New member and stumped

[Johnnynash1967]

Hi everyone and thank you all for all the advice and information everyone has provided. This site is literally a Godsend.
My story is simply this…. I was in remission for 11 years until about 90 days ago and the beast reared its ugly head. My GP started me immediately on 25mg of Topomax 2x/day and Imitrex Nasal as needed and I was experiencing 3-4 “hits” per day.
It wasn’t until about 30 days ago I found this site and I immediately started D3 loading as well as the caffeine and got a script for O2 with a mask/tube made specifically for CH sufferers here which all have been an incredible difference maker. Here’s where I’m stumped….. as I ended my D3 loading of 40k during my second week and moving to 10k daily my hits stopped for 4 days which I was ecstatic and thought my cycle had finally come to an end. On day 5 the “shadowing” started and they would last most all day which I control mostly with caffeine, O2 and sometimes a nasal spray if the pain is a bit too sharp, but the kicker is they last most all day BUT please know I’ve not had a full blown hit since finishing the D3. The shadowing has occurred now for several weeks and it seems the O2 treatment isn’t as effective as before as well as caffeine and I’m hitting my nasal sprays more often which I’m fearing rebounds hence being stumped. Has anyone experienced such a thing or have any advice that I may not be thinking about? Thanks in advance for your help. 

[BoscoPiko]

2 hours ago, Johnnynash1967 said:

I’m hitting my nasal sprays more often which I’m fearing rebounds

Hi Johnny,

The triptans are highly suspected to increase attacks and durations of cycles. I don't touch them unless on my death bed as they have extend my cycles and blessed me with many more attacks per day. Sometimes the effectiveness of prior aborts and prevents just simply become immune to the cluster bunny.. I do have to tell you that the topomax/Toprimax  most likely wont help much unless your looking to fog out whilst being banged up. Verapamil can help a bit, but the D3 that you started is what I would consider to be much more effective. I am always so mystified by remission times of the duration you speak of and can't help but ask what you were doing during that time? Maybe your just one of folks that get the longer time off of which I am happy for you. Sure seems like it would be harder coming back to the pain after such a long remission so for that I am sorry.  If you haven't already, do have some lab work done to see where your D levels are at along with your calcium (you may need to load a bit longer). The D3 reg takes a bit  to kick in so stick with it and do your best to avoid the triptans. Lastly do read the blue banner (new users read here) for additional methods of treatment. I am sure at some point the more knowledgeable will come along and try and help you! 

[CHfather]

Just a few unreliable thoughts . . . 

As Bosco' says, I'd try to avoid the triptan.  It sounds like you are doing that the best you can.  Many people find that ginger helps a lot with shadows.  Ginger tea (store-bought made from real ginger, or made yourself by peeling and boiling some ginger (look up specifics on google)); ginger candy (Ginger People or crystallized ginger); non-alcoholic ginger beer.  Excedrin helps some with shadows.

Some people find that frequent use of caffeine reduces its effectiveness.  You gotta do what you gotta do, so this is again just a thought for you to consider.  Basically, try not to drink it when you don't need it.

You might try some Benadryl, since sometimes persistent CH stuff results from allergies.  I think Batch would suggest trying Quercetin first, because it's less drowsy-making.  He suggests 3 grams/day, but you might start less than that (or not). Some people stick with the Benadryl (roughly 25 mg four times a day, as tolerated). 

On 2/24/2023 at 5:10 PM, Johnnynash1967 said:

it seems the O2 treatment isn’t as effective as before

I'm not sure that O2 is good for shadows.  I just don't know.  Haven't read of many people using it for that, but if it has worked for you, one possible reason it might be less effective now is that O2 is (for many people) less effective when the tank gets low on O2 -- maybe 1/3 full, or less.

Edited February 26, 2023 by CHfather

[spiny]

Go for another week of loading and see what happens. It could be that you are still too low on the D. Shadows respond well to ginger as stated above. And not sure where you are, but the pollen is coming out in many areas and Benadryl would be a big help there. 

Additionally you may find that you need 15k of D everyday, not 10k. It can make a huge difference if your maintenance dose is too low. I take 15k in winter and 10k in summer. 10k in winter and a cycle kicks in. 

[Johnnynash1967]

You guys are awesome and I appreciate all the input and advice. I’m located in Louisville Kentucky which is the “allergy capital of the US” they say because of being in the Ohio valley so Spiny you may be right on target there so I’ll load another week and then drop back to 15k. Like I was saying in my original message, towards the end of the second week of loading I felt like a new man and it was behind me so I think you’re on to something. Thank you for your suggestion. 
Bosco, I’m still stumped by the 11 yr remission. When I first discovered the beast 11 yrs ago it lasted only about 6 weeks and nothing since and I was doing all the things I shouldn’t have been doing back then like young and dumb guys do such as drinking, smoking and eating junk amongst other things. Now at 55, I eat clean, exercise and have no vices and the beast returns. Can’t make sense of it. However I will throw this in which MAY be something to think about…. I’ve struggled with neck and upper cervical pain since a car accident a few years ago which I’ve been getting basic treatment for such as PT, chiro, etc until 2 weeks before this cycle and I had RFA treatment which is radio frequency ablation shots in my upper back which “burns” the pain nerves in my upper back and neck area which gives me pain relief for up to a year until I will need to have it done again. It was my first time having the shots. Two weeks later after the shots, the beast returned. Not sure if there is a connection but wanted to throw that in there. 
And lastly, CHfather, after reading your message, I made a list and just returned from the store. Planning to start the ginger and Benadryl today. I thank you for your suggestions. 
I’m optimistic that these “all day shadows” that have lasted now for over 2 weeks are leading to the end but being 90 days in I’m praying I don’t convert to chronic. I just feel it’s controlling me and I need to get back in control of it. Thank you all again for your advice. I will continue to keep everyone posted. I can’t thank all of you enough. 

[Chris Moore]

Echoing what everyone else said 100%! Also, I take Advil every four hours when I’m in cycle as it helps me a lot with shadows. 

[kat_92]

@Johnnynash1967

hey Johnny, welcome, and I’m sorry:( the fact that I had to join this group sucks, but also amazing at the same time because I don’t know where I’d be without anyone on here…such a mixed bag of emotions. So I was at a point where I was trying O2 for shadows and it wasn’t doing anything, and it made me super frustrated not thinking that o2 was working for me. I just don’t think it works for shadows because they can last all day. And I was just wasting oxygen. At $75 a pop, I had to chill. For shadows I take ginger capsules. I buy them on Amazon. They’re pretty cheap for what you’re getting. I maybe take ‘em twice a day. 
 

I am like, the biggest advocate for getting off topamax. If you feel like it’s helping, do what helps. It didn’t help me, and almost made me feel like I belonged in a nursing home at age 26. It’s a horrible drug and I don’t think it works for CH…but again. If you’re seeing improvement. Make sure you discuss this with your doctor. I personally have success with verapamil, busting, and the d3 regimen. My insurance has denied all my triptans prescriptions. So that’s what I got. Keep us posted and good luck 

[devonrex]

My pharmacist called topirimate the "California drug" cause it makes you skinny and stupid. It did help to reduce my frequency, but ended up with a kidney stone and after testing it was the kind related to taking topirimate, went off it and my entire existence exploded, 5-who knows many hits a day, days on end awake because it will not let me sleep. Others have had the same experience coming off it as well, I hope that will not be the case if and when you go off it. 

Seems my triptan experience is also not alone, was doing injections and for a while, I could abort every shot, then one day one did not have the intended effect, then more often to nearly 50/50 shot if it would work or worse and the price....bec ame untenable to pay that much to work less and less