Venting/Feeling Sorry for Myself

[siouz76]

The beast is back again.  I have fought this battle on and off for 14 years and when the pain hit its highest point tonight I honestly had the thought that I’ve never felt anything this painful in my life.  It’s funny how I forget how truly awful the pain is when I’m out of cycle.  This past reprieve was 18 months and I am grateful for the pain free time.  But I’m also angry and scared and sad right now.  In the past I had dealt with relatively short cycles, but the last one drug on for 6 full months.  It was mentally and physically excruciating.  I was so traumatized after that cycle ended that I kept my 02 for a full year before I returned the tanks and stopped paying the monthly fee.  During that cycle I tried every drug my Neuro could think of, everything that had worked in the past and a dozen other drugs with no relief.  I tried mushys and countless doses of seeds, with and without alcohol with various lengths of soaking time.  I tried every vitamin regimen I read about on here.  Several times I thought it was going away.  I’d have several pain free days in a row and then bam, a night of cluster headaches.  One after another all night long sucking the life out of me.  O2 was my only savior.  At least they didn’t last long when I could start the O2 immediately.

I am a single mom with a stressful full time job.  I’m an attorney and compliance officer for a hospital.  Tonight I went to our ED after an hour and a half of agony and asked for O2.  I was told that they didn’t have any rooms available and couldn’t even hook me up to O2 in the hallway.  I know for a fact that our small city was not experiencing a major crisis tonight so that couldn’t possibly be true.  I was told that I was low on the triage list so I would have to just wait it out until a doctor could see me.  I didn’t need to see a doctor.  I needed 10L high flow O2 with a non-rebreather mask.  I turned around and walked out.  Eventually the h/a subsided and the anger and frustration set in.

That last 6 month cycle nearly killed me.  I’m sitting here feeling very sorry for myself right now.  I keep thinking I can’t do this again, not like last time.  Maybe I need to see a psychologist.  Maybe if I didn’t go back to work and just meditated and relaxed for a few weeks the cycle would pass normally.  Maybe the internal panic I’m feeling right now is making this worse.  Maybe I need to suck it up again like I did last time and just push through and survive.  I feel like I’m on the edge of a cliff. 

[CHfather]

siouz, I was very sorry to see your name show up here again.  I remember what you went through last time.  My heart goes out to you.  You tried almost everything, so thoroughly.  Even indomethacin, which "shouldn't" have worked, but gave you some relief for a while.

I'm just going to say some things here, hoping there might be something helpful, or a reminder of something that might help. Mostly, just a way of reaching out.

The only "major" thing that's worked for a lot of people here that I don't think you tried last time is licorice root.  Here are the instructions for that.  You could probably pick some up and start it right away, if you don't have any of the contraindicated medical conditions.  https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

Of course, you'll be getting O2 right away.  I'm assuming that will be no problem for you.  If it looks like there will be any kind of significant delay, we could guide you through quickly setting up a system using welding oxygen.

I know the D3 protocol didn't seem to help you last time, but I'm wondering whether you have had your D levels checked recently.  One thing that has been found, I think since the last time you were here, is that sometimes/often a serious D3 loading program, taking very high levels of D3, is needed to get the levels up into the desirable range.  The latest version is here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

I don't remember how energy drinks worked for you last time.  Energy shots actually seem to work better for some people--just as much or more caffeine with less hassle to get it down.

I think most people would urge you to give busting another chance to help you.  I think you'd be starting earlier in your cycle this time than you did last time, and if so, maybe that will lead to better results.  If you decide to do seeds and order them from tranceplants.net, you should get the next-day service, because every other shipping method takes a long time.

Some newer things: A bunch of people in Finland have had good results with Acetium, which is now in clinical trials to assess its effectiveness in relationship to CH.  It's discussed in this thread, and at the bottom of the thread RazorPP gives a link to a place to order it: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1403366830/4

This is not a particularly new idea in itself, but a person who had a miserable time with CH reported the other day getting good results with a nutrition/cleanse program.  That thread is here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1405203752/0#0

Of course, we're all wary of treatments that are brought to us here with big claims, but in both of those cases they came from long-time members with some serious CH history.

