Jeez....Again?

[spiny]

Lovely,

Finished the Pred. Friday. Doing really very well for a few days. Shadows pretty constant, guess that's a Kip3/4. But, actually started back on Benedryl at bedtime for allergies since I am off extra meds.

Last night: Hello my beastie. And you are here why? O2 for 10-15 minutes made it all better. Well, the shadow came in a few minutes later. OK. Take my Vits. and Benedryl and hit the sack.

Half hour later, ready for sleep, head down and 'Hello my beastie' again! > OK OK Back to the O2 and stay longer after it is gone this time. Good to go. Sit up for 1/2 hour so I don't get a shadow and then back to head down, sleep now.

An hour later, eyes pop open and it is "Hello" again!!! Knowing there is no escape - Kip 7/8 cooking inside my temple already. Up and off to the tank (I think we are having an affair). This time, I sit up for an hour, hoping to avoid a repeat. It works! 8-)

As soon as that 'required' 4 hours we need is reached, I am up and about. OK, I guess. Two hours later, I go back for a nap. Had coffee and meds and Vits. Nod off with hubby on the hook for a wake up call in 1 1/2 hours. Nope, up in 30 minutes with another - Kip7/8 when I get up. 'nother cup of strong coffee and my affair with the tank. I am sick of coffee.

Shadows all day. Weather sucks, barometric dropping. Raining for two days now. Supposed to turn cold tomorrow, but my hubby just came in and said it was snowing!

Well, guess I just wanted to talk to someone who 'got it'.

Anyone else and most of the time I get something about how their migraine is killing them. Sometimes even going into great detail about migraine pain.

To those 99%er's out there? Meet my >03%. >

Yes, I am 'issed. >  With something so uncommon, who is actually going to spend the money on research and marketing? I know, it is that little thing called profit. Everyone in business has to make it or they are going to go broke.

Yes, I am keeping up with the research that is being done. But, I will probably be dead when they bring it to market. Just not enough return on investment.

Thanks for letting me rant. I do not look forward to falling asleep.

spiny

who is feeling particularly prickly today

[Pixie-elf]

Have you tried Melatonin at Bedtime? It's what a lot of us use to help us get through the night hits.

Have you tried the RC seeds, or anything else?

Hope you feel better.

Mystina

[Lieutenant2]

Prednisone will do more damage than the CH ever will. Stay far, far away from that stuff. (I know you didn't ask for opinions on pred, but I'm sharing mine anyway!)

Time to take action. Get yourself some RC seeds, follow the directions on this website, and get your life back. It is that simple. Doctors can not do jack-dookie-squat for you.

[Bejeeber]

I'll echo both Mystina's concern and Lieutenant2's tuff love, and both of their suggestions.

Melatonin - starting at 9 mg, all the way up to 18 or even 21 mg if necessary. This form is reputed to be most effective: n-Acetyl-5-Methoxytryptamine

Have you tried the D3 regimen yet? It is reputed to affect your arterial PH in a manner that makes the O2 more effective. That bears repeating. The D3 regimen can render O2 more effective.

I know that waking up every hour to abort with O2 routine all too well and it SUX!! It BLOZE. Sorry you're in that terrible high cycle mode right now.

Those RC seeds can be overnighted BTW, so you could get some and be dosing with them on Friday night. 8-)

[CHfather]

Like they said, spiny . . . time for some RC.  Grind 'em up, soak 'em in water for an hour or so, drink 'em down.  Very, very unlikely that you'll experience anything psychedelic, but lots of people report an exceptionally  good night's sleep after a dose (which sounds like it would be much appreciated).  Here's one doctor's report on the effectiveness of the active ingredient in RC. He's reporting on a different kind of seed (HBWR), but with the same active ingredient (LSA).  Most people here find that RC is easier to work with than HBWR.  http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

There are others who share your pessimism about BOL, but the market, worldwide, is big enough to make it worthwhile . . . and while the entrepreneurs behind BOL have bravely restricted clinical trials to CH (rather than including migraine), it is likely that it'll help migraine, too, and that creates a potentially huge market indeed.  If there are no stage II clinical trials of BOL within the next year, you can call me a gullible fool.  Also, other treatment methods are showing good promise, too.  I think there's good reason for hope.

