only for migraines!  He said the correct info is on their site if you look in the right place. My previous doc wrote the wrong script as well and he was a major headache center guru!  I never tried to fill it. I have started the process to get it...  let y’all know when/ if I try it. I say if cause I’m pretty sure the D is starting to work!  I’m not PF but it’s a hell of a lot better yesterday and today. Today was the last dose of my second load w target 25(OH)D3 of 140!

    • Like 1
  12. On 8/25/2019 at 9:30 PM, Psiloscribe said:

    It sounds like you've been prescribed the migraine dose of Emgality. The cluster dose is 300 mg and comes in (3) 100mg injections. Have your doctor check out the eli lilly website for info on prescribing instructions for clusters.

    Now I’m really confused may be the 3 injections wasn’t crazy. I know I read 2 a while back and my doc said 2 then 1 every month after... we shall find out tomorrow. 

  13. Bravo @Batch, Its like explaining a cardiopulmonary bypass strategy...  enjoyed the physiology.  I have a real hard time hyperventilating. And for me when I force myself to do it. Usually an hour after my normal routine of using a regular old non rebreather mask and I’m at the I’ll try anything point. I break out the opti with the mouth piece and do the whole routine. Each method and no response. Well no more than if I go back and just breath the 25LPM gas. Now I know what you’re going to say next.  You waited too long. But I have done it as a first line for over a month and I get the same results. So I stay comfortable, breath at a fast rate w my plane Jane mask and if the O2 is going to work I abort in 2-3 min stay on for 10-15. Unless I fall asleep and sleep through my timer. Lol did that last night. Ran through a fresh M tank. Fortunately I don’t have COPD w CO2 retention...  But 99% of my nocturnal CH alarm clock attacks (every 45-60min) respond quickly and abort. Few of the nocturnal attacks that wake me up already at a kip 10 and no 1-3min ramp up take 30-45min to break if they break. But the longer I’ve been CCH I wake up before the CH starts!  And I’m like hmm I don’t have to pee WTF did I wake up for. Then I try to go back to sleep and then the ramp up starts. It’s real strange. So when I’m alert enough to know what’s going on. If I wake up suddenly I just hit the O2 for 10 min and go back to sleep. 

     

    I know sience as well well as friends w CH say hyperventilating is the way to go as well as the beautiful opti mask is superior (I love the way it feels on my face but they purposely don’t want you to fall asleep w the mask on and I get it. I want to lie back and breath or pace and breath. Not hold a mask or mouth piece. Every bit of comfort helps when I’m mid hit which is most of the day. 

     

    TLDR: Thanks for the post Batch, I support and suggest all of your suggestions to other CHers. But it doesn’t make a damn of a difference to me sadly. I’m just not responding normally to any of the treatments but they still help a ton  

    I guess the next step for me is a 30-40Lpm reg...Apria is going to love that  lol

     

    Unrelated note :o our greek friend’s GF is pain free after starting the D program and Benadryl. I asked her to fill out the survey and post about it...  she is CCH too =-)

    • Like 1
  14. And thanks for the emgality update. I’m seeing bostonheadachedoc tomorrow and we’re going to talk about emgality. I’m pretty sure you’re not on the right dose. It’s a double injection first dose and one injection every month there after. My former doc said it can take months to work so don’t give up yet. All this info is based on his edu of me as well as a little reading. But I’ve heard docs writing it all kinds of crazy ways. 3 injections the first month...  I’ll get to the bottom of this tomorrow, I’m fairly certain BHD was one of the investigators/ sites but I could be completely wrong. He may have just had patients enrolled in the study...

    • Like 2
  15. I’m out of likes for the day =-( but @Dan32 brought up a very good point. There are mixed feelings here about verapamil. Most of the regular contributors here have tried it at some point. I was on 800mg a day until I stopped it months ago. It is important to get an EKG every time they raise your dose as well as check your blood pressure. I tolerated up to 800mg any more gave me blurry vision. I was about to wean it off when my Ch started to get worse I decided not to change anything. But i was fairly sure it wasn’t doing me any good. I now get hit all day and every hour I’m sleeping. But I did get a side effect called calcium channel blocker released peripheral edema. Additionally bc I was in such an “over dose” my cardiologists words ( my neuro insisted on a cardiology follow up after raising each dose when I got above 300+mg a day) I got anasarca it total body swelling. I knew my stomach was getting bigger but I thought the wet gain was from another drug. One day I looked down at my belly. Hopped on a scale and I gained over 15lb in a few months. Next day my legs blew up like balloons.  Called my cardio we rapidly weaned the verapamil half way, then titrated it off over the next couple of weeks. Edema left w a little help of Lasix and I was back to normal in no time. But there are many folks it works miracles for. Like batches D protocol mentioned above. Everyone is different and our CHs change all the time. A little experimentation is in order. I should also warn you verapamil has been a potent blocker for some folks that try to bust. So if you want to try busting. Many of our first line treatments. Don’t start the verapamil yet. Don’t be afraid to discuss all these options give your doc this website and encourage them to take a good look. There is a busting/ mm study that just finished up at Yale. And a study in Switzerland enrolling patients for an LSD study. Busting is a safe (for most read precautions) and effective way to either prevent s cycle or abort one. Hit the blue button at the top of the screen...

    • Like 1
  16. The MRI will rule out anatomical anomalies that cause CH like pain. Your Ch is considered chronic if you go a year with no more than a 3 week break. A few things to get this rolling. First imitrex pills are next to worth less. Try and get the imitrex injections. It’s best to get the 6mg shots and break them down so you get 2-3 doses per injection. The injectors stop a CH in 5-15min. You should have oxygen as well. It’s a life saver. Often aborts an attack in 3-10min.  Lastly the extended release verapamil is not as favorable as using the 80mg immediate release tabs. But if it’s working for you then great. Also @Batch has a vitamin D protocol that has helped a lot of people.

  17. The start of a cycle or the disorder itself presents in many different ways. I’m chronic so I can tell you what happened to me when it first started. I had attacks of severe tooth pain for about 4-6weeks on and off. A little facial pain as well. Then out of no where I got struck while driving alone on a 3 hr trip about 30min into it. It was a full blown kip 10. I knew either an aneurysm was about to rupture or I was having my first CH (I’m a PA and had briefly studied headaches while in school).  Since then I’ve had CHs every day...  I did get a 2 month brake before I was put on a med that was a blocker and had a long half life... but when my CH came back they just started full throttle. Many people report a ramp up when they start as well as associated symptoms with out a CH like my tooth pain. Sinus pain/ pressure, facial pain, eye and scalp pain. Then some time later (days to weeks) the CHs start. 

×
×
  • Create New...