6 days of prednisone and no luck. I received my new non-rethreathable mask (thanks to CH.com), and the mask works great, but still had HA during the night. I filled the Sumavel, but didn't use it yet(probably be using it tonight). The "Monster" helps beat down the Beast during the day, but nothing is permanent. My wife said I yell alot in my sleep in pain and once fell out of bed. She's going to learn how to give me the oxygen to help, since I'm such a heavy sleeper. I don't know how you all have done it so long; I'm adjusting, and appreciate all your support and this site. I also hope the Topamax does something to help in the future.

What dose of prednisone did you start at?

I don't believe I've ever heard of any clusterhead thrashing in pain while asleep - that's why it sounds so odd that your wife would have to administer the O2. I would think you'd be doing that yourself because the intense pain would wake you up. Mind you, O2 doesn't KEEP the attacks away, it only aborts the current attack.

What kind of preventative regimen are you on? It could be that topomax just doesn't work very well for you. Have you tried verapamil, lithium, or a combination of both?

Bill,

I will often thrash and moan in my sleep as a hit comes on.  It usually doesn't wake me till at least a K7.  Linda will usually wake me when that happens so i can get to the O2 early enough to kick it to the curb.

Hey Mike,

Sorry you're having a rough time…  but it sure sounds like you're making it harder on yourself by expecting the next medication you take to be a silver bullet that makes the beast go away for ever…  Silver bullets like that flat out do not exist when it comes to cluster headaches…

A week to 10-day prednisone taper should have provided a marked reduction in the frequency and intensity of your attacks.  Many of us found it to be a Godsend as it stopped the attacks for most of the taper and for a very rare few, it stopped their cycle completely… 

Unfortunately for most of us, when the prednisone taper ended, the beast returned…  and too many of us didn't realize we needed that week to 10 days as a transition period to ramp up on a preventative…  What was the prednisone dosage you took?

Oxygen therapy is the closest thing to a silver bullet we have if the flow rate is high enough to support hyperventilation, we start it as soon as we realize an attack is approaching or as fast as possible after an attack starts, and we don't have a comorbid condition that lowers our arterial pH – too much acid.  (Any condition that lowers arterial pH may tend to make the frequency and intensity of cluster headaches higher during the day and more frequent during sleep.)

However, as fantastic and effective as oxygen therapy can be in stopping the pain of a cluster headache very rapidly, it is still only an abortive so will do little to prevent the next attack.

The triptan family of abortives like imitrex (sumatriptan succinate), zomig (zolmitriptan), or maxalt (rizatriptan) tend to work rapidly to abort our attacks when administered by subcutaneous injection, a little slower as a nasal spray, and slower yet in pill form…  As good as they are, they're still abortives.

Even folks who take high enough daily verapamil dosages to cause arrhythmias or slow their hearts…  still have cluster headaches…  so even verapamil isn't a sliver bullet…

In short, there are no silver bullets available today as a prescribed medication… 

That leaves working with your physician to come up with a plan to evaluate different combinations of preventatives and abortives with the goal of coming up with one that provides maximum relief without too many side effects…

In the mean time, taking calcium citrate tablets with vitamin D, magnesium and zinc as well as drinking lemonade may help if your arterial pH is low. 

I use only oxygen therapy and with the exception of an occasional snort of triptan nasal spray during air travel, I take no other abortives or preventatives.  This works for me and I have an excellent quality of life as I spend most of the time in a low cycle of 3 to 4 attacks a week.

I also found that taking four of the mineral supplement tablets each day and drinking one or two glasses of fresh lemonade with lunch and dinner when I go into high cycle of two or more attacks a day/night, tends to push me back into a low cycle.  I also shift my diet away from red meat to fish and chicken.  I up the amount of green veggies too.

Take care,

V/R, Batch

All,

Thanks for the replies. I am a heavy sleeper. So, I do wake up eventually from the pain, but very groggy, and often fall right back to sleep (I was always like that). I am taking Topamax, only in my second week now. I have sumavel injection, but didn't take the first dose yet. I did a 6 day prednisone taper, 24 mg the first day, down to 4 mg the 6th day. No other meds. Keep in mind, I was just diagnosed, so I only had one meeting with the doc, and still need to figure out what works. Given my headache is getting worse in the morning, I will follow up with him, as it's affecting my life more now. the headache seems to be pushing later, meaning, starting later at night and lasting later into the morning. Also, my head just feels so "big". The O2 definitely helps at night, but again, only for a while. I'll just go back to him, and see what the next step is.

Next time you talk to your doc, you might want to suggest that a "normal" prednisone taper for us clusterheads (assuming you're an average sized male homo sapiens) would start around 60-80 mg. It's normally all taken at once, in the morning just after waking up as it simulates the blast of adrenaline that's shot out by your body. Tapers down usually by 10 mg per day. My doc always had me stay at 80 for three days, then start the taper.

Personally i hate the side effects of Prtesnidone and i also didnt have good luck with it.I changed to Verapamil and after about 4 days i never had one CH.Then about two weeks after taking it i thought my CH'S were gone so i stopped the Verapamil and guess what three days later they were back!!!! Went back on it and there GONE!!!!!

VERAPAMIL YOU ARE MY BEST FRIEND!!!!!!!! ;D

As Brew suggests, the prednisone dosage that your doc recommends is unlikely to make any impact.

That being the case you may also want to make sure that your other prevents and dosages are correct. Topamax needs to be tapered up by 25 mg every 5-7 days up to the dosage your doc has recommended.

One other note: The level of prednisone at which you started (between 20 and 30mg) is usually the level where I started getting hit again if I hadn't started a concurrent preventative (like verapamil, lithium, or both).