I do not suffer from cluster headaches but have suicidal depression, I've tried everything

[GBeth]

After researching the affects on psilocybin, I have a hint of hope that I could possibly get over being chronically suicidal. Does anyone know where to get this treatment? I'm desperate. I live in wilmette  near Chicago, can drive

[xxx]

Dear GBeth,

Check your PM InBox.  I've sent you a message that should help.

Take care,

V/R, Batch

[ThatHurtsMyHead]

GBeth,

I sympathize with your situation.  In some ways it seems similar to having CH.  I would ask that you use caution in any decision you make on treatment.  I don't know if it's fact or fiction, but when I did my research on self treatment many years ago.  I read a good bit about psychedelics triggering deeper psychological issues in people that already had them, or had latent issues.

If you do seek self treatment please make sure you have good set and setting:  https://en.wikipedia.org/wiki/Set_and_setting  Set and Setting is important for not only the experience, but for the after experience as well.  A good sitter should not drink or take anything during a dose, and should also have a very good understanding of Set and Setting, what they should do and some things they should not do while being a sitter.  A peaceful listener in my opinion is the best sitter.  

I'm certainly no doctor, nor have any experience with the type of challenge you're experiencing, but wish you luck, and sending you positive thoughts for your recovery.

Love all,

J

[Pebblesthecorgi]

Suicidal ideation is serious stuff.  There is very strong evidence that therapy with ketamine will knock out the harmful thoughts and allow therapy to progress positively.  I personally believe it would be a harmful idea to attempt to manage your situation using psychedelics without knowledgeable support.  Depending where you live there are an emerging number of practioners who know how to use these medications effectively.  Please seek appropriate support.

 

[Pebblesthecorgi]

Suicidal ideation is serious stuff.  There is very strong evidence that therapy with ketamine will knock out the harmful thoughts and allow therapy to progress positively.  I personally believe it would be a harmful idea to attempt to manage your situation using psychedelics without knowledgeable support.  Depending where you live there are an emerging number of practioners who know how to use these medications effectively.  Please seek appropriate support.  This is a study now enrolling again that you might consider.    https://clinicaltrials.gov/ct2/show/NCT03866174  Also there is a multicentered study going on sponsored by MAPS.  When conventional treatments fail its is worth looking at some of the sanctioned research.  T

 

[Snowflake]

Hi guys,

I am sorry if this seems like i am hijacking this post, however it caught my attention. So instead of starting a new post, i thought i could get my answers here if nobody minds.

As per all my previous posts I am an ECH sufferer from the age of 16. I just turned 41 on the 16th of September.  Yes, I hang on to the hope of it going away at this age as per my neurologist but if this journey has taught me anything, its to not put all your hope in one place.  Let's just say a part of my inner self wants to believe this can be possible.

Moving on, my last cycle ended after one year roughly around my birthday in 2019.  I had a Sphenopalatine Ganglion Block done.  They opted for the "needle" through the side of my face route instead of the nasal cavity. Was painful. No anesthetic besides the local the rubbed on the skin before insertion.

After the block I had 3 days PF and then a week of CH and then they stopped. I am till this day, not sure if the cycle ended or the block helped. I wont be hopeful there either.

So I just wanted to know, pertaining to "Suicide", 

The thought is constantly in my head (or whats left of my head) every damn day, whether I like it or not.  I have days where I don't think of the beast returning, however, I feel suicidal. Heck, i attempted suicide twice and then realized that it was not my time since obviously my ghost is not typing on here. (Some one needs to teach me how to tie a knot properly and Co2 tastes terrible and gets messy lol)

Also, the thing that seems extremely magnetic to the thoughts of suicide are the terrible depression and anxiety I constantly live with every day to the point that I dont know whether to hope the cycle starts or what?  I am not eating properly and lost 20kg's from being at 78kgs.  I am a real a$$hole towards people and i am unable to control it, nor can I defuse the situation if I tick someone off as I get hot headed even more and given the fact that both my hips are replaced, I would be pulverized, should things get nasty.  But this "attitude" of mine wont let me calm the hell down.

Yet I was never like this before. Seriously, I wasn't. Batch can vouch for me, he spoke to me a while back.

My question is regarding this Ketamine Infusions.

