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Lucifer

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Pointless post, extremely upset.
Apr 12^th, 2013 at 4:56pm

So, for the past two days, I've had awful headaches. Somewhere on here I read I could vent. I'm venting.

I missed a full week of classes. And my teachers don't know what CH really are, so I don't expect them to really understand. I have no idea what I'm supposed to do. These headaches are getting worse for me. The pain is sharper, radiating further down. My neck is tender all the fucking time, I've damaged several of the walls hitting my head. I rent, so I pay for that. I can't work, because who wants to hire someone who gets these headaches all the time? And I'm doing poorly in school, because I am usually so exhausted I just cant. I should have graduated four years ago. Eight years in undergrad and not even done.

I deal with most of this. But these headaches are getting worse and worse and it's terrifying. You know what's worst, and I'm sure some of you do. Hearing your partner say "are you getting another headache?". I don't like aggravating my partner.

I'm supposed to get an MRI for an extremely unlikely chance this is a tumor, but the doc is just covering the bases. I think I would welcome a tumor at this point. That's awful news to get, I'm sure. But this is awful, too.

How the hell do you people deal with the undoubtedly severe external pressures this thing puts on you?

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Emjay

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Re: Pointless post, extremely upset.
Reply #1 - Apr 12^th, 2013 at 5:23pm

You haven't said but are you on any meds? Do you have O2? Imitrix? Even chugging Red Bull helps! Not to mention getting a preventative. If not, at the very least, try the energy drinks. They won't keep you "up" and may help manage the attacks, especially if you chug at the first hint of pain. Welder's O2 has been recommended elsewhere... Sad

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Brew

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Re: Pointless post, extremely upset.
Reply #2 - Apr 12^th, 2013 at 6:01pm

You should try taking matters into your own hands. The following treatment is proving successful for 80% of us that try it. It's still good for you, even if it doesn't work on your CH. And you don't need a prescription. And did I mention that it's still good for you even if it doesn't work on your CH?

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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Bob Johnson

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Re: Pointless post, extremely upset.
Reply #3 - Apr 12^th, 2013 at 8:45pm

I've read all of you posts. It appears that you are having difficulty getting focused on taking useful action to treat the Clusters especially since this disorder requires some systematic plan of treatment.

It would be useful to talk to your therapist (assume you ae seing someone regularly) about getting more focused in your thought & action. As you experience, it's really quite difficult to take useful action when you thinking/feelings are not on target.

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Bob Johnson

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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Pointless post, extremely upset. Reply #4 - Apr 15^th, 2013 at 8:42am Of course you can vent, and we do understand, but I recommend you take the advice given above. Along with venting we find it very helpful to discover ways and means of coping with the beast. This is our strongest suit to play. blessings. lance
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japanzaman

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Re: Pointless post, extremely upset.
Reply #5 - Apr 15^th, 2013 at 10:30am

Anybody who has suffered through clusters long enough knows that the pain, while definitely the worst part of the disorder, is only one part of what makes clusters as nasty as they are. Even for the best prepared of us, there are going to be times when they will pop up and ruin whatever we had planned for that time. Sometimes they can cost people their jobs, strain their marriages, affect school, etc. So yes, most of us have experienced to varying degrees what you are talking about.

But lets not be victims here, as difficult as that may feel sometimes. Getting on this forum was a good start. You also appear to have started down the path of getting some professional treatment, which is another huge step. Some people suffer for decades in silence before they finally get diagnosed and get relief. Do read into what the others here have posted, as they've all been around far longer than I and are probably 10x's as knowledgeable. I'll vouch for the D3 regimen, as my last cycle ended right about the time I started on it. The light at the end of the tunnel could be closer than you think!

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Lucifer

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Re: Pointless post, extremely upset.
Reply #6 - Apr 19^th, 2013 at 9:50pm

Hey everyone. I've tried energy drinks. I prefer monster, it tastes like french toast. I once drank 8 in a night. It does help a bit. I'm a recovering opioid addict, and during the post-acute withdrawal phase, we aren't supposed to consume caffeine and sugar because it affects mood and energy levels, etc etc. I started taking opioids as a young fool when I didn't know what these headaches were.

