Hi,

My name is James. I am wylde's life partner and carer and I am completely new to the world CHs.

She has only recently been diagnosed and suddenly this week they have come thick and fast!

Her new neurologist put her on Verapamil but after three days she was rushed into hospital with 'heart-attack'-like symptoms. Emergency doctor said "stop taking them".

Now neurologist has prescribed lithium and we're getting an O2 tank in the home.

Reading this site is very interesting but I don't understand a lot of the slang.

What's "Trex injections", "Maxalt dissolvables", "deep in cycle", "out of cycle", "while you are in the ring", "Prednisone for about a 10-day taper", "steriod taper to lithium", "been taking Batch's PH combination of supplements and lemonade", "ow kip level" and so on.

Any help and advice for a newbie carer would be most appreciated.

Warmest regards
James

James Fortune wrote on Jun 16^th, 2011 at 5:01pm:

Hi, My name is James. I am wylde's life partner and carer and I am completely new to the world CHs. She has only recently been diagnosed and suddenly this week they have come thick and fast! Her new neurologist put her on Verapamil but after three days she was rushed into hospital with 'heart-attack'-like symptoms. Emergency doctor said "stop taking them". Now neurologist has prescribed lithium and we're getting an O2 tank in the home. Reading this site is very interesting but I don't understand a lot of the slang. What's "Trex injections",: Imitrex Injecables. Imitrex is a powerful vasoconstrictor that relieves both migrain and cluster attacks. It is available in injectable, nasal spray and pill. The pill version tends to work too slow for CH'er. "Maxalt dissolvables",: Maxalt is a medication used for CH, disolved under the tongue so it goes to work faster then a med you take oraly. "deep in cycle", "out of cycle", "while you are in the ring",: All 3 refer to episodic vs. chronic sufferers. There are 2 types of CH'ers, chronic, who constantly experience attacks, and episodics, like myself, who typically have 3 month cycles followed by a 3-18 month break. In cycle means I'm getting headaches, out of cycle I'm a free man. Deep in cycle tends to refer to the higher point of the cycle when the attacks are the most frequent and the most intense. These are all very general statements as cycle lengths vary, and you can switch from episodic to chronic or chronic to episodic. "Prednisone for about a 10-day taper", "steriod taper to lithium", : Prednisone is a powerful steroid which will block up to 100% of the attacks for most people. It shouldn't be taken for long periods of time as it wreaks havoc on the body. Most prevents, lithium verapamil etc., take 10-14 days to really become effective. Many, like myself, will go on a short burst prednisone taper, 80 mg a day, to 70 mg a day to 60 mg etc., tapering off over a 2 week period to give us a break while the prevent kicks in. "been taking Batch's PH combination of supplements and lemonade",: Under the meds section read the post "123 pain free days and I think I know why". Batch is heavy into research on what causes cycles and attacks, and stumbled on a vitamin and mineral regimen that seems to be helping a lot of people. All over the counter and cheap, definitely worth exploring. "ow kip level" and so on.: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Click on this link, a deceased member of our board came up with this scale, named after him now, to rate the pain of an attack. Just gives a way to explain where you are in an attack.Any help and advice for a newbie carer would be most appreciated. Warmest regards James

Welcome to the board, bless your heart for being a supporter. read like crazy, educate yourself, ask questions and become your partners best advocate.

Joe

Imitrex is called Imigran in the UK.

Don

Edited for spelling...

Hi James!!!  I'm Jen and I'm a supporter to my hubby.  Joe and Don already filled you in on the slang.

Sorry to hear about the reaction to the Verapamil.  Hopefully she will get some relief with the Lithium and the O2.

Hang around and read, ask questions or vent if you need to.