Click this link to read a post I like on the clusterheadaches.com message board...

Billie

CH.com Junior

Offline

I Love CH.com!

Posts: 62
Maryland
Gender: female

Rude Awakenings
Feb 28^th, 2012 at 8:24am

For the past couple of nights, I have woken up at least 3 times with a CH. I know it's common to wake up with these things, but this is excessive for me. I just started oxygen, and this might seem like a silly question, but could they be rebounds from oxygen? Either way, I will keep it around because it does help. I think the place where I get it refilled though thinks I'm a little nuts because I have to go every day to every other day, but the tank only lasts for 4-5 CHs.

I also started melatonin 2 nights ago at 5 mg. Is this something that usually works right away for people or something that takes time, and what dose seems to work? I know it may not work for me, but any input would be great about this so I can at least say I tried.

Back to top

http://www.facebook.com/smithbilliejoe?ref=tn_tnmn

IP Logged

Click Here to visit the CH.com Facebook page!

wimsey1

CH.com Alumnus

Offline

I Love CH.com!

Posts: 2457
MA
Gender: male

Re: Rude Awakenings
Reply #1 - Feb 28^th, 2012 at 8:47am

Like you, I had three attacks last night and once again, I knew they would continue unless I used something stronger, so I took a 4mg shot of imitrex and that did the trick. I don't think the O2 is causing rebounds. It does abort the hits, but rather than thinking it is one long attack broken into segments, I believe it is a series of separate, maddening attacks. If this keeps up for me, I will go back to staying up between hits and aborting as early as possible without having to have them awaken me. The melatonin amount is highly individual. 5mg sounds like a middle of the road amount. Some take more. I take 10mg. Some believe less is better. It's a matter of trial and error. On that tank issue. Why not get a larger tank for home use (H or J tank) and use the smaller E tanks for travel and emergencies? That way, you're not filling a small tank so often. God bless. lance

Back to top

IP Logged

Bob Johnson

CH.com Alumnus

Offline

"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: Rude Awakenings
Reply #2 - Feb 28^th, 2012 at 8:59am

Melatonin is useful for some but it's not highly rated in terms of effectiveness compared to, e.g., Verapamil, for prevention.

Are you using any long term preventive? Only using an abortive is leave off half of the treatment. (see the PDF file, below.)

Re. Oxygen. The effective life of oxygen is short and so you are experience "recurrence":

Rebound headaches. "Rebound Headaches--A Review", Au. John S. Warner, M.D., in HEADACHE QUARTERLY, 10:3(1999). (There is some confusion on the board about the meaning of "rebound". There appears to be an emerging consensus in the medical literature to define "rebound" as a headache which is caused by the overuse of any medication used to abort a headache or relieve pain. "Recurrence" [of a headache] is being used to refer to the redevelopment of an attack when its "normal" duration is longer than the useful life of the medication which has been taken. That is, the medication effectiveness is reducing before the headache has come to an end; the pain redevelops.)

Back to top

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

(96 KB | 16 )

Bob Johnson

IP Logged

Billie

CH.com Junior

Offline

I Love CH.com!

Posts: 62
Maryland
Gender: female

Re: Rude Awakenings
Reply #3 - Feb 28^th, 2012 at 10:32am

Yes, I use verapamil and just started Lamictal. I just had my dose upped from 120 to 180. The 120 gave me 2 years without these things when 1st started; so, I am okay with the low dose, and it gives me room to go up. I am wondering if it takes a while though for the 180 to start being effective, as it took 2 weeks for the 120 to begin working initially. I am not at the full dose of Lamictal yet either because apparently you have to go up very slowly because of some kind of deadly rash that can occur. I am not sure how this medication will work, but it's always worth a try.

I am on no other abortive except oxygen at this time. My neurologist was thinking of starting Zomig, but when I asked for oxygen that idea just kind of got lost.

Back to top

IP Logged

Bob Johnson

CH.com Alumnus

Offline

"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: Rude Awakenings
Reply #4 - Feb 28^th, 2012 at 12:27pm

Is there a medical reason for holding your Verap. down to 180? Expect you are aware that doses of 400-900mg are not uncommon for Cluster.

Any dose change will take seveal days to take effect to the point of making a judgment.

Lamictal has been arouind for several years but I can't find any reports for use with Cluster which evokes any optimism. Hence, my question about Verap. dosing.

Back to top

« Last Edit: Mar 1^st, 2012 at 9:48am by Bob Johnson »

Bob Johnson

IP Logged

Billie

CH.com Junior

Offline

I Love CH.com!

Posts: 62
Maryland
Gender: female

Re: Rude Awakenings
Reply #5 - Feb 28^th, 2012 at 8:27pm

No, no medical problems to keep the dose of verapamil that low. That's just the dose I was started on even before they diagnosed me as having cluster headaches, and I had no CHs at all after 2 weeks of starting it for 2 whole years. I'm guessing they are thinking that if it started working at such a low dose to begin with, they will just go up a tiny bit more to see how it works. If the low dose works, I am fine with it because, like I said, there is room to go up if I need to.