I have researched it to a certain degree and from a "normal" persons perspective, and it sounded like candy to me. 

I called the clinic that specializes in this infusions here in SA, and they are obviously willing to drench me with it, however, I wanted to hear what you guys have to say about it from a CH point of view?

Is it really safe? will it bring on a cycle? Does it really help for someone in my situation?

As mentioned, I am depressed, suicidal, anxious, in pain from the new hip joints since i lost weight, the muscle is frail and can hardly hold up my new prosthesis's (if that's even a word for multiple Prosthesis lol)

Please also bare in mind that I do not respond well to any sort of drugs. Even simple things like weed etc. It just makes me paranoid.

So i stay away from drugs and alcohol and have been so for all of my life, except for the time I tried them of course.

I decided to OD on O2 should he return going forth and nothing else. Not even the D3 regimen since that was a fail and I didn't respond well to any of the stuff I tried.

Yes some are going to say that I did them wrong and didn't get the correct stuff etc, and you are correct. That's cos SA is the shittiest country on the planet and no one like helping others here.

I am tired of being treated like a drug addict during those mornings that I find myself in the ER before they give me oxygen, you know know those times also, I'm sure... when you could kill the Dr and the nurses for seeing to you after the beast has grated half your brain out and all yo wanted was a "breath of fresh air" cos you ran out.

I have made peace with the fact that I am a sufferer and may or may not proceed to be one going forward. However, I want my next few days, months, years to be "normal" and if you think Ketamine could do this, then please leave me a comment.  It is expensive and as we all know since CH are not classified as a chronic condition by medical insurances here, we have to dig past the holes in our pockets to hopefully find a penny in our shoe to pay for all the meds, Oxygen etc. Hence I run out.

Hopefully, someone can improve on an O2 machine that will eventually generate the flow rate and concentration that we require, instead of people like me wheeling a tank up and down, fking up my hips even more every 3 days (During cycle)

Everybody responds differently to stuff. I posted this in the hope that I find my difference.

PF Wishes Buddy's

Mind the spelling and pardon my sarcasm, the author has nothing left on the right side of his head.

 

 

[Pebblesthecorgi]

@Snowflake 

 

Lots of stuff going on my friend.  Stay strong and determined.  Life is a gift and even if you have to eat shit a lot the times in between offer you an opportunity to make the world a better place.

 

Regarding suicidal ideation.  This is very common for clusterheads.  We all know its is true and survey data and personal stories all support the disproportional number of folks who choose to exit this earth and reenter the cosmic stream.  The option of suicide can be empowering because you have the control NOT To Do It.  Its good to have options and no one can take that away.  It is much better to deny the beast the pleasure of self destruction and seek ways to improve the world.  That way everyone wins.

 

Ketamine has remarkable potential to help break a cycle of suicidal ideation.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4380583/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5356805/

https://www.psychiatrictimes.com/view/does-ketamine-hold-promise-mitigating-suicide-risk

http://scivisionpub.com/pdfs/titrated-serial-ketamine-infusions-stop-outpatient-suicidality-and-avert-er-visits-and-hospitalizations-918.pdf

 

Now pay attention, this is important:  The efficacy of ketamine and other classic psychedelics is in the context of knowledgeable directed therapy.  These approaches need to be supervised by someone with familiarity and mental health training.  The drugs put one in a state of mind to do the difficult work of therapy and get favorable long term results.

 

Sure there are folks who believe they can do it alone, don't need help, the drug itself will get you what you need.  This is patently false and dangerous when done by someone who is in mental distress of has an underlying psychological problem.  Psychedelics in a mentally healthy person can be a great tool of self exploration but an unstable soul can get in real trouble with self directed trouble.  There is an enormous upside to using psychedelics to treat a variety of recalcitrant mental health conditions but individually guided therapy is a recipe for a bad headline.