But in the meantime, RC (or psilo or LSD) is what there is, so why not go there??

So sorry the D3 regimen isn't helping you. You could PM Batch, who really goes out his way to try to help people adjust it for their needs, and discuss it with him: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=viewprofile;username=072431262D450

[Bejeeber]

...RC......Very, very likely that you'll experience anything psychedelic...

I'm going to go out on a limb and guess that was intended to read "Very, very unlikely that you'll experience anything psychedelic".  ;D

Oops I didn't realize or forgot you've tried D3 already Spiny. Sorry.  :'(

[CHfather]

wait . . . unlikely means not likely?  then yeah, that's what i meant!  learn something every day here.  (now corrected)  eggcellent catch, Bejeeber, eggcellent.

i think spiny said somewhere that she was doing the whole D3 thing, but now i figure i'm unlikely likely to be wrong about that too.  :-[

[spiny]

Good Morning,

Yup, last night sucked again. First four hits, I hugged my O2. Bet I burned thru 1/2 a tank last two days.

After four good hits, I gave up on the O2 and went for coffee. Then a HOT bath to go with the coffee, as I was freezing and the heat pulls my mind to my burning feet and behind in the water.

After 1/2 hour and the addition of lots of hot water the octopus climbed back in my temple. Good thing we have a boiler that provides unlimited hot water. 8-)Then, sit up for an hour and when the pain receeds to just sore and hot, I get to lie down with my neck in that special position that doesn't hurt. I never sleep on my back except during cycle. >

I can stand a lot of the hot poker in the temple, but NOT the eye and NOT the hated eight armed critter that crawls out and takes over my face. That is my real Beastie. That is the 'leave me alone' sign. You can't help, so please, just ignore my gyrations.

Smushed another pack of Charmin too. Sit on the john, hold that sucker tight and rock to the pain. It provides the perfect prop for my head or arm to hold it. When I find a less painful position, I freeze in that spot until the next wave hits. Sometimes I look really funny - frozen in place while walking is pretty funny. I look like a stuck Road Runner with one foot raised for the next step that I won't put down until the next wave of the octopus arm on my face moves and electrifies a different spot. 

:'( YouTube would love a short of that walk : We could label it "The walk of pain." 8-) Cluster headache in motion!"

Well, stop motion would be more like it. Stick figure in action. I have lost 6-7 much needed pounds this last 6-8 weeks and I am really 'issed about that. > Seems like I must eat dinner the size of this house to gain just one pound. Even worse, I AM NOT HUNGRY!

I have been drinking 1 or 2 Protein enriched glasses of milk a day for over a month now. One provides 53% of protein per scoop, so with 2 at least I get my protein.

Yes, I am doing the D3. According to the thread on it , I still need to add about 3000 more units of D3 to make 10,000 mg per day. Will do that today. Also, I will get some Melatonin. If the snow is not too deep to get from here to town anyway. I did not know the dosing for that.

Pred does blow. Yes, I started out with the blister pack, which helped till I got down to three a day. At least I got two nights sleep then. So, we went to a long taper. That is what I just finished. I am afraid of the stuff, but it helped a lot- while I was on it it helped. Needless to say, I am finished with that shit for a while. It did not break this cycle and my body can't take anymore of it.

Painpills suck too. I took one yesterday as well. It killed the shadows for 2-3 hours. It never helps the one in progress, but does give me few PF hours before the next hit. I know, addiction and rebounds are likely to occur, but  one to two pills in 24 hours hasn't caused caused addiction. The rest of the white little pills just sit there for the next really bad day. Too infrequent dosing for that bear to start re-bounding.

Verapamil is at 360 and I can't take a higher dose. My BP is normally 102/78. With the Verap, it is lower. OK during the day, but nights it slows during sleep. If I breath deep ten times and then take a reading, it will be 86/60 or so. Bad when sleeping.

