Episodic to Chronic - advice

[AnitaJ]

HI all--

Any advice for hope when it seems hopeless? My husband thinks he's going from episodic to chronic and he's really low.

Additionally, does anyone have experience with episodic-to-chronic? How do you handle it?

Thanks.

[spiny]

Not sure if he knows the definition of chronic. Some authorities say only two weeks PF for a year and other say four weeks. Many of us go thru that fear when we have a cycle that is not the norm or lasts longer than usual.

I have read that for some people they actually find it easier! They say it beats the wondering if they will start a cycle this week or not.

Sorry, that is the best I have to offer. What is he doing for his CH now? Has he found no way to get it under control at all?

[jon019]

My greatest fear over  23 yrs of episodic was that it would become chronic. I was obsessed with the thought. Used to dismiss comments on ch.com that chronics preferred it to episodic.... thought they were nuts. Then it happened.... and the reality was FAR less than the fear of the unknown had led me to believe.

Hits were lighter, aborts worked better, triggers were reduced or went away, depression lessened. It still aint no damn fun...but if ya got the right attitude, a plan and the right tools..... it's controllable.

Best

Jon

[Archimedes]

I like this Jon, thanks very much !

[Bejeeber]

Interesting perspective Jon, thanks.

Agreed with Spiny on how common it is for episodics to fear they're going chronic, often when we're really not.

Also, cycles can elongate for some of us episodics as the years with CH go by. Maybe it can ease the mind a little to know that this isn't so unusual, and doesn't necessarily indicate we're on the verge of going chronic.

[AnitaJ]

Thanks, all, for your responses. Jon, love your attitude.

Spiny & Bejeeber, your comments made me think that perhaps this is just a longer-than-normal cycle. They're usually 4-6 months and this one is going on a year. So maybe it's just that they're getting longer, not that he's going episodic? He's getting headaches more frequently over the past few weeks, and this cycle started last August. He had almost two months PF until last week, and now we are back to square one.

It seems very hopeless and I'm doing my best to keep his spirits up and keep everything together. We're even talking about moving someplace with less barometric pressure shifts...anything to help, basically. He has preventative meds, abortive meds, and a great neurologist who's willing to work with him and try new things, but it seems like nothing works lately. He's convinced that he's going to spend the rest of his life with a headache every day. I wish I had more to offer him in terms of reassurance.

Thanks for your insight, everyone. It's very helpful.

[CHfather]

Anita, will you say what meds he's taking, and at what levels?  He has oxygen?  Is he doing the vitamin D3 regimen, which you can read about here: https://clusterbusters.org/forums/topic/1308-d3-regimen/

The D3 regimen has been very, very helpful for a lot of people.

And is he willing to try busting (ending cycles and preventing new ones using psychedelic substances, potentially at levels that cause no psychedelic effects at all)?  Many people have come to this site feeling that they were out of options, and busting has given them their lives back.  You can read about busting in the numbered files in the ClusterBuster Files section.

 

[Bejeeber]

Hi Anita,

CHf just dished out some great, critical Info IMO.

[AnitaJ]

CHFather, thank you--I always appreciate reading your responses on these boards.

I'm sending him the D3 regimen info now--he's probably not yet able to read it through, since he's in a bad cluster, but I'll scan it and see if I can provide him with the highlights.

He's open to busting, and if I can get him to read the files I'd consider that a huge win. 

I don't know the exact levels of his meds, but he's on Verapamil with the Sumatriptan injections (which we've learned to split, thanks to this site, and that's been very helpful), and currently on Prednisone to try and taper this particular cluster. He may be on other meds, I'm not sure--he works closely with his doctor to monitor them as we're both aware that taking a large amount of pharmaceuticals can be harmful in the long run. It is not the way we want to go, but right now we are truly trying as much as we can.