 

Be strong, stay strong, figure out how to get what you need.  Knowledge is   empowering

[Snowflake]

Thank you for responding. It means alot to me. I hear what you are saying. I can only hope that this Dr knows entirely about cluster headaches. Upon chatting with him, he mentioned that he has administered this to CH sufferers and it helps them deal with the PTSD . Even so, upon my consult with him face to face, I will bombard him with further questions to try and gauge whether he really does know what he is doing. The trouble in SA is that sadly, Ch awareness is pushed under the carpet which probably sits on an unmarked grave. I do try to raise awareness wherever I can. Finding more of 'us' is a challenge here. However your inspiring comment about me finding or having a purpose here to fulfill, gives me joy, I must say. I find myself just staring at a blank wall some nights. I feel the need to keep my mind busy in order to keep my mind from being filled with negativity. Look up at the ceiling for a place to tie a rope... It's difficult my friend. Suicide seems like such a wonderful thing to me. But you know, leaving everyone behind is not easy either. So that balances that thought. 

I will give Ketamine a 'shot' and when I do, I will be sure to enlighten you and the rest of my experience. Maybe it will help others. 

Been a pin cushion all my life. So what the heck.

And thanks for the heads up. I appreciate it.

Pf wishes

[Pebblesthecorgi]

I would continue to caution and emphasize nuanced differences.  Do not let desperation be your guide.  There is much confusion regarding psychedelic treatments and expectations.  When it comes to psychiatric conditions like PTSD, treatment resistant anxiety, treatment resistant depression and end of life trauma psychedelics act like a conduit to facilitate active therapy.  To achieve maximal benefit the psychedelic therapy should incorporate preparation, a psychedelic experience in proper set and setting with a knowledgeable guide/therapist and meaningful integration.   This can take many forms and most societies have appropriate folks to serve these roles.   

Cluster headaches are a bit different.  intervention with the psychedelic may actually be therapeutic without all the other support.  Sure being properly prepared and tuned in makes the experience positive and certainly the "afterglow" helps deal with some of the life altering effects clusters cause but psychedelics seem to have robust effects in many to space out or stop cluster cycles.  We still need better evidence this really works but it sure seems to have promise.

So taking ketamine by itself even if the administrator has skills solely related to safe administration has the potential to be effective for cluster headache relief.  If you want it for anxiety or PTSD adjunctive therapy is important.  If you do pursue seeing a person qualified to administer ketamine therapy be sure to ask them to include some decadron (steroid) and have the high flow O2 available.

 

 

 

[Snowflake]

Hey there buddy,

Thank you for replying.

I don't know that some of us do not even have the capabilities and energy anymore to even look at our computer of phone. 

What concerns me the most right now is that I am in a place where I am due for a cycle but he never shows up. I really don't know whats worse anymore. its like come on lets get this started instead of a shadow peopling at me 5 times a day.

I am hooked on proscription ant OTC medication to try to "numb the way I feel inside.

Friends, I have no control over my enthusiasm.  Simple things that i used to do to keep my mind busy where ever i can has become a challenge to even get up of the sofa to take the initiative to fix etc.

I want confirmation that it am not the only one feeling this way, cos It would make me feel that this feel may minimize or go away if i am lucky.

I am dues for the season to have started a few months ago. But nothing had happens except a manipulating game of shadows, which makes me terrified.

I really appreciate all the support i receive from this group and yes, suicide is like waving candy at me. No I didn't go as yet for my Ketamine shots due to finances and can only schedule them probably in the first week of December.

I am sure you would all agree that this condition actually creates such a ripply effect that we feel as if no one would 'truly" really ever understand it from our point of view.

It is exhausting to even try to explain to anyone. And then there are those that mock the condition, and even though I always say that I would never wish this pain upon anyone, I sometimes which they experience it just once.

A cry for help eventually becomes an annoying situation of someone that keep complaining. Yet you still have responsibilities and people to answer to.

I am struggling with fear. depression, anxiety and I am hooked on meds just to numb my emotions and in a way hiding from the shadows.

The only thing that i find solitude in is music. Feels like i am "stuck" and the world is still turning, It weird.

I hope this infusions can extract me from my vessel and help me re-asses my purpose here and also restore my will to spark an energy that would allow me to continue moving forward.

Work thinks I need time out as i snapped at a process partner that wasn't playing his part in an important act of duty, since 2018. So I lost my mind and I guess its becoming impossible to contain the damage that has already been done all these years, whilst expecting no one to understand.

The only thing I try very hard to do, i distract myself wherever i can.

From experience, can someone please tell me if this is normal to feel like this (Exactly 1 year since the last season) or am i missing something?

