Hi there.
So, I'm 28 and have been having CH since my teenage years. Of course for the first 6 to 7 years I tried every allergy pill known to man and was thought to have chronic sinus infections. I always thought it was amazing that 2 actifed seemed to do the trick and that became quite addictive.

Finally was diagnosed with CH and was absolutely thrilled to read about it and not feel so crazy anymore...but who can really say they are thrilled to have CH... I guess I was just glad to not be alone.

I am in my 3rd month of my 3rd cycle since being diagnosed. They have come every 18 months or so. I really enjoy those "off years." I started this cycle mid May, came right before my birthday, happy birthday to me. This one however seems to be the worst yet.

I started off the cycle by just seeing my regular doctor and she prescribed me topamax, O2, and imitrex pills. The first part of the cycle was extremely easy to deal with. Topamax was working as a preventative. I really didn't like the side effects, I was loopy, feet kept falling asleep and awfully depressed and emotional. I decided after 2 months basically PF that I was going to quit the topamax and see if the cycle was over. Well, it wasn't for sure!! Just a day or two without the drugs and I was having HA's 2-4 times a day. I went back on the topamax immediately and the HA's continued. Seemed topamax didn't want to work the second time around. Dr. prescribed prednisone and sent me off to the neurologist.

The neurologist took me off topomax and put me on verapimal. I'm taking 80mg 3x a day. I finished the steroid and it didn't even touch the cycle...still going strong. After a week of verapimal and no changes she put me on Indocin.

It was interesting that a HA triggered while i was at the neurologists office! She got to witness my misery firsthand. She felt so bad for me she wanted to try acupuncture right then to see if it would provide relief. She got about 10 needles in (hands, feet, head, knees) and I had what i can only explain as a panic attack. I felt hot, sweaty, light headed, almost threw up and thought i was going to pass out. She removed everything and I was there about 2 hours until i finally felt sweet relief.

The doctor then also prescribed indocin, 25mg 3x a day. It has been 5 days since then and I went 1 day PF and have had 1-2 HA a day every day. Where they used to last 1 hr, now they last 40 minutes if the imitrex works, and 4 hrs if not.

I love 02, takes the pain away in minutes, but not consistent. Sometimes it works like a charm, other times not at all, and sometimes the pain will subside, i'll stop the O2 and 10 minutes later the HA is back!

So today I've decided to start the "water treatment" (wow i'm peeing every 15 minutes on the dot) and also am trying to eat msg free which is quite a feat considering i'm also a vegetarian.

any other words of advice for me??

Not so much words of advice, Trizzy, but just to say G'day and welcome home.

Cheers and beers from down under.

Hi Trizzy.   Sounds like quite the ride you been on.
    I suggest you do a bunch of reading here, It sure helped me.
  Ch is so predictable, and so unpredictable, It takes a while to see what works for you.
   I have good luck with Zomig. and Verapamil, if you run out of options, you might try that...and sometimes it takes a while for certain drugs to kick in.     Like Bob Johnson said to me though____Only try one thing at a time, or you can't tell whats working... He is very knowledgeable.
   It is very hard to hold back, when you want to be rid of the pain NOW though.  But that is soo true.
    Be sure and stay tuned with your doc. Sounds like she is up on stuff.

   Good luck, and hang in there!       lorac

This is the first cycle my husband is trying Lithium.  It seems to work for him (when he takes it).  He doesn't like the way it makes him feel, and he'd rather not take anything if he doesn't need it, so for the past 3 weeks he tries to stop taking it and the CH's come right back.  He did cut each pill in 1/2 so rather than 3 pills per day, he's really only taking 1.5 per day.  Still slight CH's sneaking through at night, but we finally got the right O2 regulator and mask and he seems to be able to stop them.

Yeah I've heard about lithium and haven't wanted to try it yet... i've heard bad, bad things about the side effects. I'm glad it's giving him some relief. I think i will only turn to it as a very last resort. Right now the dosage of verapamil has about doubled... i'll see how it does...

