Well...after obsessively studying my headaches and CH for around 9 months now I've come to the conclusion that I know more about it that probably most common neurologists combined.

So, I decided that I will just stop spending all my conscious time reading about it and spent the entire weekend going out and having fun  :D

Definitely my best decision yet. Had the time of my life. Like Sanna says, CH happens, live anyways! I guess just sometimes it can be difficult to realise how easy it is to let the beast to control you, even when he is just lurking somewhere around the corner.

So far all the meds but corticosteroids have failed for me, so lithium is the next step. That includes Verapamil, Topiramate and Depakote. Also kudzu. I can't really say if Verapamil would have helped because of the extreme constipation it caused in five days using a dose of 120mg even with two different laxatives. Luckily with steroids the attacks come only once or twice every day. Cold helps. Oxygen, at a rate of 10l/min with a proper CH/mask, has to be used for 20 minutes at least, then the beast comes back in a minute or two. 15l/min was a bit more efficient, I think, but I didn't have my START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE mask then (very high quality, btw) In Finland it's difficult to get hold of big tanks of oxygen with high flow rates, but I'm working on it. Anyways, yesterday a doctor with experience of treating psychiatric patients said that lithium is a very safe medication and I should absolutely not worry about using it. Also he said that considering that I'm still young, I still have time to taper off corticosteroids for the lithium to start affecting me. So that's good news too :)

Anyways, I'm also going to a vacation south somewhere(???) quite soon. We will see if it'll scare off the beast too :P

- Rosa

u go Rosa!!! excellent idea........................................have an awesome time and let us know how it was!!!!
deb
8-)

talk about taking matters into your own hands!! i love it!! and i made the very same choice!! so just like i say to a member of the team when they do well, a big "thatta girl" goes out to you rosa!!  coach bill

and that, my dear girl, is how one gives the beast the finger! [smiley=bigtiny.gif]

Good for you!!!

No question over half our battle is attitude, I love yours! Lithium has been my silver bullet for many years, hope it's as succesful with you. Enjoy the trip! ;)

Guiseppi

Have a great time, Rosa.

Who knows?  Maybe you'll leave the beast behind.

Best wishes,

George

Good for you, Rosa! :)

I do hope that the beast will stay away when your holiday begins!It's important to be prepared just in case, but otherwise, just relax.

Let me know if you'll be in Middle Finland in some point, we could meet up. :)

Sanna

Great news, Rosa!!  I agree with what has been said - attitude is a big part of the battle (even though attitude can't beat the beast back itself, but plays a huge part in how we deal with it), and just going out and living can bring such a joy to the soul and help make the hard times a little less hard!!

One question I have for you is how long have you been on steroids and what type/dose?  Make sure when you come off steroids that your doctor definitely weans them - not weaning them down can result in very serious health problems, including adrenal failure.  And long-term steroids can have their negative effects.  Although I know how great it is when steroids work!!

Keep having fun - I'm really glad you went out and had a great time!!

Hugz,
Carrie :)

Thanks everyone for your great attitude too  ;)

I really like to think of myself as a positive personality and even find good things about CH in general. So far I've found:

1) For the first time in my life I'm capable of a very healthy lifestyle. I'm eating a lot of fruit and following a vegetarian diet to control the beast and constipation caused by Verapamil. I've lost a lot of weight and look better than in a long while.

2) I've basically totally stopped drinking any alcohol. Most I do is take one sip.

3) Even though the CH for me is really painful, it lasts only an hour at a time and comes only twice every day. Life outside that is completely normal if you can just stop worrying about the next hit and meds and so on :P

4) There is a very strong motivation to maintaining a regular sleeping rhythm...well, that can be annoying sometimes, but mostly I think it's a good thing.

Anyways, that's my short list :)

And Carrie, I've been on Prednisolon at 10mg twice a day for two months now continously. I've been on and off it periodically for around half a year. I would want to discontinue it, mostly because I don't really know how much it really helps with the hits anymore, and of course because of the side effects. It seems like it has suppressed my natural steroid production already, because I get hit every day twice...or the beast just has gotten stronger? 30mg/day used to make me completely pain free. Without the Prednisolon I do and did get the early morning 4 am hits and basically looked like a zombie on crack after a while :P, so it has at least made those go away. I'm pretty sure that long term sleep deprivation is pretty unhealthy too ;) The couple of times I've forgotten to take the 10mg of Prednisolon have caused some quite heavy constant shadowing in a matter of hours, which I think is another clue to my natural steroid production being suppressed, though.

However, I've asked two different doctors, including my neuro, and they both think that since I'm still young I have plenty of time to try out Verapamil properly before there should be any risk of long term damage caused by corticosteroids, so they should be discontinued only after I find proper prophylaxis from hopefully Verapamil now. In their opinion, corticosteroids have a far worse reputation than they really deserve, and long term damage is usually caused only after using years of high doses. E.g. one of my friends, same age as me, used Prednisolon for two years at a dose of 40-80mg/day and had no long term problems from it whatsoever.

Pain free days to everyone! :)

- Rosa

Rosa,

I'm glad you are doing well!  I trust what your doctors are saying, but let me just tell you a little story about me and steroids.  I did receive them in IV form a few times in the hospital and outpatient infusions, but I mainly took steroid tapers every 4 weeks or so - the highest dose I ever started at was 80mg and decreased over 2 weeks until off, but most of the time I think I took 40mg tapers over a 1 week period.  In August of 2004, when I was 23 years old, I was diagnosed with a rare bone disease called Avascular Necrosis of both knees - a condition largely associated with steroid use.

I'm not saying your dose and duration are going to lead to something like AVN - like I said, I received a LOT of steroids over about a 3 year period, and there may be other factors about my biology that predisposed me to having this condition.  I had surgery for it in June of 2005, and I'm doing much better now - but the AVN will mean that I will eventually need knee replacements.  We're hoping we can put that off for as long as absolutely possible!  Unfortunately, I'm also at risk of getting AVN in other joints - so even though the steroids were a huge help for me, I can no longer take them.  I have taken one further taper for an autoimmune flare up where I was unable to walk or move my hands at all, but that's the only time I've taken them in a taper ever since the AVN diagnosis.

I know this is a rare complication, but I just wanted to say that I am young, thought nothing of the steroids because they helped the headaches, and then developed this rare bone condition that has caused me a lot of problems, although at present is pretty stable.

My word is just be careful - and I understand wanting to wait until you find a good prevent, but probably the sooner you wean off the steroids, the better in the long run!  Hard to even think about when they help as much as they do!  I'm glad your doctors are both aware and following you, though!  That's who you ultimately have to listen to and make these decisions with!

Hugz,
Carrie :)