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Stumped, worn out and looking to hear from other chronic’s


Freud
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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.  

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I’m never good at this-at all. Anyway, it’s obvious that you are going through it. I don’t know your psych and don’t recommend blasting it. However, lamotorgine is a miracle drug for depression and that’s coming from a crackpot whose had his brain fried 60x by the shock docs. You have to titrate it to prevent Steven Johns, but at 100mg (low dose btw) I came out of a 25 year depression coma, I’m only 38. Lithium ER has some evidence in treating CH and it will help lability, most only need 900 of the ER, sweet spot is .8

For the attacks I get them. This is extremely controversial on here, but being a fellow brother in arms nut job, you are privy to neuroleptics. Get a hold of a dopamine agonists, a good one, like haloperidol and try that out. Another taboo option on here amitriptyline. Both will knock you out at least, the best choice possible. Most important both target receptors in the brain that have been under research for over 30 years for CH research. The first research that I see was on said drugs. I’ll skip the science. Will it work? No promises.

In India, they are going mega hardcore and using Clozapine, which if you recall can fatally lower your white blood cell count. That said, if you check it every week, you should be fine. I don’t know if your are in the US, but it’s federal law that they do: they put you in a federal database. It’s more hardcore than Thorazine (the famous Thorazine Shuffle not sure if you had that pleasure in the looney bin). It will ensure you rest.

Third option, antiemetics, some do work-Phenergan comes to find. Phenergan/promethazine actually is a neuroleptic from the 1940’s.

Fourh Option: Keterolac. Another taboo to most. It’s just a potent NSAID that Robs Peter to Pay Paul.

Fith Option: My Preferred, Prednisone taper. If that doesn’t do it, hats off to you. You earn the you are going through some serious shit award. I won’t get into how that works, but I have yet to see a case where it doesn’t calm down. 
 

Final Note: I’ve seen others (other forums pop on search engines) bring up CNS stimulants. Unless narcoleptic, in mild cognitive impairment, controversially used for chronic fatigue, and dependent on just who you ask ADHD, then Methylphenidate and Amphetamine Salts, even Straterra seems a dangerous idea. Without getting into it, it gets back to D2 (Dopamine). I took several of the controlled CNS for several reasons outside CCH and Chronic Migraine, all of my headaches improved to some degree by stopping. Most of that research as conducted in the late 90s mid 2000s. I’d go as far to say that it’s mostly in the backwaters of Neurology for treatment of headaches.

Never-mind the potential for misuse, the trials were small, from what I can tell not well conducted, and it’s just a bad idea.

Im actively pouring through every academic database in attempt to find you the latest abortive pharmacology guide for primary headache to take to your GP or headache doc if lucky. If you haven’t tried Baclofin and Tizanidine for prophylactic use, it’s worth considering. And for the record, I’m not for polypharmacy use or big Pharma; rather, just getting some mother f$&king relief.

 

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I have enclosed two sources of information for your GP or specialist. One is the latest pharmoclogic guide for CH (to sparse and already known). That’s is in PDF. 
 

This is a link to a PDF with Full Open Access-all 151 pages-from the most recent journal, well open access, 2018 11th European Headache Federation Congress Jointly with 31st Congress of The Italian Society for the Study of Headaches 

https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-017-0817-z.pdf


You will make it through, one second at a time. My thoughts go out to you. I’m in the middle of it as well. I just have my own way of going about it that would upset people.

Though, not as bad, I am in pain, but found ways to mange.  2 years ago I was shooting up 2 DHE, 1 Keterolac, and eating 5 Butabital/APAP/Cafeine/Codeine and I won’t list the prophylactic use. It got out of hand. It’s a process. One day at a time. I quit everything but Dopamax and a home derived NSAID cocktail. It’s a long story. Good luck. Gotta black out from pain.

If you need any other medical information, journals, clinical trials (surprising amount exist), things of that nature, send me a DM or better email me. I gotta go. It’s getting time to pass out.

