Questions and a conclusion

[Kevin B.]

Hello people. this is Kevin B. formerly Kevin Broderick. Lots of problems and questions on my part.

Into my 11th week of episodic CH. This is almost twice as long as any cycle I've had before although the attacks have diminished somewhat in intensity. The following is an update on some of the things I have tried and questions about other possibles.

I had bought the syringes and vials in order to try and split the dosages of injectable Sumatriptan. It does not work for me... after trying to inject the triptan liquid into a vial, pressing hard with the triptan pen against the top of the vial did not work. I got nothing. When pressed against my skin, of course, it worked just fine. I don't know why that is. makes no sense. Also tried cutting another injector that was used. It took me about 30 minutes of cutting to finally get through, then there was another layer of plastic sheathing protecting the "precious medicine"!!! I gave up on that method also. I have not used the injection since...

Secondly, I completed the D3, 12-day loading with all cofactors two days ago with no definitive results other than the continued diminished number of attacks on some days and no 9 or 10s... mostly 3-5s and lots of shadows. At that point, I re-read the article that Batch has out there. From what I understand, if one does not see some results you can continue with the loading for another period of time which I am doing--on my 14th day so far. If this is not correct, please let me know. I'm doing all this pre blood testing. That will come later. I'm not worried about that at this point.

Going the O2 route. I might be wrong but from what I understand, I would need to get the large M cylinder. If not, correct me. I also wanted to know how long or approximately how many CH attacks would one of those last. How much does it cost? I live in the Atlanta area on the East Coast of U.S.  Anyone have approximate numbers?

My last question: Can episodic CH become chronic because this doesn't seem like it's ever gonna stop!

Just getting over a CH wakeup call at 5 AM. about a 4/10 but more than enough. My problem is once I'm up, that's it for the rest of the day into the night, I've been a walking zombie for a couple months. Thanks for listening to my rant. I really care about all the folks out there with CH. Sending my best to you

Kevin B,

 

 

[Inno]

Hey Kevin,

I can't recall if it was ever mentioned to you, but did you try aborting with DMT.
aside from the obvious need to get oxygen asap, DMT has shown to be really helpfull.

I usually fall asleep after an attack because it took all the energy I had (even in daytime),
but it helps to stay amongst the living for a few days instead of going straight to zombieland when in cycle.

 

I'm definitely no expert on the d3- regimen so I'll leave that to others.

 

Hope you get some PF-time soon!

[Kevin B.]

Hi Inno, Thanks for the response. Yes, I know about DMT, L, MM, etc. but don't think I'll ever go there. Alot of it has to do with availability and is illegal in most of the US. I'm 75 and don't have the "connections" anymore like I did back in the 60s-80s   Thanks again brother.

[CHfather]

1 hour ago, Kevin B. said:

Going the O2 route. I might be wrong but from what I understand, I would need to get the large M cylinder. If not, correct me. I also wanted to know how long or approximately how many CH attacks would one of those last. How much does it cost? I live in the Atlanta area on the East Coast of U.S.  Anyone have approximate numbers?

Do you mean that you are getting an O2 prescription from a doctor?  That's the only way to get medical O2.  If so, it should be covered by your insurance, maybe with a relatively small copay.  Insurance companies aren't always cooperative.  I don't know what the cost would be without insurance. There will be a lot of medical oxygen suppliers in your area, both big national ones (Airgas, Lincare) and also local ones.  Sometimes a doctor will send your prescription to a provider s/he prefers. 

An M tank is definitely preferred. There are several "M" sizes, but at the least It contains about 1800 liters of O2, so if you were using 15 liters per minute, that would be 120 minutes.  (However, many people find that O2 is less effective as the level in the tank gets lower, so you can probably count on roughly 90 minutes.)  You can live with several small E-size tanks if that's all your supplier has, but they will give you only two or three aborts each (680 liters), and the supplier is going to be making a lot of deliveries. Ideally, you want the large tank for home and smaller tanks for portability (in your car, for example).  

So when the prescription has been sent to a medical O2 provider, you want to call them and tell them you have CH. Most providers are used to dealing with people who have COPD, where the requirements are much less.  Here's something that was written about dealing with a supplier.