Last night, with the breathing, it was 127/85 (can you say PAIN >) when I was approaching the peak. My pulse was 102 at the time too. I need to keep a log of this, not that the frigging De would read it and act on it. Nice guy, but not knowledgeable enough for 2011. He has lots of female migraineurs (spell?) and a few male CHer's. He doesn't know what to do with a female CHer who is allergic to damn near everything, has low BP, and weights in at 110 now. My iris is changing colors and he did not know that that can be a sign of Horners. At this point, he finds me a pest who knows too much and can't be fixed. Wonder what his face would look like if I said I was thinking about returning to the 60's to do some things I missed doing back then?

This post took an hour to write?  :oYep, sure did. Coffee is killing my stomach, so am off to take some daily meds and say 'Good Morning' to my hubby. He too is sleep deprived and I feel like a real heel for that.

Thanks for the support and funny picking at each other. Just like a good family would do at a get together. 8-) Picking and funnies are good medicine!

When I nap today, I will dream of flowers. 8-) Maybe before long I will have some pretty ones in my minds eye. After all, spring will come, won't it?

spiny

too tired to be funny today

PS: That should have been .03%er, not 03% in my original post. Really makes one feel small in this big world.

[CHfather]

Yes, I am doing the D3. According to the thread on it , I still need to add about 3000 more units of D3 to make 10,000 mg per day. Will do that today.

Spiny, below is the full D3 regimen as summarized by "Batch."  You need to do the whole thing to find out whether it's working for you.

Also, he says this regarding verapamil: >>If you are presently taking verapamil as a cluster headache preventative or for a heart condition, studies have shown that after repetitive dosing with verapamil, the serum half-life can be in a range from 4.5 to 12 hours.  Other studies indicated calcium supplements interfere with calcium channel blockers like verapamil.  Calcium gluconate is also used to treat reactions to oral verapamil.  Accordingly, in order to minimize a possible interaction with calcium that may limit verapamil effectiveness, separate the verapamil and calcium doses by at least 8 hours.  Again, discus this regimen with your PCP, neurologist, or cardiologist to work out an optimum dosing schedule.<<

Strongly suggest that you read the whole summary at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

Also, you don't mention energy drinks (RedBull, Monster, etc.), though maybe you have mentioned them before.  Downing one quickly at the first sign of a CH attack helps many people, and can make the O2 more effective.

Elements of the D3 regimen:

1. Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360

                                 mg/day, DHA 240 mg/day)

2. Vitamin D3 *        - 10,000 IU/day

3. Calcium **           - 500 mg/day (calcium citrate

                                   preferred)

4. Magnesium            - 400 mg/day (magnesium citrate or

                                    magnesium gluconate)

5. Vitamin K ***        - 120 mcg/day (2)

6. Zinc                     - 10 mg/day

Note that many formulations of calcium citrate include magnesium, zinc, and vitamin K.

This regimen can be taken any time of the day, but it's best taken with an 8-oz glass of lemonade, limeade, or any fruit juice high in citric acid sweetened with with a little honey.  Honey is a natural source of Boron, which is listed as one of the "cofactors" along with magnesium, vitamin K and zinc.

[ThatHurtsMyHead]

Spiny,

Keep to it!  You'll come out ahead, I know it...!  O2+RC or fungus

PFW!

Jeff

[Guest]

Painpills suck too. I took one yesterday as well. It killed the shadows for 2-3 hours. It never helps the one in progress, but does give me few PF hours before the next hit. I know, addiction and rebounds are likely to occur, but  one to two pills in 24 hours hasn't caused caused addiction. The rest of the white little pills just sit there for the next really bad day. Too infrequent dosing for that bear to start re-bounding.

i know your just trying to get through your day, i completely understand. but if your taking a synthetic opiate, my advise would be to stop.

i was on steroids for months, i graduated to dexamethasone, predisone was no longer effective, and when my hips started to go (AVN side effect of steroids) i was prescribed darvocet (which has been pulled for causing heart attacks, add that with some imitrex and verap, ya might as well stab yourself in the chest)

i finally got off the steroids in april, may 19 2010 i called into work because i couldnt stand on my two feet my legs hurt so bad, i go to the doc and get these bs painpills, no more than 30 minutes after taking the first one i got hit, from the time in april when i stopped the steroids till may 19 i was pf, i have been unable to stop this cycle since, even when i had my 2 surgeries on my hips i refused pain meds, yea dispite having a 5 inch incision and a 10mm hole bored through my hip, CH hurts worse

not only will pain medication trigger for some suffers, cause rebounds, or intensify a hit, they also can block the effects of busting materials

pain meds wont do anything but slow you down IME mask a problem, and cause far more pain then they can ever prevent, addicition is also in there

like isaid i know you want to get tthrough your day comfortably but pain meds arent gonna do any good in the long run.