Brandt2020_Article_PharmacotherapyForClusterHeada.pdf

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I'm at a loss for words but you know I'm there for you buddy. If you try to contact me please use signal, I hope it works with a dead phone number. My phone service is down since I'm pretty bankrupt from having CH all year. A tough year for a bunch of us for sure. I pray you can find something to make this better.

Edited by xBoss
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I got nothin to add my friend but you know how to get a hold of me if you need anything.  I hope like me your just in a temporary low point and you will bounce out of it soon. This shit is not really that fun and we all know how you feel. Answers are hard to come by but you know as well as anyone that you just gotta think out of the box sometimes cross your fingers and eat some crap that you think will help enough to get you through the day. 

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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...

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What they said. 

But now here I go blabbing my mouth off even though I'm not chronic, and you have probably long been very well aware of the Jesus Shot, but yeah last I heard it was (anecdotally) showing better results for chronics than episodics. I even tried searching the forums for Freud Jesus Shot, to confirm my assumption it's nothing new to you, but came up empty, so this is me saying the dumb thing. :(

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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 

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I'm chronic x 5.5 years now, which came after 36 years episodic. I'm OK with 3 attacks at night aborted with O2 but there are six attack nights, and the nights where the last attack won't go away until I get up and shower. I am just starting my busting adventure so have nothing to report. Currently I'm on verapamil and maybe if I took a higher dose I'd see some results but my BP is on the low side. My mantra when things look their darkest is, "This is temporary." Or, "If you find yourself going through hell, keep going."

I did have five and a half years of bliss due to Vitamin D regimen but recent medical issues/antibiotic therapy seems to have busted my good fortunre.

BTW I also live in the Northeast

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15 hours ago, Freud said:

 I just feel like a burden to my family and am tired of this torture.

I so get this statement.. I am not chronic and pray I never become so, I have suffered a serious bout of depression from the "not knowing" when I will get hit as well as how many things I have had to stop doing when in cycle. Many times I have talked to my husband about not wanting to live like this or make him live like this. It is so easy to feel like a burden and in some degree at certain times we may be, however you seem to have a good grasp on the affection and love that your family has for you as well as the pain that would be inflicted on them if you left, my husband always tells me "don't leave me". I am  located in the land of skittle farting unicorns (CA), and it is hard to get help unless you are compliant with many rules and regulations. Bottom line is that in the end there is always one moment worth living for. Maybe it will be a moment that you are not at a kip-10 and get to watch one more God given sunset, see a new baby be born into your family, hear your Mom or Dad laugh or  just have a moment of brain peace. I wish I had more to offer other that being a friend but I don't . Hang in there!

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....Brian, my admiration for you and what you go through, your support of this family, and your ability to come on here with personality is immense..... just not quite as immense as the frustration with my own inability to offer anything other than vibes, prayers, thoughts and pleas to the universe.....

....have always thought maintaining my sanity thru this whole ride has been my best achievement…clusterheads in general, we gotta be some strong freaking people. you got this, and we are here even if you just need someone to listen....

Edited by jon019
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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!  

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@Freud I’m so sorry you’re going through this. Reading your post made me tear up, and is all too relatable. Have you ever tried the d3 regimen? I noticed you didn’t mention it. It might be worth a try? Please don’t give up. There’s not many of us chronics out there, but those of us that are need to stick together. I’m going through it myself. The covid vaccine made my clusters angry. You have all the support on this website, I can promise you that. Take care, stay strong, keep us posted. 

all the best 

Kat 

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@kat_92yup I’ve tried it w different degrees of success.  Batch has been amazing trying to help me. My CH doesn’t stop or get better until my D is @or above 150-180. Get cessation after 200. This is pretty high to maintain and keep PTH and Ca in normal ranges and I need frequent labs my insurance won’t cover or find a doc comfortable pushing the limits. I still take it and batch has contacted me to try a new D and see if it helps. There is a doc in FL that specializes in high dose D if I recall. Will find out more info today from @xxx. 

