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update on my homeless situation (Read 900 times)
helm_r
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update on my homeless situation
Dec 3rd, 2017 at 8:06pm
 
Hey ya'll, thought I would give an update on my situation. I was turned down by that cluster headache because I have Hep C. It would screw up the medication study so that's a no go. My aunt in the Sacramento area decided to take me in until I can get medical help. So she helped me out big time, otherwise I would have already been in the homeless shelter on Friday.
Question about the D3 med combo. How much of each pill do I take? Not sure on the dosage but I want to start this as soon as possible. The Presidone didn't stop the attacks but kept them at 30 minutes instead of the epic 3 to 5 hour attacks I have been getting. But I took the last dosage of that today so I'm worried the attacks will go back to being horrible. Thanks for all your support everybody! I don't know what I would have done without this awesome support group.
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helm_r
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Re: update on my homeless situation
Reply #1 - Dec 3rd, 2017 at 9:19pm
 
Ok, I'm a dummy. I just re-read the D3 page and saw what I need to take daily. Going to GNC tomorrow to pick everything up. I'll let ya know how it goes. I'm really keeping my fingers crossed on this one.
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Mike NZ
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Oxygen rocks! D3 too!


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Re: update on my homeless situation
Reply #2 - Dec 3rd, 2017 at 11:06pm
 
Hi and good to see that you're being helped out by family, which will make a massive difference.

No worries about asking questions, plenty of us have posted similar things here and it is always better to ask than to not do so.

With stopping the prednisione it is likely that the CH will return since with the "short" CHs you are clearly still in cycle. Hopefully the D3 will kick in soon and whilst a 30 minute CH is better than a 3-5 hour one, even 30 minutes of CH is to be avoided.

It's probably hard to get access at the moment to oxygen or imitrex(sumatritan) but try quickly drinking an energy drink which has taurine and caffeine at the start of a CH. It can help it not be as severe or as long. Red Bull is one option, but see what else is available with the caffeine and taurine.

Hope things progress in the right direction for you soon.
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Peter510
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Re: update on my homeless situation
Reply #3 - Dec 4th, 2017 at 4:39am
 
Ryan,

Iím really delighted to hear that youíre situation has improved. Supporters are the most important thing we have.

I had been thinking of you and was concerned when there were no postings from you.

Follow the load dosing of the D3 Regimen to the letter and let us know how you are getting on.

Best wishes,

Peter.
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helm_r
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Re: update on my homeless situation
Reply #4 - Dec 5th, 2017 at 7:27pm
 
hey thanks Peter and Mike, you guys are solid. So I got my vitamins today. There is a range of UI with some of these, like magnesium 400 - 800 (I took 400) or fish oil 1000 - 2400 (I took 1000). How do I know what I need to start at? They only had the K2 not the K4 or K7 but the dosage list only gives UI for K4 and K7, so I wasn't sure of the dosage for the K2 (100mg) so I took 2 (200mg). And one other question. How long before this regimen take effect?
I drink red bull but I never thought to drink it before an attack. Neat!
Yeah, since I'm off the steroid they came back with a vengeance the last 2 days. It was almost like my brain got angry with me for tricking it with predisone. No oxygen or imitrex but I will try the red bull tonight. Thanks again guys!!
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« Last Edit: Dec 5th, 2017 at 7:29pm by helm_r »  
 
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Mike NZ
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Re: update on my homeless situation
Reply #5 - Dec 5th, 2017 at 8:31pm
 
Hi Ryan

From your questions...part of what it is right for you will be related to how much you weigh. If you're on the lighter end of the scales then the lower values will be more aligned with what you're likely to need and if you're on the heavier end then the higher end is more likely.

If at all in doubt, talk to your doctor / pharmacist.

Magnesium - 400 is a good starting point. Too high and you'll have the "perfect" cure for constipation.

Fish oil - 1000 is again a good starting point with higher an option.

For the K, try to find something with the right K vitamins.

Different people have responded to D3 with different time frames. For some it can be in a day or two, others can take weeks. If there is no significant improvement within a month, that is when things like the Benedryl might help.

The return of CH with a vengeance isn't unusual Sad
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helm_r
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Re: update on my homeless situation
Reply #6 - Dec 5th, 2017 at 9:52pm
 
Cool, thanks Mike. I weigh 190 lbs, not sure where that puts me but I'll re-read the material I have. Today is day one so I'll be sure to keep you posted on how it goes.
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Peter510
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Re: update on my homeless situation
Reply #7 - Dec 6th, 2017 at 6:05am
 
Ryan,

Make sure you stick to the load dosing schedule to the letter.