I'm just talking here about non-conventional medical things, in part because I feel like you had tried virtually every conventional medicine approach, except for lithium.  I know from close experience (and the research reports) that lithium can work, but I fully understand your reluctance to go there.  There's a reason that it's usually only prescribed to people with chronic CH.  I'm remembering that one or more people here have had some success with a particular kind of nerve-block injection, but I don't remember the specifics.  I think Bejeeber remembers the particular type of injections (at facets, as I'm recalling), so maybe he'll clarify that.  But obviously these are probably only possible long-term approaches, and we're looking for something that will help you now.

Again -- I'm so sorry that you're here, but I'm glad you came here and I'm hopeful that others, wiser than me, will be able to help.

[MoxieGirl]

Big hugs to you siouz,

I've been in similar places, it's not nice on so many levels. Being a single-parent with a full-time job is stress enough for one lifetime.

For me, I find if I have too much or too little stress in life, that seems to trigger attacks. I always play a balancing game of having just the right amount of stress.

Not much help I know. I'm thinking about you and sending what positive energies I can. Hang in there. xx

MG

[diamondmaker]

Sorry to see they are back,

Back away from that cliff... maybe take a day off to prepare, get your O2, try to get some MM or seeds in you before you start pumping in the pharma... that can make the difference where busting is concerned. As far as stress is concerned, I do notice de-stressing in the evening, laying down for sleep, to be a trigger for me. On the other hand, many of us, including myself, have PTSD from pushing ourselves too hard and getting too worked up over things. Yes to meditation!

[razorPP]

siouz, i hate the f in edge, the beast can push you there, stay strong and hold on for change...i'm reluctant to report on Acetium, but i think you need a little hope, it's only been three 1/2 days, from day one, no small hits during the day or the big hit in the evening, no ice pick in the eye, my head feels really good this morning, not something i'm use to, you might try Acetium. peace

[didgens]

razorpp .. watching your Acetium experiment with great interest 

[Bejeeber]

I think you're getting all kinds of good input in the replies so far Siouz, including how busting can be more effective at the beginning of a cycle (and before pharma) than in mid stream, the new interest in acetium, etc.

And thanks for reminding me about the facet nerve block idea, CHf - I'm copying and pasting now from stuff I was blabbing on about in a recent PM conversation after seeing Dan get such dramatic (and with the RF burning of the nerves, pretty long term) relief:

---------------

Dan/Hipshot has reported on this type of nerve block and here's the initial discussion from when regular old occipital nerve blocks weren't working so well for him, but these were providing temporary relief:

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=print;num=134430...

Then this from 2013:

"He burned the facet nerves last month which seems to really do the trick for a longer period."

And now up to date with this most recent statement I've seen from him:

"I get facet nerve blocks with 100% relief. I have gone 5 months PF this time"

------------------------

[Hipshot]

Good one Jeebs.

Some may get tired of me saying it, but Occipital Facet Blocks DO work for me 100%.

Months of relief.

This is NOT a run of the mill occipital nerve block. O

I am sedated, strapped down and the shot is done under fleuroscopy. It is actually in the lower part of the neck.

I highly recommend it. I can't explain it any other way, IT WORKS FOR ME

[CHfather]

IT WORKS FOR ME

Sweeter words were never spoken (or written, I guess).

[siouz76]

Thank-you so much everyone for the information and advice!  I am doing much better today.  Thankfully getting my O2 was easier than ever and it was already delivered to my house.  I didn't even have to argue about the flow levels or mask type this time.  They said it was actually a "cluster headache protocol" now.  Someone is catching on!  That is great news!

I've decided to forgo any meds for now and see what happens with just using O2 for management.  If I can get some mushys I'll give that another go and hope that trying it earlier in my cycle will be the key.  If not, I'll reevaluate after I see what this cycle is going to do.

I am happy to say I've backed away from the edge of the cliff.  It's still in view but I'm in a better place now.  Having the support of others who get it is an amazing and wonderful thing! And having the O2 takes some of the fear away. 