you say you have no appetite? i bet you were eating everything in sight when on the prednisone? after being on steroids so long my appetite is non existant, even after 18 months of being off them. i lost my sweet tooth, and basically just eat enough to stay alive

i agree that the steroids help in short term but in the long run they will not cure your headache, and the pain meds will slow you down and block busting. sure you may have a job, i did too, and to keep it you gotta do some drastic things, believe me i know, but think twice before taking these destructive pills, and remember there is not one drug on the market specifically designed for CH....yet

you got a long way to go to end up like me, but with that being said dont take the chance, cause at the end of the day when ya cant take the steroids and cant take the pain pills, you still got the headaches

AO

[Bejeeber]

Hey Spiny,

Thanks for the extra details and stuff. Sorry to hear how hard yer getting hit.  :'(

The latest replies from the fellas to your post are certainly golden and IMO when CHfather lays out some details they should be practically be enshrined as holy scriptures! Seriously, trust this guy - if it weren't for his one typo a year I'd be suspecting the 'H' in CHfather stands for 'Heavenly'.  ;D I'm diggin' how he spelled out the verap/calcium issue and it's solution for ya.  8-)

Here's a thingy bit I'd like to add:

I believe you may have mentioned before that the energy drinks don't agree with you (?). But coffee is burnin' the 'ol hole in the tummy and your O2 aborted attacks return every hour.

Well the energy drinks with the taurine are known to help the O2 aborts last longer for many CH'ers - like it could be a few hours between re-attacks instead of just one. Have I asked yet whether you've tried the teeny energy shots? They can be gulped in one swallow, and you could potentially immediately chase 'em with something that is tummy settling for you.....maybe it'd be worth snagging one from the mini mart down the street and trying it on for size?

[spiny]

A very nice nap from 9 to 12.  :)My hated head alarm woke me. So, start the coffee and hit the O2. O2 worked again, thank heavens. Then, the coffee kicked in and finished the work. For the moment, I am just jittery and bone tired. After this I will try to eat something. That would be a novel idea.

CHfather: Thanks. I am there on everything except the D3. I upped it this morning. The energy drinks make me nauseous, so coffee is my poison.

I did not know about offsetting the meds. I will try that today. Thank you.

AO: I had a great appetite at full dose of Pred., not when it was lower. I should have been starving, based on previous experience, but it wasn't so. I know 'roids are bad for you, I have read several posts regarding that. Besides, my hubby has no knees or shoulders - partly from 'roid shots to the joints many years ago.

Yes, I will get thru this' I am just very tired. Dr normally is booked 3 months out. I could go the the ER down where he practices and get a shot. That might end it and get his attention. He has no protocol for getting me in to see him ASAP, but he does have a standing order for CHer's hitting the ER. However, that means going off my mountain and then coming back up which is a trigger for me. Lower air pressure thing. > Everywhere I go is off this mountain and it hurts coming back home.

I am going to get thru today without any pain pills. I am taking the day off. 8-) Getting hit so often is killing me and leaves me running on 5 of 8 cylinders. As long as I don't have to deal with anyone, I can get by without any pain meds or cylinders. ;D Can a V8 run on two cylinders? Maybe, but it surely would run rough. That is today.

Off to try to eat something while all is calm. Thanks everyone. I am not at all happy with where I am and will continue to work on getting something that works. And I will say it again - Drs suck! >

If I could live on herbal medicine from Camomile to Echinacia and beyond, I sure as hell would. My herb garden grows larger every year, just in case the Zombie Ap. comes next year. Ya never know, I might just get cut off from the world up here.

spiny

the tired and hungry with a major feeling of disgust

I am just REALLY glad the O2 worked this time. 8-)