Chronic, where do I fit in?

[Ajaxsouth]

I'm curious about where I fit in when it comes to frequency and quality of attacks. 

Truth: I've been lurking these forums for quite some time, years even.

I have headaches usually between 7p-11p daily to every other day for the past 7 years. Sometimes, I fall asleep and wake up 45 minutes later to a grenade in my sinus that continues every two hours til dawn. They are in the range of kidney stone/absess tooth pain and well past broken ribs. A weird secondary symptom is low frequency tinitus in my left ear that precursors the attack < has anyone experienced that?

I don't use anything to abort or prevent CCH and prefer the pain over causing further issues with prescription medication. A couple of neurologists want me to throw everything but the kitchen sink at the issue.

I am not weirdly immune to the pain. It hurts bad, but my brain allows me to forget.

There are a lot of 'I's above and I would like to know what you chronics deal with on the daily. Also, what helps you gain a few days of reprieve?

[jon019]

56 minutes ago, Ajaxsouth said:

There are a lot of 'I's above and I would like to know what you chronics deal with on the daily. Also, what helps you gain a few days of reprieve?

OXYGEN....OXYGEN.....OXYGEN!!!!   allowed me ...with an energy drink starter and D3 regimen on-board near complete reprieve.....with a Zomig NS in reserve and very rarely used but damn glad to have......

56 minutes ago, Ajaxsouth said:

I am not weirdly immune to the pain. It hurts bad, but my brain allows me to forget.

.....have always thought clusterheads have an elite ability along those lines...forget what's gone...we are sorta like Tiger the next hole after a bogey, Goose Gossage with bases jammed after a third strike the ump missed...or Adam Vinatieri from 49 in OT after missing the previous kick.... 

Edited March 1, 2022 by jon019

[CHfather]

1 hour ago, Ajaxsouth said:

I don't use anything to abort or prevent CCH and prefer the pain over causing further issues with prescription medication. A couple of neurologists want me to throw everything but the kitchen sink at the issue.

No need for the kitchen-sink approach, agreed. But as jon' said, at least you should have oxygen, which is not going to cause "further issues."  And done properly the D3 regimen has no associated issues, or virtually never has any (and those are stopped if you stop the D3).  Do you drink coffee?  It helps stop attacks.

[Ajaxsouth]

Thank you Jon and CHfather, I have been working on getting some O2. It's pretty tough to get ahold of with a lot of the suppliers denying sales to private buyers.

I've been reading up on the D3 regime and will try it. 

I love coffee, but refrain from chugging a cup when I feel the dread coming over me. It is mostly around 9pm and I don't wanna be wired. Have to get up at 630a.

[CHfather]

1 hour ago, Ajaxsouth said:

It is mostly around 9pm and I don't wanna be wired. Have to get up at 630a.

You might try it once.  Many/most people find that even a 5-Hour Energy (much stronger than a cup of coffee) doesn't keep them up.

1 hour ago, Ajaxsouth said:

I have been working on getting some O2. It's pretty tough to get ahold of with a lot of the suppliers denying sales to private buyers.

If you are in the US (or one of many other countries), suppliers of medical O2 won't provide it without a prescription.  There are also some that won't provide it even if you do have a prescription, if you want to pay separately from insurance (or you don't have insurance).  And lately we've been hearing about suppliers "rationing" O2, even for people with prescriptions, because of COVID-related shortages.  Of course, if you don't have a prescription, you can always get welding O2, which is used by a significant percentage of people with CH.

[spiny]

Hey Ajax! I would definitely try some caffeine once or twice at the first sign of a hit. I think that you might be surprised at the result. I use just regular coffee as the energy drinks do not agree with me. 

You might want to start the D3 Regimen. Here is the most basic form of it: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Get your bloodwork done or obtain a copy of your last blood panel. You want your D3 level to be at or above about 80ng/ml. 

Many of us use welding O2 and just buy the O2 from the local supplier for the welders. Don't say it is for you to breathe. Get that with a Cluster Mask and you can set up a great system for aborting your hits. The key is the mask and a regulator that goes high enough for your needs. If you try a medical O2 supplier, they will want a script!!!! The welding supplier will not.