I had a feeling the Lamictal was not a top choice. I guess I will just have to wait and see how it works on me after I finally get to the full dose she wants me on.

Back to top

IP Logged

LasVegas

CH.com Sponsor

Offline

Episodic CH since 11 yrs
old, now 50.

Posts: 2020
north of the 60th parallel
Gender: male

Re: Rude Awakenings
Reply #6 - Feb 29^th, 2012 at 12:04am

Hi Billie,
You are not the 1st to ask these questions, nor will you be the last. You are not alone and this will get easier once you understand abit more about your condition and required treatment to help yourself. Wink

Hopefully you are using o2 properly which requires a NON-rebreather mask and high flow regulator.

Hyperventilating the o2 requires a high flow rate of at least 25 lpm.

Stay on the o2 for about 10 minutes AFTER you successfully abort the attack. You don't have to hyperventilate during these last 10 minutes, just breathe normal at a lower flow rate such as 15 lpm or less if you want. This extra 10 minutes will help avoid a "re-attack."

Larger 02 tanks = less trips to get o2 refills.

Melatonin...many here report this does not work. Others report it does help alleviate night hits. Might try higher dosages such as 9mg, 12mg and more. Increase for a few nights and trial/error and decide what's best for you, then increase again if required. Melatonin is not meant to replace a preventive med such as Verapamil.

Verapamil...see a thread under medications/treatments board titled "Verapamil Dosage." Higher dosages than what you are taking is more common for CH treatment.

Lamictal...not familiar.

Research the yellow tabs on left side of screen for many of your answers you can't easily find on these thread postings.

Be tough! Wink

-Gregg in Las Vegas

Back to top

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: Rude Awakenings
Reply #7 - Feb 29^th, 2012 at 12:30am

Hey Billie,

Welcome to the world of oxygen therapy users... The increase in the frequency of your CH after starting oxygen therapy is quite normal. Nearly all of us experienced an increase in the number of CH after starting oxygen therapy...

The reason for this is very simple. The physiological effects of hyperoxia dissipate very rapidly... like in minutes.... If the CH triggering mechanism is still active/present when the hyperoxia wears off, guess what... You get whacked again...

If you're fortunate enough to have an oxygen flow rate of 25 liters/minute or higher, and are able to push your system into respiratory alkalosis, things get a little better, but you'll still likely experience an up-tic in the frequency of your CH.

The good news is the increase in the frequency of your CH is temporary and should drop after 3 to 4 weeks of use...

I know it's frustrating to wake up so many times a night to use oxygen therapy... but if you stop to assess the situation... You notice you're able to abort most of your CH without needing to take one of the triptans with all their side effects, the cost to abort is much lower than the other abortives, and there are no side effects of using oxygen to abort your CH.

Knowing the present increase in the frequency of your CH will soon reverse and by the end of the 4th to 5th week should bring some hope of comfort. In fact, the frequency of your CH will be much lower than normal by the time you reach the fifth week of oxygen therapy.

Please sing out if you have other questions about oxygen therapy or the anti-inflammatory regimen with 10,000 IU/day vitamin D3. The vitamin D3 will help lower the frequency of your CH... Big Time!

Take care,

V/R, Batch

Back to top

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

IP Logged

Billie

CH.com Junior

Offline

I Love CH.com!

Posts: 62
Maryland
Gender: female

Re: Rude Awakenings
Reply #8 - Feb 29^th, 2012 at 9:12am

Thanks Batch! I definitely am keeping the oxygen whether it makes them increase or not. The benefit of aborting these suckers is well worth it to me. I just went for a refill, and they gave me 2 tanks this time because apparently they don't have the big ones. So, that is going to make things a little easier. My regulator only goes up to 15. I don't know if I could handle much higher to be honest because I find 10 to be fast to keep up with, and my throat is a little sore from huffing and puffing. I think once I get more experience with using oxygen it will help also. I tend to stop too fast, only to have to start again for another 5 minutes to completely get rid of a CH. On the up side, I only got 2 last night compared to 3, and I took a nap yesterday without getting any. So, hooray for that.

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

Billie

CH.com Junior

Offline

I Love CH.com!

Posts: 62
Maryland
Gender: female

Re: Rude Awakenings
Reply #9 - Feb 29^th, 2012 at 9:18am

Las Vegas, thank you also for the information. I just saw your post after responding to Batch. The information about the oxygen is definitely helpful, as you will read above about my problems with stopping it too fast. They do not have the big tanks where I go, which is Equipped for Life. I have no idea why. I even asked if I could buy my own and bring in, and she said no and gave me a 2nd tank. I will call around to see what other places offer. I think I am getting a good price here though. It's $100 a month with free refills, and that is without insurance.

Back to top

IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!