Despite my continued pushing to use O2, he is convinced that it does not work for him. We have two tanks and a nonrebreather mask, and we have tried before, but he will no longer use it. It's extraordinarily frustrating to me, as I think he could learn a lot about the proper use and technique of O2 to potentially get relief, but he won't try it. I wish I could have another CH meet up with him to discuss the benefits. Understandably, he doesn't want to get his hopes up trying something that may not work; but it's very difficult for me to sit here while he stubbornly refuses to try it again.

However...it's his pain, and I'm here for support--not criticism. He is doing his best to live through this agony, and I admire him and love him. My heart breaks to watch him go through this, but whatever I can do to help him, I'll do. I'll gather as much information as I can but in the end, all I can do is love him and lift him up however I can.

I appreciate this site and your support. It's really helping at this particular low time.

 

[spiny]

 If possible, go to the Convention in Chicago!! They will stress O2 and teach him how to use it among many other things!!! It is in September for a weekend. You will learn a lot too. Many supporters attend with their CHer.

Info is on one of the other boards on the main page. Also on the opening home page where you start when you sign in. It would be great for both of you.

[CHfather]

At least the doctor he likes isn't crazy: the prescriptions are sensible.  During a cycle, many people need as much as 960mg of verapamil, and I think -- spiny, please correct me if I'm wrong -- that it's generally been observed that the short-acting verapamil is more effective than the extended release. Or it's the other way around!  spiny or someone else will clarify.

We get that he's doing what he can, and it is important to know that it's widely believed that extensive use of Imitrex will make subsequent hits worse and more frequent, and make cycles longer.  Oxygen is the way to beat that -- abort with O2 and you need a lot less trex.  But we also get the reluctance to get hopes up and then be disappointed.  That's one of the cruelest things that CH does to many, many people. 

As spiny says, attending the conference could be a great thing for him (and you).

Here's a final refrain that you might have read here.  If O2, properly tried, doesn't work, then it's possible that he doesn't have CH.  Really, "properly tried" is nothing fancy. If he had tanks, a regulator that goes up to 15lpm (or maybe even 12 lpm), and a non-rebreather mask, and there was nothing functionally wrong with the system, in my opinion he should have felt some relief from O2.  So you do want, I think, to consider the possibility that he has a CH "lookalike," most likely some form of hemicrania.  We've had a few people here who were diagnosed with CH who actually had hemicrania continua (HC).  The good thing about that is that it's treatable with a medication called indomethacin.  Maybe you might look into HC and it might be something to be suggested to his doctor.

[jon019]

Yo CHf...best to you brother...

 

Re verapamil....I was ona the upper limit guys...sometimes over 1000 mg/dy (480 mg/dy seems to be the sweet spot for many) . Extended release...for ME...was worthless no matter the dose. Got it once by accident and the panic that ensued (IT DOESN'T WORK ANY MORE!!!!!) is still SEARED in my brain. At least experiment. I had some success TIMING the split doses to just prior to anticipated hit times!

Re O2....mixed feelings. At one point I was poor and had crummy insurance. Had to buy O2 out of pocket...$10 per e tank...which was quite reasonable...but still. This gonna cause eyerolls and guffaws... but I used 4-5 LPM and successfully (aborted about 60-70%) because I had to conserve. Wrong mask...wrong technique... Later, found success with better technique, 15 LPM and the right mask...Other times 20-25 didna work. see O2 thread at ch.com for near everything ya need to know...AND get the right mask...available from the store there. My gut feel is that O2 is not 100% effective no matter what...BUT proper setup, mask, and technique are CRITICAL before giving up...........

Never liked Imitrex....made me feel "ooky"...found my favorite rescue med to be Zomig 5 mg nasal spray (99% effective...no rebounds). Damned expensive and damn insurance companies always made obtaining a trial....

Best

Jon

 

 

[spiny]

CHF

Sorry for the late reply. Short Acting NOT ER (extended release).

As Jon said, ER can mess you up and you think it no longer works, or never worked!!! Short acting, I too tailored to my normal hit times. One during the day and two spaced out over the night. Trust me, if you are in cycle, you will NOT forget that second pill after you kill a hit. I had to beat this into my docs head BTW.