For rinse and repeat nights, you might find it easier to rest in a recliner. Lean back, but keep your head above your heart. I use a pile of pillows for support. Many chronics use the recliner as their bed. It seems to mitigate some hits and does help you wake faster with a fresh hit so that you can treat it quickly and kill if more easily. I prefer to sit up for hours pain free over waking in 15 minutes with a hit from being prone. And after the first night or two, I can sleep in the chair pretty easily, not as refreshing perhaps, but much better than all night hit after hit. They will roll back to my standard 4 per night if I use the recliner, otherwise I get hit within 15 minutes of lying back down and falling asleep. 

Inhaling cold air helps a lot of people. Go outside or turn on the ac in the car and stick your nose up to the vent of blasting cold air. It can help a lot for some.

I used very hot water in the tub. Shallow to start. Sit down and put a cool washcloth on my head. Add to the water to keep it roaring hot. This would shorten a hit dramatically for me. Thirty or forty minutes vs just over two hours. 

Some will put an ice cube in their mouth and hold it against the soft palate on their CH side to attain relief. 

With all of these abortives, the next hit is still going to come. Using a chair and the D3 are the two things I mentioned that will actually help to stop the coming hits. D3 can prevent a cycle too. 

ATB!

 

[Ajaxsouth]

CHfather, I will try it out on the weekend so if I stay up it won't be a big deal. If it works for me I'll be glad to stay up a little late anyway

I am in the US and you hit the nail on the head when it comes to O2. In my area some companies restricts sale to vets only.

 

spiny, thank you so much for all of the ideas!! I have noticed going outside in the winter makes me feel better. I have yet to try cold head/warm body in the bath, but look forward to seeing how it works. D3 seems to be a recurring aid and I'll work with my GP for blood work.

LIke CHfather said above, it shouldn't cause many issues and I can always stop if needed.

[spiny]

Ajax, a face plant in snow can help too!!!  Truly! 

You are in the States, so yes, get on the D3 Regimen ASAP! No, nobody likes to take a fistful of pills. But if I can toss back a handful to avoid the hell of CH, I do it!! You need your calcium and PTH along with your D3 to be within proper parameters. My D3 stays at about 103 to 105 every blood draw. A tad high, but my doc knows why and has no issue as long as the others are in spec. 

Forgot before, but yes, tinnitus gets louder for me too. Glare......

[CHfather]

12 hours ago, Ajaxsouth said:

I am in the US and you hit the nail on the head when it comes to O2. In my area some companies restricts sale to vets only.

If you can't get medical O2, please seriously consider welding O2.  Here's some info about it: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

[Juss]

@Ajaxsouthis there an RE Michael in your area? If so, you could see if my HVACR contractor account is active and use that. My licenses are expired, but they won't give a shit, I was closely connected to the corporate based out of Glen Burnie, MD. My boss was an executive at one point. And at that company I was the lead tech, future hired gun. 

That was many moons ago, but I doubt they would have closed my account? If not, I may have my refrigeration account open with United Refrigeration. That license is long expired, they won't give a shit either. 

My plumbing licenses are expired, as are my gas fitters those supply houses would give you a tough time. My electric license would be useless.

The problem is that I am Mid Atlantic, East Coast. I have no clue if they are at your location or where you are. If any are open, work, industrial O2 is better. Any impurities and we go kaboom. Get my drift? And welding does not go well with that shit either. 

I never held welders licenses but did do some as part of pipe fitting, panel welding on bodywork, and exhaust work. Wait, nevermind, I know that those accounts are closed.

You are welcome to try them. I'll make some bullshit excuse up for why you are buying assloads of tanks. If you were buying tanks of Nitrogen it would be much easier-way easier. 

I am not going to club Fed over you purchasing refrigerant. Nor will I lose my EPA 608 over you trying to slip me a Mickey. I will put a stop order on all refrigerants. Especially R22, R404A, R404B. And yes, I still have R12 (useless), and cans of candy apple lacquer (useless).