It is likely that you are D3 deficient and need to get your blood level up , but in a healthy way.

Mike is right. It took me about 4 weeks to start to feel the benefit. Having said that, I am a chronic sufferer. Episodic CH should respond a little sooner.

Nonetheless, stick with it.

Peter.
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helm_r
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Re: update on my homeless situation
Reply #8 - Dec 6th, 2017 at 6:16pm
 
ok peter, I figured it would be a few weeks for me too, being chronic and all, thanks man.
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Mike NZ
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Re: update on my homeless situation
Reply #9 - Dec 6th, 2017 at 10:46pm
 
It will take as long as it takes, so don't worry if it takes a bit longer but celebrate if it is quicker.
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helm_r
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Re: update on my homeless situation
Reply #10 - Dec 7th, 2017 at 2:04pm
 
Indeed I will.
Just a quick question for the rest of the CH suffers. Does anyone have a permanent headache during their bouts that never goes away? I always have this headache, ranging from dull and achy to downright migraine-like, that never goes away. No matter what I take over the counter or prescribed medications. Fiorcet used to tackle it but now does nothing. Having CH attacks is one thing but to ALWAYS have a headache is another, and its located in the same area where I have my CH attack. I had TMG issues 10 years ago but that has since been corrected and healed, plus there is no noise (i.e. crunching, popping or cracking) like there was when I was being treated for it. Could it be facial muscle trauma from the attacks? Lol, I know you guys aren't doctors but unfortunately I cannot see one until I get my Medicaid renewed which will not happen until at least January. This also means I probably will not be able to start seeing a specialist until February for my CH's.
On a side note. The Red Bull did help a bit to tone done the severity of the attack but I cannot drink 4 to 5 cans within a bed time period of 8 hours. I only get 3 to 4 hours of sleep a night (for the last 6 months) unless I have a monster attack which means I can be up for 2 days at a time. When a get my daytime attacks, which are always worse than the nighttime ones, it seems the Red Bull would be a good idea so I tried it yesterday and it actually helped abort the attack. I think that may be luck because sometimes at the beginning of daytime attacks I would peel off 50 push ups and it would work to abort the attack 50% of the time. I had a friend who would go running when he felt the shadow rising and he said the same thing too, sometimes it worked and sometimes it didn't.
Are there such things as taurine pills?
Being in constant pain 24/7 is to suck.
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Mike NZ
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Oxygen rocks! D3 too!


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Re: update on my homeless situation
Reply #11 - Dec 10th, 2017 at 11:02pm
 
For the constant headache, someone else has just posted something similar - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

We can't possibly diagnose what the cause of your constant background headache is (wish we could) but this needs you to see a headache specialist.

And it isn't too uncommon for people to have multiple headache types, with CH and migraine being probably the most common (including me).

Red Bull can be great as you can get it just about anywhere. But you've encountered some of the issues like not wanting to drink too many as the caffeine impacts sleep.

Others have commented before about doing things like frantic exercise or running with this helping, but for others this can kick off a CH.

If it works, give it a try.

There are taurine pills, but people haven't reported success. It seems that it is the combination of caffeine, taurine and carbonation that do the trick. Some people find the sugar free ones work, others not.

Pain is never fun. That is something everyone here will agree on.
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maz
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Re: update on my homeless situation
Reply #12 - Dec 11th, 2017 at 7:05am
 
So glad you have family support.  We all treasure our supporters.

I wouldn't say I have a constant headache between attacks, that won't go away, but I do have more than my fair share of "ordinary" headaches when I'm in cycle. I usually wake up every morning with a stinker after fighting CH all night, but the usuall over the counter stuff deals with it.

I agree, it's probably stress / tension etc, but we all different.
Let us know how you get on.
Maz
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helm_r
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Re: update on my homeless situation
Reply #13 - Dec 11th, 2017 at 7:33pm
 
Man, Gregg, I so sorry to hear that. I feel ya bro. You are right, when you feel like your life is cursed there is always someone else out there that has it worse than you. Life is brutal. I'm here for you man if you ever need to talk.
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maz
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Re: update on my homeless situation
Reply #14 - Dec 13th, 2017 at 8:27am
 
Oh Gregg - so sorry to hear of your situation.  I'd give you a home in a heartbeat if I wasn't half a world away.
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