Is my mind subconsciously re-living the torture with out the pain and giving me all the side effects?

I just came here to vent and hopefully find some answers. I hope its ok.

Thanks

 

[spiny]

It most certainly is 'okay'! I know that many here have suffered the same angst that you are going through now. We worry till it shows and really worry if it just teases us with shadows. 

You have your appointment set for December? Very good. Now, just mark the days off on the calendar. The threat of a cycle can be horrifying. On the other hand, if it fails to show as expected, we are a nervous wreck! I don't think that numbing works. Or perhaps not for me. I keep the meds simple to fight with. 

Are you doing the D3 Regimen? Have you done it? It can provide amazing help for CH. 

When in shadow, expectant mode, I prep everything I might need. Make sure that I have my ducks lined up properly to fight. Being nocturnal, I grab caffeine every evening, want it or not and down some. Be it coffee or a caffeine pill. Preventative medicine for me. It also kills shadows. Then, I try to carry on like normal. Sweating it out will not help me, so I don't. I prepare for the worst and wait, confident that I have done all that I know how to do to prevent the beast from kicking my head in when I fall asleep.

No matter what, I know that I am in a better place to deal with it here, among friends! 

ATB!!!! 

[Snowflake]

Hi Spiny

Thank you for this.

The thing that stood out the most from what you said was that I have a countdown till hopefully something will help me cope. This feeling is a roller coaster. Today I woke up great. Good start to the morning. Was perfect. And then I hit a slump. I have no idea what I am depressed about cos I'm not thinking of anything depressing. Not even the Ch. I just have this helpless feeling and along with it comes nausea etc. Then everyone around me wonders why I'm so silent all of a sudden. It's like I don't know how to even explain cos I myself don't know what the heck is happening. I will be prepared for the worst but can honestly say that this feeling of anxiety is consuming and exhausting. I'm also tired of complaining. Eager for a 'feel Good' pill of some sort. Then I remember, we aren't 'allowed' to feel good cos seratonin, for me, brings on the beast. 

Again I agree that atleast I have this space to put down my feelings and thoughts. Even if no one reads them, I get it off my chest cos deep inside what's left of me, you all can relate and that fact alone gives me solitude in some twisted way. So thank you.

D3 and me. I think I didn't take the time to do this regimen correctly and acted out of desperation. I never gave it the chance it deserves I guess. 

I know I will go initiate this process one day. Just don't feel like downing any more pills. I need to be in a better frame of mind to concentrate on what I am doing not only for the D3, but in every aspect of my miserable life right now. 

Caffeine works for me. I don't know about you but it makes me a bit aggressive. I tend to lash out at people that don't deserve it. Heck, my manager thinks I need stress leave right now and want to book me off for a month or so. 

At least I'm not fired. Lol

Luckily my spouse is still at my side after putting up with me for a long time. 

Even though I sometimes feel that we didn't ask for this condition and that everyone should understand or leave us alone. I still appreciate the ones that do still stay.

 

Keep well and of wishes to everyone. 

Will update after the Infusions are done. 

 

[ThatHurtsMyHead]

Snowflake,

Stay strong.  I know those are only words, but you're in closer company here than you might realize.  

PFW,

J

[spiny]

You seem to be suffering from anxiety and depression, in addition to the CH. That is another can of worms of course. Let us know how that part is going post infusion please? They might be both caused by the anticipation of a cycle and vanish when the infusions are over and you feel safe. If they do not, then you might want to seek help from you PCP regarding both of them. 

Hugs!! Please keep us in the loop and get the vitamins for the D3!!! 

[Snowflake]

On 11/13/2020 at 7:32 PM, spiny said:

You seem to be suffering from anxiety and depression, in addition to the CH. That is another can of worms of course. Let us know how that part is going post infusion please? They might be both caused by the anticipation of a cycle and vanish when the infusions are over and you feel safe. If they do not, then you might want to seek help from you PCP regarding both of them. 

Hugs!! Please keep us in the loop and get the vitamins for the D3!!! 

Hi Spiny

I hope you are well my friend.

Please can you message me your email address.

Thanks

 

[spiny]

You can PM me directly from the board. Just click on my handle and it will open my profile and include a 'message' bar. 