Sure have spent a lot of time educating my Neurologist. Too bad it doesn't pay in dollars. At this point, I mostly go for the annual for one script for the neck pain and to educate the sweet man. He is a really good man, just not enough education is given to these guys in school.

Imitrex: I have taken exactly two pills my whole life. Not afraid of shots, just not going thru the problems that Trex brings. Heart  disease? No thanks. I would rather beat my head on the floor than touch it. Of course that is just my opinion. And we know that thing about opinions, right?

[MoxieGirl]

HI Anita, and gang.

I've always been chronic, and to be honest, being episodic used to scare me. Sort of along the lines of what Jon said above. At least when I was getting hit all the time, my life was prepared for it. I always said, still do actually, life is what happens between headaches. Although these days, it's mostly chronic migraines and chronic daily headaches. Cluster Attacks, not so much any more. 

In 2011 I was getting up to 5 vicious attacks a day, every 2-3 days for an entire year. That was about my worst year with Clusters since they started in Jan 2007 (add on top of that my migraines and daily headaches, of course). I had gone through, and maxed out every drug the doctors could give me over the years, and they just got worse and worse and worse. If I had 3 days attack free, I was amazed. And when they hit, it was HELL on Steroids! 

Nov 2011 I had my calendar in front of me, and was selecting a date on which to leave planet Earth. I had decided to give myself one more year to find a solution, and then good bye. I had been told about this board in 2010, and read through some of the pages. But to be honest, LSD scared me. I've never done anything harder than pot, and that was when I was very young. As a result, I had always held this option as a last resort. That day when I was picking a date to die, I knew I had reached my last resort.

So, I joined the forum, and was instantly greeted by the warmest and nicest people on the planet. You've met them already. I began coming off of Topomax (Topiramate) as quickly as possible, to quickly if I'm honest, and I spent all my free time reading these pages. By the time I was clear of the doctor prescribed "waste of time", I had a small amount of shrooms and some RC Seeds.

After my very first dose, I knew I was onto a solution. My next attack after that dose was COMPLETELY different than anything I had ever experienced before. I knew the routine, I knew the schedule. But this attack after busting, it didn't follow the schedule, or the routine.

My routine was: Sudden attack, like being hit in the face with a baseball bat. 30-60 minutes of extreme pain, usually sitting on my bed rocking back and forth with snot dripping down my face, followed by 20-30 minutes of uncontrollable tears and shaking, as if someone where rattling my bones. But, after my first bust, there was NO post traumatic attack. No crying, no shaking. I had a short, 20 minute attack or so, and then got up and dusted it off and got on with things like it was no big deal. The attack was sharper, and 'clearer' than any other. It was like crisp, cold, crystal clear water instead of the heavy, oppressive attacks I normally got. 

It took me the better part of a year of busting on and off to make a huge difference, but a difference it made. Year 2, I only busted occasionally, a few weeks at a time 3-4 times a year. Two years ago I started micro-dosing, which is amazing! It involves taking a small dose (0.20 grams or less) every day with no tripping affect. But, I don't even do that very often now. In fact, all my busting material is going to my best friend who has ALS, she needs it more than me.

Do I still get attacks? Yes, I had one yesterday in fact. It lasted about 30 seconds. Took my breath away and brought a few tears to my eyes, but that was it. I get 1 - 2 attacks a month now, and consider anything over 15 minutes a shockingly long attack! In fact, 5 minutes is unusual. 

I'm not as scared of being episodic now as I once was, simply because my attacks are not what they once were. I'd be concerned though that if they stopped for a year or two, they might come back with a vengeance. But I have a solution now. I know how to stop them, and I have no plans of leaving this planet anytime soon. 

MG

[CHfather]

You're the best, Moxie.  Glad to read all this.  Very interesting that you're microdosing.

[Pixie-elf]

Possibly the reason he's getting hit more right now is because on the 20th, we have the Solstice coming up. Most of us get hit WAY more during this time period.

Things tend to calm WAY down afterwards. My neurologist said it has something to do with hormones... I know my hits get a crap ton WORSE every time the solstice or equinoxes swing around, and it's not just because my botox wears off!