I have sumavel injections. I take lamictal, zonegran, gabapentin, and other unrelated medicines. The anti-convulsants probably make these headaches easier than they would be.

I tried the vitamin thing. I can't tell if it helped, but I also can't really afford to take massive doses of vitamin D at the moment.

One thing I wonder about, is Rhodiola rosea. I've been taking this for mood lift and concentration for a little while and I can't tell if it's helping or hurting the headaches. Other data might help. I do keep a headache diary. All I can tell right now from this is that I get my headaches at 930 am, 1130 am, 4pm, and 11pm.

Maybe weather makes them worse. I live in buffalo, and our weather is insanely stupid. Case in point; I woke up today and it was sunny, 70 degrees outside. When I got out of class at 11, it was 40, so windy it was rocking street lights, and pouring rain.

I need to take better care of myself. One sad reality I had to face while I was on drugs was that I was unable to depend on myself to take care of things. I'm fixing that, but the headaches killing me.

Try and imagine this for a minute. I'm struggling with school because of cognitive problems, when my stanford-binet score was so high pre-drug problem that I don't share it, nobody believes it anyway. I had a near-eidetic memory. Now I have a comatose dopamine-reward system and anhedonia.

So, I'm open to other suggestions here. Any herbal supplements that you think might help. I've cut everything that's not water out of the liquid portion of my diet. Also, I try to drink raw vegetable/fruit juice that I make myself with a masticating juicer, but I haven't done this in a while.

I definitely need to manage this better. More water is a good start, I will continue to take the vitamins as per my budget, but I'm willing to try other things as well.

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Lucifer

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Re: Pointless post, extremely upset.
Reply #7 - Apr 19^th, 2013 at 9:58pm

One last thing, concerning vitamin D. Assuming I find a good deal at whatever local drugstore I find one at, does taking such a massive loading dose of 50,000 IU of vitamin D have any side effects? For instance, if you take a massive dose of vitamin C, and I mean a masssssssive dose, you're legs become stiff and tired and you need calcium.

I'm going to give that a try, as soon as I can get that much vitamin D.

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japanzaman

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Re: Pointless post, extremely upset.
Reply #8 - Apr 20^th, 2013 at 10:54am

Most people here usually take 5000~10000 iu of D3 daily, but some report even higher levels. Batch would be the guy to talk to about this topic, as he's kind of been the pioneer in gathering statistical data and is quite knowledgeable about the different possible side affects of high D3 intake.

I'd be careful about chugging too many of those energy drinks, as I have experienced nasty rebound headaches from those things before. If you find yourself getting 4 hour plus headaches after the energy drinks, you may want to try another type of abortive like O2.

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Batch

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Re: Pointless post, extremely upset.
Reply #9 - Apr 20^th, 2013 at 6:46pm

Hey Lucifer,

Good question... Vitamin D3 dosing limits are much higher than most think... That said, too much of anything... even water can be harmful...

The good news is there's not been a death attributed to vitamin D3 overdose in recorded medical history... (You can't say that for verapamil)

There's a good reason for this safety record... As the body generates vitamin D3 in the skin when exposed to the UVB in sunlight... it also has built-in mechanisms for regulating its production and serum levels...

What you're looking for is a sum of dose and duration of dose over time to arrive at safe dosing limits... The following chart illustrates safe dosing limits as developed by experts in vitamin D3 therapy. You can find this chart and many others at vitaminDwiki.

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As you can see there's no problem with vitamin D3 doses of 100,000 IU... You just can't take that dose for more than two weeks and a couple days... You'll need to drop down to a vitamin D3 intake of 10,000 to 15,000 IU/day to arrive at a safe dose you can take indefinitely...

My wife has been taking 15,000 IU/day for over two years and loves it... She feels great, looks younger and has more energy than I've seen in 20 years... In short... no problems and her 25(OH)D is around 95-105 ng/mL. She also kicked the heck out of 75 last Christmas... Go figure...

Safe vitamin D3 dosing limits also depend on your present 25(OH)D serum concentration...