I am doing well, thanks for asking!! Check your message box.  

[Snowflake]

On 11/13/2020 at 1:56 PM, Snowflake said:

Hi Spiny

Thank you for this.

The thing that stood out the most from what you said was that I have a countdown till hopefully something will help me cope. This feeling is a roller coaster. Today I woke up great. Good start to the morning. Was perfect. And then I hit a slump. I have no idea what I am depressed about cos I'm not thinking of anything depressing. Not even the Ch. I just have this helpless feeling and along with it comes nausea etc. Then everyone around me wonders why I'm so silent all of a sudden. It's like I don't know how to even explain cos I myself don't know what the heck is happening. I will be prepared for the worst but can honestly say that this feeling of anxiety is consuming and exhausting. I'm also tired of complaining. Eager for a 'feel Good' pill of some sort. Then I remember, we aren't 'allowed' to feel good cos seratonin, for me, brings on the beast. 

Again I agree that atleast I have this space to put down my feelings and thoughts. Even if no one reads them, I get it off my chest cos deep inside what's left of me, you all can relate and that fact alone gives me solitude in some twisted way. So thank you.

D3 and me. I think I didn't take the time to do this regimen correctly and acted out of desperation. I never gave it the chance it deserves I guess. 

I know I will go initiate this process one day. Just don't feel like downing any more pills. I need to be in a better frame of mind to concentrate on what I am doing not only for the D3, but in every aspect of my miserable life right now. 

Caffeine works for me. I don't know about you but it makes me a bit aggressive. I tend to lash out at people that don't deserve it. Heck, my manager thinks I need stress leave right now and want to book me off for a month or so. 

At least I'm not fired. Lol

Luckily my spouse is still at my side after putting up with me for a long time. 

Even though I sometimes feel that we didn't ask for this condition and that everyone should understand or leave us alone. I still appreciate the ones that do still stay.

 

Keep well and of wishes to everyone. 

Will update after the Infusions are done. 

 

Good day 

Update:

I had my first Ketamine Infusion done this morning at 8am. It was a 40min infusion. 

I really cannot describe it although I will try.

It eased in via an IV and I slowly found myself inside my mind somehow. It was like nothing mattered. As if all you needed was imagination even if you couldn't see. I found myself creating whatever I wanted in my endless mind. It felt so good. Everything became so clear. Ultimate serenity. Calm. I never knew that my mind was so capable of anything I desired. 

Negative part:

Even though I suspected my cycle of starting last week with a few attacks, I didn't get any attacks since Tuesday. However, as soon as they stopped the drip of ketamine, I instantly had an attack, however, I asked the Dr to be prepared with O2 incase of this happening. Which he was. Aborted the attack in 10mins. But both him and I found that strange that it triggered the attack the moment the drip was stopped. 

So from my experience previously with antidepressants or and kind of seratonin inhibitors, I found that those brought on a cycle. 

Although Ketamine is part anaesthesia, I did warn him about increasing seratonin and the adverse affects.. still I took the leap. 

So in essence, my personal experience with Ketamine was pleasurable until the CH showed up. Which means that I will not pursue further treatment of ketamine. 

Unfortunately, this just gives me another reason to hate CHs as I feel this treatment is beneficial to everyone one earth. (In accordance to their personality and perseption of course.)

A small percentage may feel a sense of no control of their inner being and that could lead to paranoia. Yet I am like that and this didn't happen to me. So it could be that he adjusted the dosage to suite my weight. I received 40mg as I am 63kgs. 

This is my personal experience and as promised, I have updated and hope it may help someone who is wondering what to expect. Like I said though, everyone is different and may or may not have the experience I had. 

So this is another treatment I crossed off my list. I obviously didn't do this to stop CH. I did it to cope with anticipation of CH cycles and for depression, anxiety and to deal with my suicidal thoughts and past attempts. 

Thanks for reading and pain free wishes.

Back to the drawing board and going the D3 which Spiny is helping me with and I appreciate it.

 

 

[Pebblesthecorgi]

Thanks for the update.  In the throws of a difficult cycle I tried Ketamine nasal spray.  I have had it administered as part of a general anesthetic in the past and had a favorable impression.  Not so with nasal.  I used it at first onset of attack with a total dose of 60 mg.  Hated it and it did not help.  The dissociation between my situational awareness and the pain was unsettling.  I think its called a K-hole when it happens.  I had high hopes of mitigating the attacks but not for me either.  I know others have had a positive experience but not me. 