Also, I'm not sure if I'm reading THIS right but... if I am, I think what Verapamil does is it stops you from making excess CGRP, or reacting to it. https://www.ncbi.nlm.nih.gov/pubmed/8523457 Which may be part of what causes our headaches.

Which means, it kind of keeps you from getting worse? But it may not make you better.... So Verap may hold your headaches in place and stop them from progressing, but it's not going to fix the problem. So if you're episodic, you take it until the attacks go poof, and you're over your cycle.

If you're chronic, you take it until your body builds up a tolerance and says 'Fuck this'. At least I'm assuming that's what happens... But I could be COMPLETELY wrong.... I've been known to be.  (Ignore all of this, I read it wrooooong I think.)

Back to your hubby....

I second the suggestion of RC seeds, they help SO MUCH. I didn't get relief from oxygen unless I got on it RIGHT away...and currently I don't have it. But RC seeds helped a crap ton. I'm a chronic. I started out chronic. 

Good luck! <3 Everyone else gave some super advice here!

[jon019]

43 minutes ago, Pixie-elf said:

Also, I'm not sure if I'm reading THIS right but... if I am, I think what Verapamil does is it stops you from making excess CGRP, or reacting to it. https://www.ncbi.nlm.nih.gov/pubmed/8523457 Which may be part of what causes our headaches.

Which means, it kind of keeps you from getting worse? But it may not make you better.... So Verap may hold your headaches in place and stop them from progressing, but it's not going to fix the problem. So if you're episodic, you take it until the attacks go poof, and you're over your cycle.
 

Hiya Pixie,

Thank you....never really thought it out. Haven't read the article but that describes EXACTLY my experience with verap. Always seemed like it was just holding something back, sometimes tenuously....like by a fingernail. Explains the need for constant (sometimes constantly increasing) serum level or successfully timing doses or need for dosage increase either over time or depending on cycle timing....

Best

Jon

[Pixie-elf]

23 hours ago, jon019 said:

Hiya Pixie,

Thank you....never really thought it out. Haven't read the article but that describes EXACTLY my experience with verap. Always seemed like it was just holding something back, sometimes tenuously....like by a fingernail. Explains the need for constant (sometimes constantly increasing) serum level or successfully timing doses or need for dosage increase either over time or depending on cycle timing....

Best

Jon

Actually, I re-read it with fresh eyes today.

I think I had it completely wrong. It looks like verap doesn't inhibit the contractile response in CGRP. 

But it also might not have anything to do with us, because contractile response is where things twitch?

Ah well.

[jon019]

On ‎6‎/‎10‎/‎2017 at 0:07 PM, Pixie-elf said:

Ah well...oh well. Still have not read the link article.....but stick by my post. You describe what I have experienced. The reason "why" may be unknown....but DEFINITELY food for thought....

Best

Jon

On ‎6‎/‎10‎/‎2017 at 0:07 PM, Pixie-elf said:

 

 

Also, I'm not sure if I'm reading THIS right but... if I am, I think what Verapamil does is it stops you from making excess CGRP, or reacting to it. https://www.ncbi.nlm.nih.gov/pubmed/8523457 Which may be part of what causes our headaches.

Which means, it kind of keeps you from getting worse? But it may not make you better.... So Verap may hold your headaches in place and stop them from progressing, but it's not going to fix the problem. So if you're episodic, you take it until the attacks go poof, and you're over your cycle.
 

Hiya Pixie,

Thank you....never really thought it out. Haven't read the article but that describes EXACTLY my experience with verap. Always seemed like it was just holding something back, sometimes tenuously....like by a fingernail. Explains the need for constant serum level or successfully timing doses or need for dosage increase either over time or depending on cycle timing....

Best

Jon

[AnitaJ]

Wow, thanks everyone! This is all great stuff.

I did have questions about suicide specifically...while I don't think my husband is suicidal, I can't imagine that it hasn't crossed his mind. How do you cope with those thoughts?