Hi Trizzy-
I agree with Lorac about sticking to one med at a time and giving it a chance.  I know it is difficult.  Your post reminded me of my niece with her CH's that is about your age.  I said that to say this...do not drink any alcohol, not even one drink, during your cycle.  It took a couple of people in my family awhile to figure that out.  With us, it will cause a cluster every time.  Just a tip I thought of as I read your post.  I am so sorry for the long cycle.  Read, read, read on this site.  It will help.  It takes your experience and the experience of others to get a handle on it (and I say that with my fingers crossed).  Good luck.

Welcome to the "Family" Trizzy.......can only offer what has worked for me (so far).  New cycle started just over 2 weeks ago, started on Phenergan (antihistamine) initially, however went to the Doc for backup.  He prescibed Prednisone 50ml daily for 10 days followed by a taper off over 7 days followed by Verapamil.  I have O2 on standby also.  I am currently (as I type) on my 8th day of Prednisone 50ml.  Earlier in the week I had to resort to the O2 EVERY night!  Strangley enought the last 2 nights (thurs & Fri, it's now Sat) I have been pain free.  MY cycle normaly lasts up to 4 months however since the commencement of the Prednisone it seems to be doing the trick (fingers crossed)  As far as your hit and miss witht he O2, all I can suggest is that perhaps you terminate the treatment too early.  I have found that once the pain drains away with the O2, I need to stay on the stuff for at LEAST another 10 min otherwise the CH will return, pretty much on the hour. Even managed to enjoy a glasss of wine last night  :D  Small comfort for you I know, but I sicerely hope you find something in my advice that gives you some lasting relief.  We all feel your pain...beat of luck commrade   :'(

Thanks Aussie!
I'm so happy for you to be PF! And i'm majorly jealous about the glass of wine  ;). Have one for me!

I am also jealous about the wine!

:(

Trizzy wrote on Aug 18^th, 2009 at 7:23pm:

verapimal. I'm taking 80mg 3x a day. I finished the steroid and it didn't even touch the cycle...still going strong. After a week of verapimal and no changes

240mg verapamil a day can be insufficient as a preventative for many and can take a longer time than a week to build up gradually to effective preventive levels in the system to give it a chance.

You mentioned the doctor suggesting to up the verap, but also a concern about blood pressure.  How has that worked out, has the doc checked it again or gone straight to the Indocin, which may not be as effective in the long run?

240 verap a day would not help me, either.  Imitrex in pill form can also can be a less appropriate abortive med when it comes to CH.

I'm 49, male, about 31 years of CH, episodic. I've been using lithium as my primary prevent for over 15 years. I'm in law enforcement so I was really limited as to meds I could take and still work. At 1200 mg a day lithium blocks 70-80% of my attacks. The only side effects I've experienced are slight lethargy, coffee will compensate for that, and you pee a lot the first few days.

Don't let rumors of horrible side effects be the only thing that deters you from trying  a treatment. All meds have some potential for side effects. If the verapamil dosing can't go up due to blood pressure issues, I'd strongly encourage giving lithium a try. Been a silver bullet for me.

Joe

Well, to follow up I have gone up on the verapamil... I am at 120mg in the morning, 120mg mid day, and 240mg at night. I have swollen fat ankles but the # of HA has severely decreased. I didn't stay on indocin b/c it didn't seem to make a difference. The Verapamil seems to be working at this high dosage. My major side affects are tired, lethargic, and swollen ankles. I guess you weigh out the good and the bad!

I can empathize with the swollen ankles...the word cow-ankles comes to mind...  ::)

I am on 360mg of verapamil per day and given my meager size that is as high as my doc will go.  Luckily that along with supplements/herbals is keeping the beast in more chains than he's been in with me for awhile.

Welcome to the board Trizzy  :)