Has anybody found an effective treatment for the shadow headaches? I am at what I hope to be the end of an eposodic cycle and have been using o2 and Sumitriptan for severe headaches. The current cycle I am on has been a bit different than what has been usual for me...I have been having way more shadows than in previous years. About a month prior to the severe episodes, I started to get dizzying, disorienting shadows; ringing/buzzing in the head and a general kind of dizzy feeling accompanied by some very minor (in comparison) pain. The shadows have been almost constant since then, even through the more severe episodes. I have been free of severe headaches for a few days now but still have the shadows....has anyone found anything that works for these? Is O2 an effective option?  

Heck go huff some O2 and get back with your results.  Can't hurt.

                     Potter

The O2 I have now is only a 7lpm concentrator...I have the paperwork in from my Doc to get an "m" tank and have ordered a regulator to get that to 20 lpm, but that wont be delivered untill Tuesday, with the Holiday and all. I think the Sumitriptan was what was really working, but I've been using the O2 anyway as It can't hurt

Hi,

I think you and I had twin cycles. I also had very regular cycles but as soon as I stopped taking my big hits my cycle would come to a conclusion after 6-7 weeks. Not this "Mother" though, it lasted almost 12 weeks with the last two being constant shadows.

I'm new to all this medication even though I have been suffering this crap for 20 years...Misdiagnosis :'(. Anyway I took a small taper of Prednisolone at the end of my cycle and it finished of my constant shadows and brought me to the end of my cycle.

Lefty...!

The oxygen at a higher rate will probably help kill the shadows. Always works for me.

I'm a little teeny bit bothered by the changes you described this cycle. That dizzying, ringing in the ears, disoriented stuff....wouldn't hurt to have a sit down with the doc, make sure he's aware of the change and get his input. We get so used to the CH stuff we don't always pay attention to symptoms of other stuff. Probably a "nothing burger with fries" but still should yak with the doc about it. Hope the cycle is about polished off! ;)

Joe

I should have mentioned that a month or two prior to starting what turned out to be another cycle, I did see the doc. As a matter of co-incidence, I had the flu and also the very minor headaches and dizzyness that I'm sure now was the shadows, but at the time, I was not aware that they were related to the CH's (it had been 3 years since my last episode) The Doc thought they were sinus related and I even had another CAT scan and nasal X-rays because they were bothering me so much. This was sometime in March, I think, and we didn't make the connection to CH's until I got a very severe attack in late April. Then it all kind of made sense, but it was never the norm in my cycles to have the shadows be as intense and proceede the severe period of the cycles as they have done this time. I have seen from reading these posts here that some folks do see changes in their cycles, so I suppose that is what has happened here.
One of the initial meds I was given upon realizing I was again in another cluster cycle was a steroid taper; 60mg the first day, decreasing by 5mg a day for 12 days. I really didn't notice if that helped; the more severe attacks were on my mind at the time...I'm wondering if it might be of some help to see if another steroid taper type med would be benificial at this "downside" of the cycle....anybody have any thoughts on that?

Certainly worth a shot. Steroids tend to work one of 2 ways. For people like me, they block the CH completely while I am taking them, but when I go off the prednisone they come right back. I use them for the 2 weeks I'm waiting for my prevent, lithium to become effective.

For others, a 10-14 day "blast" of steroids will completely abort a cycle. So whether it gives you a 2 week break, or ends the cycle completely, it's hard to go wrong with it. Just be sure and work closely with your doc on it.

Hoping it works for you.

Joe

Thanks very much, I will certainly give that a try...It's a real blessing that we have the internet these days and can communicate and exchange information like this.
How in the world did ANY of us survive without this site?

How in the world did ANY of us survive without this site?

I honestly don't know. Dang glad you found us! [smiley=hug.gif]

Joe

very weird the same thing is happening to me this cycle is soo different from the past....i haven't got any ch's in 8 years i had the flu about a month ago with a sinus infection and as soon as i felt better i got woken up with a major one and they have been building since. i discovered heat is working for most of them i just wrap a heating pad around the back of my neck and it seems to keep most of them controlled but like i said they are slowly getting worse. i am getting lots of shadows as well which i never had before in the past they came quick and lingered for about 45 mins. as i write this i have a slight pain in my neck and teeth and some throbbing in my temple. good luck i'm sorry to say it but i'm glad i'm not the only one who is completely confused lol.....but i guess it could always be worse.....right???? :D

i feel i need to add this.......since everyone is different i'm just saying this as my personal experience. but be careful with prednisone i took that once and it was my worst mistake yes i was completely pain free for about a week and a half but when i got back down to like 2 or 3 a day they came back with a vengeance i had a couple of 3 plus hours of the worst pain i ever felt in my life that was a scary time for me if it wasn't for my mother i probably wouldn't be here today. again thats just me and i realize it's not the same for everyone. just felt i needed to add my 2 cents....good luck

I attempted to get another round of a steroid taper to see if that might help with the shadows, but my Doc said that might not be a good idea, as I already had a script very early in May, which was right about in the middle of the worst part of my cycle. As I sit here and think back, it probably was effective to some measure in dealing with the shadow headaches that were present in between the very severe attacks that were occuring at night. I think you can kind of lose your focus on the smaller issues during those times, but I think that might have helped. Is there a general "safe" period of time that one should wait in between a steroid taper?
I also finally did get a better script for O2, but I will have to persue a better source, as the med supply company can only give me "E" tanks that last less than 30 mins at 15 lpm...rather than using them at 10 min clips for severe headaches as described on the O2 page, I have been hitting on them for 2-3 mins at a time when the shadows get a little more intense, which for me is also at night. That has helped enough to get me back to sleep. After 3 nights with only shadows, the last two nights the headaches have returned, both nights relatively minor 4 or 5 kip and both nights also multiple occurances; 1:30am and 5:30 am. The O2 seems to help, as does the occasional Red Bull. (is there a better caffine alternative than Red Bull and all the BS and Sugar that they have? I used to HATE Red Bull, but now it sure comes in handy)
 Now, I am hoping I can make it till Monday and maybe will ask for 3 or 4 "e" tanks untill I can find another supply company that my insurance will cover and that might be able to get me a higher flow regulator and perhaps an "M" tank. If there is any balance to the cycle, meaning if I can expect the same amount of shadows on the downside of this cycle as I did on the upside, I am going to need it!!
 I'd appreciate any comments or thoughts anybody might have regarding shadows and if they have seen changes in their normal cycles.....thanks

In the past I have gone on a long term, low dose of prednisone such as someone would use to control asthma etc.  It was helpful in controlling clusters, but I wont say that it didnt have a lot of nasty side effects. (shaking, bloated face, and hands and feet etc.,hear palpatations etc).
 I didnt use it just for shadows however, just in preventing big hits.  

Maybe if you didnt use it for too long, a lower dose of steroids taken for a while would help with your shadows.  I am notsure if that would set you up for rebounds though.
Ask your doc.

good luck,
Christine