Frustrated...Tired...Venting

[koctail]

Hi there, i am currently in a bad cycle. Lil background...i am episodic for last 25 years.

I had a nice 2 year break but it has come back with a vengeance this summer. It started mid July...which is a really weird time for me to be in cycle. I have been having nocturnal headaches nightly except for a 2 week period where I took prednisone while on vacation.

I go to bed at around 10, get hit usually around midnite, then 2 then again around 5. I hit the Oxygen each time. Lately it has taken longer on the Oxygen to get relief. My only med other than Oxygen is Verapamil. I upped my dose from 480 to 600 and switched from extended release to immediate release recently thinking that might help but there has been no change. I have taken RC seeds but had no relief from them. I also do the D-3 regimen as well with loading doses, etc.

I have not tried magic fungi as I don't have access. I desperately want to but growing is not really an option as I have teenagers. (why does our best remedy have to be highly illegal???)

As far as meds I guess I could try lithium...i have always avoided it but that is an alternative.

During the day I am fine, minimal shadows, and each night I get hit. Only attack I have during the day is after I run.

Anyone have any advice on treatments I might be missing???

Thanks,

--m--

[MoxieGirl]

Hi

Big hugs.

It sucks majorly that this wonder medicine is illegal. Have you thought about RC Seeds? They are legal to buy in most places of the world (if not everywhere), easy to store (cool, dark place) and effective.

I started with seeds for most of my first year.

More hugs,

MG

[koctail]

Thanks MoxieGirl...i have tried RC seeds, they seem to do a little something for the first nite, but no lasting redmedy.

...and I should not complain that much as I know those that are chronic have a much tougher time than I do.

[birdman]

I feel for you as I too am mostly now only experiencing nocturnal hits. Frustrated is a nice way to put it

[spiny]

Melatonin helps some of us with nocturnal hits. Some go up to 20mg, others 30mg. I have taken 30mg spaced over the night with success.

The biggest help for those nighttime hits for me is to NOT lie down. I partially recline in the recliner. That helps a lot. Prone, I get my first hit in less than 30 minutes. Usually about 15. In the recliner that does not happen. Do I sleep as well as normal? No. But I don't hurt all night either! And I do get to sleep from 6 to 8am and that helps.

Also, I use caffeine before and with my O2. That helps a lot! Coffee, energy drink, or V8 Fusion Energy. Since I can't drink the energy drinks, I rely on coffee and now the V8.

All the best,

spiny

[birdman]

Always thought about the recline versus laying down thing. No recliner in the house but maybe tonight I will give the couch a try with my feet up. Can't hurt. Vent away vent away

[spiny]

birdman,

Several members sleep in a recliner in cycle or all the time if required. One piles pillows on her desk and puts her head on the pile to sleep!!  I discovered it by accident about two years ago. Once mentioned on the board, several folks piped up that they did the same. It helps a lot when the hit is a 6 when you wake, not an 8!!! For whatever reason, propping up your head can help with those night time bruisers. Most of mine come from 8pm to 6am - four per night running just over two hours each.

koctail: Short acting is supposed to be better than the extended relief Verap. When I was on it, I would take one at bedtime and another after the first hit. I would add the energy drink or coffee to the O2 routine!! ASAP. It does make a difference.

[MoxieGirl]

Spiny - That's really interesting, about the not lying prone when sleeping. First I've heard of it.

Kocktail - I don't mean to harp on that RC Seeds are the answer, and certainly not the answer for everyone. Just as the D3 regimen doesn't work for everyone, busting doesn't work for everyone.

However... If you only tried them once, you're not going to experience long lasting relief. 

There are also slapbacks to consider, which can make one think they didn't work. Were the attacks you got that first week after taking the seeds different? Were they sharper, shorter or milder? Did they come at a different time of day or night? Did you not experience a post-traumatic-stress attack after the cluster attack? Was your body temperature more regulated, and less all over the place? All of this can indicate the seeds were working, to one extent or another.

If there was absolutely no change in the attacks, then that might indicate they don't work for you. Or you had old dried up seeds void of LSA, or you didn't soak them long enough to extract the LSA, etc. I don't mean to bring into question your thoroughness in preparation. All I'm trying to say is that the vast majority of people who tried RC Seeds, Shrooms or LSD see an improvement.

But this doesn't come from one bust. It does take persistence. I also want to stress, I don't mean to be pushing busting down your throat. There are a lot of things that can help - as already mentioned by others.

MG

[Fabalicious]

The recliner thing works for me as well.  I also have a hospital wedge that I sleep on during episodes (which is always, sigh). I never thought about it before, but it does help.

[birdman]

Good to know as nighttime seems to be my biggest issue lately. Heck, if you said sleeping velcroed to a wall I would try it. Hey, there's an idea. Lol

[mff181]

Hey you're allowed to complain chronic or episodic this illness sucks a big one! As for your teens I wouldn't think you'd have a proble should they know the severity of your situation. I myself am quite young and if I ad to I'd grow them for my mother without any intention of utilizing it recreationally myself I don't think your children would be capable of being so selfish whilst watching what you endure even on an episodic level.

I myself just became chronic and am about to try busting with RC seend and then move on to psilocybin if necessary. If your kids know the seeds can have a psychedelic effect and haven't touched those I'd wager they wont mess with your shrooms either.

I hope my input makes you feel a bit better hugs and PF wishes for you. Hoping you're out of cycle and up and about soon as possible!

[Fabalicious]

I tend to agree with MFF...I spent 45 years hiding my symptoms and being all secretive and shady about this condition, part was embarrassment (i guess from being so out of control during attacks), and part was I didnt want to be a burden on my friends or family.  But Since i have gone chronic, and with the education and support of the incredible people on this site I decided that I was going to come clean and share everything I know about this beast and what it does to person, with anyone and everyone who will listen.  I was actually completely amazed at the support I got from friends and family.  Even my devout Mormon mother spent a few hours in the early morning scouring the pastures around her house for some busting supplies, and a neighbor of my sister, who is really just an aquaintance, showed up at my sisters house with a small bag of MM he had gleaned from his own pasture.  This man even looked up how to dry them properly for storage so they wouldnt "go bad" until he could get them to me.  How frickin amazing is that?  Made me feel all warm and fuzzy :.  So our support IS out there, and most of our families are more than willing to help.  My husband has recently become a staunch supporter since he walked in on me during a K9.  Give folks a chance, even your kids, you never know till you try.  HUGS and PFW to all of us!

[koctail]

Thanks everyone for all the support and advice.

My kids have seen me grinding my rc seeds and i tell them it's my special medicine and they just tend to ignore it. maybe  you are right that i am being overly worried about them finding me growing shrooms. the shroom grow will be a lot harder to hide than the rc seeds though.

i don't hide my condition from friends and family. i have learned to take ownership of the condition and to take control of my medical treatment when in cycle. i have a decent neuro who is quick to rx me 02 when i call and whatever meds i am in need of.

last night i had a pf night!!!!!!!!!!!

i took 10mg of melatonin. maybe that was it or i am tending towards the end of this cycle. i am smart enough to know though that one pf night doesn't mean much of anything as far as my cycle ending. thanks for the advice on the melatonin. i have used it before but never gone higher than 10mg. why do us clusterheads seem to require megadoses of whatever of it is...vit d3, melatonin, etc. to treat us???

hey there mff181 i feel for you being young and just being diagnosed. its a very scary time at the beginning, but there are so many options now for treatment that will hopefully help you minimize the pain or in best case scenario of course eliminate it.