New on forum longtime episodic CH sufferer

[ta96]

I’m so glad I found this forum. I’m a longtime sufferer but having first cluster cycle in 3 years. Typically am able to abort the attacks from nerve block and prednisone taper. This time I’m unable to see the doctor for a shot until next week and I’m starting to panic. Typically my CH cycle begins with shadows, tingling in my teeth and then after a few weeks the attacks begin for a 1-2 week period and then subside. This one feels different. I’m very lethargic, almost constantly dizzy (vertigo feeling) during the day and then have moderate shadows at night. This is the first time I ever felt the vertigo type feeling, so of course I think something else is wrong. Unfortunately with my other symptoms, if it walks like a duck and quacks like a duck, it’s a duck. I absolutely hate Verapamil and have been able to avoid taking it because of the effectiveness of nerve blocks, but now I’m nervous I’m on the Eve of a full out attack. I began taking 8,000 iu of D3, but I have no idea if that’s doing anything for me (any advice on this is much appreciated). I am on a prednisone taper but nearing the end, which also makes me nervous. I when I’ve been in cycle I’ve been able to control the attacks with Sumatriptan shots, but a handful of times ended up in the ER (most often not seen in time because Dr. Thinks I’m a drug dealer).. only found 1 ER Dr. who understood. I have a very stressful job in the finance world and have several people reporting to me, but feel like I’m incompetent when in cycle. Nobody understands- I often get comments like, my wife gets migraines, or I get bad allergy onset headaches, etc. - it’s very frustrating and I often feel depressed and almost a burden to my family. My wife tries to help and my kids just don’t understand why their dad is so off. I know this story is repeated many times on hear, but virtuous if anyone has the vertigo feeling and if someone could please point me in the right direction on the D3 regiment. 
 

I appreciate everyone on this site, and after 20 years am finally reaching out.  

[BoscoPiko]

Hi Ta,

There is a plethora of info on this site specific to the D3 regimen. In the top search bar of the forum just type in D3 and be sure to follow the instructions from a user named Batch (handle XXX) there is more to making the D3 be effective than just taking the D3 (you need to take the co-factors). You never mentioned oxygen so I am unsure if you have a scrip or have tried it or not but many on here swear by it to abort. It works for me from time to time. There is a video on here that goes over the breathing techniques that seem to be effective with a non rebreather mask.  I was able to get the intensity of attacks to be manageable without the triptans on the D3 reg. I so understand the frustration with folks mentioning migraine etc. I think a majority of us have gotten that response a time or 2..      

[jon019]

...welcome....glad yur here, sorry you have to be....now,

...where's the OXYGEN?

Edited November 10, 2021 by jon019

[spiny]

https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

This link will get you started on the D3 Regimen. It is the first one and what I follow mostly. You will find that 8k of D3 is insufficient. More is needed. Along with the co-factors. 

I use this year round for my CH. It works.

ATB!!!

[CHfather]

Agreeing with the advice and info you have received so far.  D3 and oxygen are where you want to be.

In the meantime, if you have any old Imitrex, it will probably still work, even from three years ago.  But you ought to be splitting doses. See this file: https://clusterbusters.org/forums/topic/2446-extending-imitrex/  Once you get O2 set up, you will be using a lot less triptan.

There are some things that work for some people when they don't have standard abortives.  If you look in this file -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  -- under "Treatments without O2" (down toward the end), there a bunch of things to try, including energy drinks/shots (often works), voluntary "brain freeze," standing in superhot water (this seems to help a lot of people), and inhaling cold air from a home or car air conditioner.  You might also try starting on some Benadryl (4 tablets/day, or what you can handle and still function), because allergies have been shown to have a big effect on CH.  Also in that file, there's a long discussion of oxygen and maybe some other things you'd want to know.

Busting is also something you want to have as an option.  There's a summary of busting principles at the end of that file.

[Acanderson34]

I was told by my doctor to watch out for vitamin D toxicity. Has anyone ever heard of this?

[Shaun brearley]

Hi sorry you have had to find us but as you can see you have already had some great advice from some of the great people on here . I will just add a little bit to the advice you have received.  The shadows your getting can really get you down my advice is get some ginger capsules  I take 2 a day and it keeps the shadows away . 1100 mg capsules can be brought off Amazon for £9.99 well worth the money . 

[spiny]

Hi Acanderson! And welcome. 

It is advised to get a blood test to see where your D3 is currently. You can do this through your doctor or on your own in the States now. Lab Corp is one that will let you pay for a stab to see where your D3 currently stands. You want it to be over 80ng/ml. I tend to run at 100-110, which is fine. Toxicity is much higher. Some doctors can go a bit upset if your levels are on the high side, due to concerns over your PTH and Calcium getting out of whack. However, it has been shown that if those numbers are in the normal range, high D3 is not harming you.

So, get a blood test, then begin loading with the D3 and the co-factors. After a month or six weeks, get another test. Then you will know how close you are to the level you need to maintain to keep the beast away. It can be truly amazing!  Even if you do not go pain free the first year that you take the Regimen, your hits will be milder and the ramp up slower. Both are a good thing. More time to hit your O2 and caffeine and less pain all around!

Very happy that you found us! Sorry that you needed to of course. Lots of great people here and we are an understanding bunch who want to help.