In reality, it's your 25(OH)D serum concentration that counts so you take as much vitamin D3 as needed to arrive at the desired 25(OH)D serum concentration. The following chart illustrates the 25(OH)D time course response to various vitamin D3 doses

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For example, based on data collected from here at CH.com and an online survey of CH'ers using the Anti-Inflammatory Regimen, CH'ers need a 25(OH)D serum concentration between 60 and 110 ng/mL in order to experience a therapeutic response... i.e., going pain free... This requires a vitamin D3 dose of 10,000 IU/day which results in a 25(OH)D equilibrium of 85 ng/mL after 4 to 5 months time...

Hope this helps.

Take care and please keep us posted.

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Guiseppi

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Re: Pointless post, extremely upset.
Reply #10 - Apr 24^th, 2013 at 8:16am

Vent away Lucifer, we all have/do! But when the vent is over, grab that damned bull by the horns and wrestle his ass down! Bob and Batch have given you some excellent advice. The best time to plan your strategy is when you're NOT in pain. D-3 is suprisingly inexpensive, especially when compared to our other treatment options. It's had me pain free almost 3 years, there's really something to it. Hope you find some peace, and some pain free time soon.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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DougglesCA

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Re: Pointless post, extremely upset.
Reply #11 - May 13^th, 2013 at 4:20am

Hey dude,

Shocked at how similar your story is to mine. Also am a recovering opiate addict (who has relapsed more than a few times since starting to get CH only to discover, to my horror, that heroin didnt even put a dent in this particular pain). I was a child prodigy in languages and music, working for New Times media by age 21, and now I like you am severely anhedonic with an effectively obliterated pleasure-center rwd system. I'm basically asexual now, and other normal human pleasures, eg a runner's high or being complimented, are pale cruel ghosts of a joke I no longer am capable of finding funny. Instead of the bottomless creativity I once had, I for example will get so irritated and forlorn over, say, reading a typical youtube simpleton's comment on whatever that any complex thought seems utterly futile and wasted on humankind, which I definitely no longer feel a natural part of post-addiction/CH onset.

Re: abstaining from caffeine and such during PAWS. I'd call bullshit on whomever's telling you that. I chugged coffee, sugar, and all manner of energy drink during withdrawal, post WD, three months of inpatient rehab and beyond without feeling any ill effects. Unless yr personal physiology is hair-trigger delicate I'd wager that the CH benefits of energy drinks far offsets any possible biochem. imbalances, but of course that's fully up to you.

Do you attend AA or NA meetings? They keep me alive, if only for giving me a chance to unleash such corrosive cynicism and bitter comedy that the keen pink-clouders are constantly in shock from me harshing on their utopian positivity and surely want me dead...but the grizzled vets, oh they feel the homie!

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Lucifer

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Re: Pointless post, extremely upset.
Reply #12 - May 13^th, 2013 at 5:20pm

Hey man. I don't go to NA or AA. I don't like the philosophy. It's my firm belief that forcing yourself to your knees and proclaiming "I'm powerless" is a sure way to feel weak and defeated.

You know how I finally worked up the courage to quit for good? I blew off my suboxone doc, threw all my medicine away, and wrote the following quotation from the Satanic Bible on my wall:

"...and all thy bones shall say pridefully: who is like unto me? have I not been too strong for my adversary? Have I not delivered myself by my own brain and body?"

whenever I felt like I couldn't handle it anymore I sat in front of the wall where I wrote it and stared at it. I wanted to be able to speak those words and mean them when I was done. I did.

I'm in danger of being dismissed from the university I attend. It's not my fault. I'm trying. I'm hoping this doesn't happen, as I'm literally one semester away from graduation (2 if you count the classes I need to re-take).

I am discouraged frequently. But it's getting better. I've found situps and pushups to be excellent for both my headaches and my personal difficulties. I guess when you take care of your body, good things follow.

Thanks everyone for your wonderful advice and replies. I really feel better when I come here. I am gathering up all of the vitamins/minerals in that regimen. Gotta take care of myself.

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