Hello all

Well, I am almost 2 months into my first CH episode. Around Thursday of last week the severity and frequency of them has gone down somewhat. Actually was able to get some sleep!! I was very happy and excited hoping the beast was slowly going away. That is until about Tuesday of this week.

I started back to work on Monday thinking I would have a grip on these cursed things, but have been only able to make it about half a day since doing a full day Monday.  Now the dizziness, confusion, nauseated, sometimes severe memory loss has returned after each attack. Nothing has changed in this time. No stress at work, I love my job! I write this from work afraid I will not make it through the day. Very strange this damn beast is. I hate him.

My question is to those who suffer from episodic CH, do they typically completely go away suddenly or do they start to dissipate over time? A couple weeks ago I have started this recommend D3 vitamin regiment, hopefully that will do the trick in time. The only medication I am currently taking is Verapamil 180mgs every day. Currently awaiting to see my Nuero early next month.

Thanks

When Cluster is first presenting itself it's not unusual for the vaious symptoms/aspects of attacks to change. It may take from weeks to a year before a fairly stable picture emerges. Not an issue of concern although it keeps life a bit unstable.

Your doc may increase the Veap dose. Not uncommon to work up to 700-900mg range to obtain full benefit.

The unmentioned survival skill with Cluster: patience.

The end of cycle behaviour varies between people and even between cycles. Some common endings include them just fading away in frequency, a sudden stop and sometimes ending with a high Kipp CH.

You'll need to learn what the pattern is for you and be aware that it might change between cycles.

Thanks guys. Oh how my life has become unstable. I want it back!

Jamz wrote on Apr 25^th, 2013 at 4:29pm:

Oh how my life has become unstable. I want it back!

You need to do a few things.

First off work with your doctors, use the forums, etc. to do whatever you need to do to get your CHs under control.

During your cycle, live life between the hits, dwelling on the pain free time and not the CHs.

Then once your cycle is over, enjoy life but at the same time be prepared for the next one, whenever it is and hoping it's a long, long time away.

I would add to Mike's excellent reply that the time when you're off cycle is also when to think about getting a good oxygen system in place for the next hits. Whether that's a prescription or a welder's tank.

It is also helpful to have some strategies for breakthrough hits. In addition to the O2 (see tips on the left of the message board), talk to your neuro about Imitrix injections (they now come in smaller doses and your doctor can advocate with the insurance company for a larger supply), and since you are on such a low dose of the Verapamil, if you are healthy, you might try the energy drinks with Taurine (I use RockStar Recovery). 

When my cycles begin to ease, they slowly taper but they have changed over the course of time.  Like others have said, patience is needed, and a sense of humor helps.  Live life between hits.  I remind myself, "This will pass," because they always do. 

Good luck and welcome to the club! ::)

Since no one else mentioned Melatonin, I thought I should.

Melatonin is a good preventative, mainly for ECH with nocturnal hit. It can make attacks less frequent and painful and sometimes even break a cycle.

Not everybody will benefit from it, but those who do get one of the safest prophylactics with little or no side effects. Also, it's sold OTC and it's very cheep.

I got the best results with 5mg of regulars melatonin + 2mg of prolonged release melatonin. Some people react to as little as 2mg.

Best of luck! I'm in my first round too. Get the O2 high flow setup. It really helps me.

Hi Jamz,
Having suffered from episodic CH, "Spring & Autumn" for the
past 43yrs they normally just stop at the end of the season.
I'm a great believer that our biological clock has a lot to answer
for. Check out  my thread it might be of some help to you.
Hoppy.