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@Freud yeah because even if it lessens the intensity a tiny bit, something is better than nothing. That’s how the regimen works for me. I still have headaches every single day, but they’re more like intense shadows rather than attacks 

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On 10/6/2021 at 9:25 AM, Juss said:

I’m never good at this-at all. Anyway, it’s obvious that you are going through it. I don’t know your psych and don’t recommend blasting it. However, lamotorgine is a miracle drug for depression and that’s coming from a crackpot whose had his brain fried 60x by the shock docs. You have to titrate it to prevent Steven Johns, but at 100mg (low dose btw) I came out of a 25 year depression coma, I’m only 38. Lithium ER has some evidence in treating CH and it will help lability, most only need 900 of the ER, sweet spot is .8

For the attacks I get them. This is extremely controversial on here, but being a fellow brother in arms nut job, you are privy to neuroleptics. Get a hold of a dopamine agonists, a good one, like haloperidol and try that out. Another taboo option on here amitriptyline. Both will knock you out at least, the best choice possible. Most important both target receptors in the brain that have been under research for over 30 years for CH research. The first research that I see was on said drugs. I’ll skip the science. Will it work? No promises.

In India, they are going mega hardcore and using Clozapine, which if you recall can fatally lower your white blood cell count. That said, if you check it every week, you should be fine. I don’t know if your are in the US, but it’s federal law that they do: they put you in a federal database. It’s more hardcore than Thorazine (the famous Thorazine Shuffle not sure if you had that pleasure in the looney bin). It will ensure you rest.

Third option, antiemetics, some do work-Phenergan comes to find. Phenergan/promethazine actually is a neuroleptic from the 1940’s.

Fourh Option: Keterolac. Another taboo to most. It’s just a potent NSAID that Robs Peter to Pay Paul.

Fith Option: My Preferred, Prednisone taper. If that doesn’t do it, hats off to you. You earn the you are going through some serious shit award. I won’t get into how that works, but I have yet to see a case where it doesn’t calm down. 
 

Final Note: I’ve seen others (other forums pop on search engines) bring up CNS stimulants. Unless narcoleptic, in mild cognitive impairment, controversially used for chronic fatigue, and dependent on just who you ask ADHD, then Methylphenidate and Amphetamine Salts, even Straterra seems a dangerous idea. Without getting into it, it gets back to D2 (Dopamine). I took several of the controlled CNS for several reasons outside CCH and Chronic Migraine, all of my headaches improved to some degree by stopping. Most of that research as conducted in the late 90s mid 2000s. I’d go as far to say that it’s mostly in the backwaters of Neurology for treatment of headaches.

Never-mind the potential for misuse, the trials were small, from what I can tell not well conducted, and it’s just a bad idea.

Im actively pouring through every academic database in attempt to find you the latest abortive pharmacology guide for primary headache to take to your GP or headache doc if lucky. If you haven’t tried Baclofin and Tizanidine for prophylactic use, it’s worth considering. And for the record, I’m not for polypharmacy use or big Pharma; rather, just getting some mother f$&king relief.

 

Thanks for all the info.  I’m on zyprexa and depakote...  I don’t really suffer from depression.  Other than I have no interests and a touch of loss of appetite.  However I always gain wt from the meds. Just lost 35lb I intended to bc I was way over weight. I don’t wake up sad or anything. But then again 90% of the time I’m woken by an attack and say OXYGEN...  and don’t think of anything other than bathroom and oxygen.  Doing the pp dance while on the Oxygen sucks.  For now I’m staying on these meds unless I happen to find mescaline. Then I’d detox and try it...  MM and L seem to not be helping. Going to tweak the vit D Oxygen and ketamine.  Best was when I had oral and nasal. I hate having to take them. They taste vile. But you also tire of pumping it up your nose all the time. So switching back and forth helped. I need the MJ juice to sleep.  Or a huge Thorazine shot. 