[Snowflake]

2 hours ago, Pebblesthecorgi said:

Thanks for the update.  In the throws of a difficult cycle I tried Ketamine nasal spray.  I have had it administered as part of a general anesthetic in the past and had a favorable impression.  Not so with nasal.  I used it at first onset of attack with a total dose of 60 mg.  Hated it and it did not help.  The dissociation between my situational awareness and the pain was unsettling.  I think its called a K-hole when it happens.  I had high hopes of mitigating the attacks but not for me either.  I know others have had a positive experience but not me. 

Thanks for this. The Dr did mention something about "K-hole" now that you mention it.

[jon019]

...hi Snowflake....

....many meds have completely different effects the first time (few times/weeks?) compared to what is achieved ongoing. or, once efficacy achieved, there may still be the  "slap backs" we are all familiar with. i would caution not to make a final decision on ketamine based on one experience...especially one where you were prepared and able to abort so quickly (in my mind, what's one more hit aborted out of thousands)...

...you know your body best so these are just thoughts....but i would consider myself fortunate to have the option of trying ketamine in what sounds like an ideal setting...it was never an option for me and many...

best

jonathan

[Snowflake]

10 hours ago, jon019 said:

...hi Snowflake....

....many meds have completely different effects the first time (few times/weeks?) compared to what is achieved ongoing. or, once efficacy achieved, there may still be the  "slap backs" we are all familiar with. i would caution not to make a final decision on ketamine based on one experience...especially one where you were prepared and able to abort so quickly (in my mind, what's one more hit aborted out of thousands)...

...you know your body best so these are just thoughts....but i would consider myself fortunate to have the option of trying ketamine in what sounds like an ideal setting...it was never an option for me and many...

best

jonathan

Hi Jonathan

Thank you for your reply. 

I agree with you take on this situation. Familiar with the ever so popular slapbacks. Just found it strange that if it was a slap back, it occurred immediately as soon as the drip was turned off. Instantly is a more better word I guess. Given my experience with slapbacks when using MMS , It took almost 20 mins and more to occur. 

In addition to this, I was anxious before the treatment and since a had a one hour drive to the clinic in pissing rain, my car broke down just as I got onto the interchange. Luckily I did have a return driver with me, so we somehow managed to turn back. And use my old 1989 Ford V6 which was sitting in the garage. Lol. Surprisingly it got us there and back as I never used it so far before and given the weather, I was even more anxious. 

Temperamental wise, I found that I took ten or more steps backwards that evening after infusion. Even though I didn't get any attacks since. I know Ketamine works over time and is not proven to stop depression completely. I guess in essence it can aid in managing it at a cost and once you stop, you go back to square one. Especially for a ch patient. 

The money was a stretch to have this done but I'm am glad I had the opportunity of at least trying it. I would recommend anyone who can, to try atleast one session. You have no idea how beautiful your mind is. 

It's 7.47am here in SA now. Just woke up. Realised I had a full night with occasional breaks in sleep but not for CHS. Just intermittent sleep breaks. I guess it's an habit now. 

However, no side effects or anything out of the ordinary with me after this one session.

I hear what you saying. I appreciate your reply. Go well and allthe best.

❄️

[Dr. Julie]

On 9/19/2020 at 9:47 PM, GBeth said:

After researching the affects on psilocybin, I have a hint of hope that I could possibly get over being chronically suicidal. Does anyone know where to get this treatment? I'm desperate. I live in wilmette  near Chicago, can drive

You should be able to access Ketamine treatment, has your doctor tried this? Have you discussed it with him? It's approved treatment for exactly what you describe and highly effective for 50%+ patients. It's a low dose supervised IV drip that gives relief lasting weeks and sometimes months. This is the treatment they took out of clinical trials to give it special approval because it was so effective it was unethical to have a placebo group that wouldn't be able to access it. 

 

https://www.nimh.nih.gov/about/director/messages/2019/new-hope-for-treatment-resistant-depression-guessing-right-on-ketamine.shtml