>>>>To avoid frustration, it might be wise for you to contact your O2 supplier before their first delivery to make sure you are getting the right equipment.  Many of them are not used to providing for people with CH.  You want cylinders (tanks), not a concentrator.  At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank).  Multiple versions of each tank are better.  You need some kind of stand, at least for your larger tank(s).  You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask.  These are all things they should know to give you to treat CH, but often don’t.  When the stuff is delivered, have the delivery person set it up for you and be sure it's working.<<<<

There is more about O2 system requirements in the "Oxygen" section of this document: Basic non-busting information - ClusterBuster Files - ClusterBusters

If you are planning to get welding oxygen, the "M" designation doesn't apply -- those tanks are designated in cubic feet.  We can tell you more if welding O2 is the way you plan to go.

15 minutes ago, Kevin B. said:

Yes, I know about DMT, L, MM, etc. but don't think I'll ever go there. Alot of it has to do with availability and is illegal in most of the US. I'm 75 and don't have the "connections" anymore like I did back in the 60s-80s

I think this might have been said before, but rivea corymbosa seeds [RC] are just as effective as MM -- they work for most people but not all, same as MM.  RC seeds are legal to purchase and possess, and it is very simple to use them (grind, soak, drink). And they are virtually tripless at therapeutic levels.  Not pushing you on this, just letting you know about the option.  The preferred reliable provider is Schmerbals Herbals, which is based somewhere in the Southeast, as I recall. 

 

 

[Kevin B.]

Thanks @CHfatherI have contacted that company, asked for info and waiting for response about RC seeds. They have 3 diff types.

Still had questions re: D3 reg. Do you or anybody know if I should continue this even if this cycle ends? Is this a year around thing with the reduced D3 and co-factors?

I'm making an appt w Doctor today about the O2. She might not be available for a while but working on it.   Thanks again

[CHfather]

For most people, D3 is year-round, at somewhat reduced levels, but enough to keep the D in your system high.

There are three kinds of seeds listed at the Schermbals website if you search for "rivea corymbosa," but the one you want is the first one, "Untreated Ololiuqui Seeds." 1/4 ounce ought to be plenty, based on the statement there that 1 ounce = about 1200 seeds.

2 hours ago, Kevin B. said:

I'm making an appt w Doctor today about the O2. She might not be available for a while but working on it.

Is there a PA or someone else in the office you can talk to?  The question would be, Does she prescribe O2 for CH?  All doctors should but many (for perverse and unhelpful reasons, like not knowing how to write the prescription, or thinking that Trex and O2 are equally appropriate treatments), don't.  If she doesn't typically prescribe it, you can bring all the medical information anyone should need to be persuaded, and you can subtly offer to help with any other part that troubles her.   

[Kevin B.]

Don' know what her opinion is on O2 prescription but will find out when I get in to see her. But then again, maybe I can get a hold of a nurse and ask

Thanks for the info on the seeds. When I do get them, I'll check back to find out how to use them.

[CHfather]

It's good to find out in advance if possible, so you can be forearmed.  If you know that she doesn't prescribe O2 for CH, and you don't want to fire her right away and find someone who does, you can bring the most persuasive medical research with you to make your case (although any of the online or print references that doctors look at for prescribing list oxygen, along with injectable sumatriptan, as the #1 abortives) (The basic medical research (double-blind, placebo controlled, etc., from 2009) is here: https://jamanetwork.com/journals/jama/fullarticle/185035.)

[Shaun brearley]

Hi @Kevin B.@CHfather has covered most things you have asked and he knows his stuff!!!!!!, as for the length of your cycle, it happens buddy, I'm episodic, started off with 3 month cycles, which have now turned into 8 month cycles that's just the way the beast works, he likes to F--K your head up as much as he can, stick with the D3, I understand your thoughts on MM, and L, but  it works for so many of us, at the end of the day we have no1 willing to help us with CH, so we do what we have to do, RC seeds seem to work for alot of people with CH, it's legal so give it a try, good luck my friend 

[Kevin B.]

Thanks for replying, Shaun. Hoping it doesn't last that long! I have ordered the RC seeds and they should be coming pretty soon and soon enough will be getting back re: this method...continuing with D3 as well

[Kevin B.]

CHfather, thank YOU for all the help you've given me since Jan. '24 when I first became a member. I'm sure I'll have more questions in the future. Later