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15 hours ago, Freud said:

Thanks for all the info.  I’m on zyprexa and depakote...  I don’t really suffer from depression.  Other than I have no interests and a touch of loss of appetite.  However I always gain wt from the meds. Just lost 35lb I intended to bc I was way over weight. I don’t wake up sad or anything. But then again 90% of the time I’m woken by an attack and say OXYGEN...  and don’t think of anything other than bathroom and oxygen.  Doing the pp dance while on the Oxygen sucks.  For now I’m staying on these meds unless I happen to find mescaline. Then I’d detox and try it...  MM and L seem to not be helping. Going to tweak the vit D Oxygen and ketamine.  Best was when I had oral and nasal. I hate having to take them. They taste vile. But you also tire of pumping it up your nose all the time. So switching back and forth helped. I need the MJ juice to sleep.  Or a huge Thorazine shot. 

Divalproex and Olanzapine are the heavy hitters, the TKO for weight gain. The last thing that you need is polypharmacy, Toprimate will counter that weight. Oddly, these doctors will try that on Cluster Heads, the research to support is conflicting.

Topamax is known in the headache community as Dopamax. If you can get past the neurocognitive issues, it gets better. I lost 65 pounds, all the weight gained from Risperidone (similar to your olanzapine) and Duloxetine. I can't understand, the first and second trials failed. Now on the third trial, Toprimate helps substantially.

I am the freak show: I was off all blockers with the 5 Vit M attempts, and Don’t make plans L (7 or 8 attempts) provided everything Huxley described in The Doors of Perception, nothing for the headaches.

You may have tried, or be describing Migranal, it has a similar method of action as Ketamine. The dihydroergotamine. 

I have enclosed the following for you: 

Comparison of Intranasal Ketamine, Dihydroergotamine, and Valproic Acid for Abortive Migraine Treatment in Pediatric Emergency Department.

Respectfully, it is all relative. It will get better when the damn headaches leave me alone, I take a break and go to an indie book shop. And I go on a book bender. Treat yourself when well. If it's a nice bloody NY Strip and Double Mash at Ruth Chris (if your favorite steak house) go for it. 

Sometimes, weird as it seems, cleaning house and cooking. Here, Pastore’s and some of their Sun of Italy products make for good cooking. Pastore’s Don Pipino works every time- Roa’s is too rich for my blood. 

Take the great with the shit. You have appeared to have a solid grip on the issues that come with being Chronic. 

3754_ihc-2019-poster-final-8.8.19-pdf-for-online-poster-forum.pdf

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I was referring to michael Jackson and his illegal use of propofol by his cardiologist.  I’ve had it one too many times in the operating room. But there is no role for it w CH...

 

 

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WHOA - that was my typical sort of mistake - I made the overly long leap of a stretch and interpreted "MJ juice" as "marijuana juice" - as in a THC/CBD tincture or some such. Thanks for setting me straight, and never mind now about the MJ juice!!!

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Hi Freud

I would ask you to try with a radical short nutritional change.

 

Whenever my cycle does not want to end, then I do it.

It works within 4 days with me when I'm iron and stick to it.

 

It's very easy to eat there are only a few things during this time.

 

Apples, potatoes, oatmeal, coffee, water.

Approx. 1 kg apples a day, from the supermarket without shell! Own anzeits best with shell.

 

1-3kg

Potatoes I cook with shell without salt!

Until they are quite through, rather too little. Then I peel it in cold water.

 

500gr mix at work

The oatmeal I eat with a mixture of water and apple porridge and linseed oil.

 

I only drink water without carbon dioxide, and with extremely low calzium salary with 26mg.

For values over 100mg developed I strangely strong pain.

 

And the hardest for me. Absolutely no chocolate! coffee without milk!

Little sugar! (and no sugar-free things, sweets etc ..)

Only these things otherwise nothing 4-5 days!

 

Would be glad if you try it, and tell us ..

yes it worked!!

If not I would order a pizza home for compensation :-)

 

ps:

If it is only possible somehow, forget these drugs for your thought head.

I am a damaged by you, Restless Legs..

 

Greetings and painless hours!

 

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Eating is one of the few pleasures I have left. Lol. I have been suggested to try keto, this diet that diet.  Unfortunately I am chronic and it’s not just a matter of getting my cycle to end...   you’re diet is interesting how did you come up with it?

 

thanks for thinking of me

 

 

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