MoxieGirl, I'm so very glad you're OK and you're here. And in case anyone else is wondering, you guys are an inspiration! Seriously. Your strength and your support is amazing.

I think it's time to give busting a try. I guess the place to start is...where would we get them!

[CHfather]

14 minutes ago, AnitaJ said:

I think it's time to give busting a try. I guess the place to start is...where would we get them!

You get RC seeds legally, and possess them legally, by ordering them from a vendor such as www.tranceplants.net or www.iamshaman.com

Has he made any progress toward re-trying O2 or starting the D3 regimen?  And have you considered the Chicago conference?  I feel like that might be the most valuable thing he could do.

[Pixie-elf]

22 hours ago, AnitaJ said:

Wow, thanks everyone! This is all great stuff.

I did have questions about suicide specifically...while I don't think my husband is suicidal, I can't imagine that it hasn't crossed his mind. How do you cope with those thoughts?

MoxieGirl, I'm so very glad you're OK and you're here. And in case anyone else is wondering, you guys are an inspiration! Seriously. Your strength and your support is amazing.

I think it's time to give busting a try. I guess the place to start is...where would we get them!

Well, for starters... I cope with the thoughts by knowing that I have a good support system, and a lot of people who love and would miss me if I were gone... And that usually prevents me from doing anything drastic. Knowing that, and that I am needed helps.

Then there's the fact that the attack -will- end eventually... I might have another one later, but the one I'm in, will stop. Knowing that also helps.

But mostly knowing I am loved, wanted, and cared for is the best thing to help keep me from doing anything drastic. It helps anchor me. Knowing I have unfinished work on this Earth. I'm not sure if that's what you're looking for... But the fact I am useful keeps me here. So your love and support for your husband matters, so much, more than you even know.

The thoughts do come, sometimes just as a "I'd do anything to stop this.". It just kind of happens. But knowing that we have our supporters is what keeps us going.

The fact that you're trying to help him, will also help him cope, too. <3
 

[Dallas Denny]

23 hours ago, AnitaJ said:

 

I think it's time to give busting a try. I guess the place to start is...where would we get them!

Hi Anita!

I see Chf has you lined out on LSA busts so I'll address vitamin M.

Although a few folks are able to source and purchase  shrooms, the vast majority of us have had to take up mycology and learn how to grow our own.  It's a fairly easy learning curve and not too terribly expensive to get set up but it does take a minimum of between 35 and 42 days to realise the "fruit of your labor".  

Just watch the youtube video series entitled " Let's grow mushrooms "......they'll demo everything you need to know......you out can source all needed supplies from Wally world for less than $50 with the exception of the brown rice flour, coarse grade vermiculite and a spore syringe.  Whole foods or any health food store for the brf at approximately  $5 for a 2# bag.....coarse grade vermiculite is only available in large 3 cu ft bags at commercial landscape supply stores in my area and costs around $35......Spore syringes are available from Spore Works and run around $20.....so between  $100 & $125 for a batch of "pain free livin"!!

Dallas Denny 

[AnitaJ]

Thanks for the info, everyone! I'm looking into RC seeds as we speak.

CHFather, I'd love to look into the conference but that brings up more questions I have. Can't flying trigger an attack? (The pressure change, etc.) And has anyone ever flown with their sumatriptan injections? We have a trip planned next month and I'm scared that TSA will just take away his shots for no good reason.

[CHfather]

Unfortunately, yes, flying can often trigger an attack.  I wouldn't think that a sumatriptan injector would be refused.  It's clearly medical, and it's below the limit for liquids.  Maybe others have had a different experience.  Once they get past security, a lot of folks pick up a 5-Hour Energy or some other energy beverage to bring with them.

Even knowing that it's possible that they will suffer an attack on the way to the conference or home from it, a lot of people come back to the conference year after year.  That's how valuable the information is -- and, just as importantly if not more importantly, how valuable the experience is.

(Denny's suggestion that you consider growing your own medicine is important to consider.  There a cases where one busting agent might not work, but another one does.  Having an alternative is a good thing.)