[MoxieGirl]

Very happy to ready the positive tone in your voice. So glad you are feeling better.

xx MG

[CHfather]

Siouz, I am also very glad that you're feeling better.  I understand why you want to give it a go without the meds. Not so much about postponing busting (except I have the sense that you don't really trust seeds after your last experience and you don't have access to MM (and you're a lawyer)).  But it's not clear to me why you wouldn't give the licorice root and/or D3 a try (or at least get your D level tested, which I assume wouldn't be too hard for you to arrange given your work location).  These things make a difference for a lot of people, and a big difference for some people, and they're safe (done properly), legal, and probably even just generally good for you.

[siouz76]

CHfather- by "no meds" I actually just meant no prescription meds (no prednisone, verapamil, Depakote, Topamax, etc.)  Other than the 2 cycles I experienced during my pregnancy, I don't think I've ever gone w/o a burst and taper with verapamil initially.  Sometimes it actually works and it will end the cycle.  But I really feel that the prescription meds prolonged my last cycle.  Before O2, I relied on Imitrex, but that really increased the number of headaches I would get and those rebound headaches would last for hours without another injection.  I learned to stay far away from that stuff.  It's all trial and error.  What works for one person doesn't always work for another.  What works in one cycle, doesn't touch them in another.  It's exhausting.  I really wanted the seeds to work so I tried so many times last cycle with many adjustments.  They just didn't work.  Maybe they would work this cycle but I still feel that was an exercise in self torture so I can't bring myself to do it again. 

I called the one person I know who could potentially locate some M for me and was able to get just a very small amount.  I haven't weighed it yet but I'm guessing it will only be enough for 1 attempt.  I haven't decided whether or not to try it.

My vitamin D levels were ok when tested in January and I was low in Zinc so I have already been consistently taking D, Zinc & Calcium & Magnesium, but have increased the D substantially this week because I don't think it can hurt anything.  I think I may actually have some licorice root in my cabinet from the last cycle as well so maybe I'll give that a try again too.  I am a little worried about taking anything at this point that could interfere with narcotics because unfortunately I'm scheduled for shoulder surgery on August 14.  I was planning to put it off until after this cycle is over, but I had another bad dislocation on Sunday, which led to sleep disturbance and 2 nights of clusters every other hour.   I'm damned if I do, damned if I don't. 

If I attempt a bust I'll update.  Just not sure it is a good idea if I don't have enough to really try to knock it out.  I remember after a bust attempt last cycle my headaches sort of morphed into some crazy cluster/migraines that didn't respond well to O2 and lasted for a full day.  I do not want to go there again.

Thanks again!

-Susan

[MoxieGirl]

Hi Susan,

From your brief description of your previous bust attempt, it sounds a little like a 'slapback' headache. Often when people bust, they'll get weird cluster headaches within the 72 hours post bust. Sometimes they are sharper, or harder, or come at an odd time. Sometimes they last longer or shorter. But they are 'different', which is about the only word I can think of that describes them.

We typically take slapbacks as a good sign, a sign that the bust is doing something if nothing more than stirring up the beast.

I routinely busted on 1.2 grams of cracker dry mushrooms, which is the lower end of the dose I'd recommend. But 1.2 grams worked. Some say to take enough that you see God (or gods), but I think that is something that takes some working up to, especially, if like me, you have little or not prior experience with shrooms.

MG

[gardengal]

Everyone here knows exactly how you feel. You are not the only one! I just become a hermit during a cycle. I notice the relax and it will get you train of thought. Im always thinking when is the next one going to happen, and feel like I constantly am monitoring how I feel, looking for signs. It is exhausting.

[Fabalicious]

Hey Siouz! I am in the process of cleaning the trex out of my system as well.  I have taken such high doses for such long periods of time that the side effects have kicked into high gear, chest pain, dizziness, shortness of breath.  I agree with you about staying away from that stuff, and thanks to my brothers and sisters in arms for helping me to see the light before I had a heart attack.  ;D