Hi everyone, Well dont know where to start but I am a 48 yr old female from Green Bay Wi.
I have suffered migraines for about 20 years. I have been going through a different type of pain (much worse) the last 2 1/2 months and went through all the tests ( CT scans etc), and even went to a sinus specialist because of the sinus problems at onset of headache.
I was diagnosed with CH about 1 week ago and am now on predisone and have appt with neurologist soon.
I feel like crap from med though with muscle ache and weakness and wondering if this is normal.

Presnisone is a transitional drug used to stop the hits until some other preventative can reach a theraputic level.
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You need an abortive. Caffeine,02, Imitrex are the big ones.
Glad you made it here. Sorry you have to be here.
all the best
thebb
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oh...Go Packers :D

Suggest you confirm that the neurologist has experience with complex headache disorders. We have had too much experience with neuros who are not at all helpful for want of training and experience. (If you need help in locating a specialist, get back.)

Suggest you start learning about your new companion!
Buttons on the left are full of links/material; start with the OUCH site.

Then one of these books:

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

These links will introduce you to the current thinking in treatments. And, if your new doc is not using these approaches, might signal how current his thinking is.

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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Cindy,

I’m a newbie too although I do have a bit of experience with taming the Beast.  Only difference is that I did it alone and that wasn’t fun.  These people are great and they really know what they’re talking about.  I’ve already gotten some wonderful advice and even though I’m sorry you’re here, I’m glad you found us.  

It sucks you’re here (it sucks we’re all here) and finding the right method for you won’t be fun and you must be patient.  What may work for me may not work for you and as much as we are similar we are all different.  Everyone here is very supportive and I must admit… Now that I see CH as a someone (the beast), it changed my attitude.

Like what everyone is saying up here… Sit down and start reading.  There’s a lot of great info up here.

Never tried Predisone… My bullet is Verapamil (400mg a day) and Zomig (5mg) nasal.  Next try will be O2 and Red Bull since I’m sick of the pharmies.  We are all looking for a better way.

If the beast is waking you at night try melatonin (12-15mg) before bed.  I just tried it last night (15mg) and even though the beast still came, he was on a chain for 6-7 hours.  A decent night’s sleep is good!

PF wishes to you!

Ron

Pfffft…. (Sorry Cindy)  Go Eagles!

Cindi,

Just a note about my suggestion about melatonin.  I just found out that you should Titrat up 3mg a night every few nights till you eventually hit the 12-15mg level.

Dennis is glad I woke up this morning;-)  I did sleep well though!

PF wishes to all!

Ron

Prednisone is meant to offer some relief while building up on a preventative, such as Verapamil or Topomax. If you stop the Predisone, without a preventative in your system, you'll get hit - Hard - I know from experience - in my case I forgot my nighttime dose of Prednisone. So, I'm really hoping your Dr has something else planned, if not please talk to him about this.

In the meantime, if you have no other meds, I suggest stocking up on energy drinks - anything with caffeine and at least 1000 mg of taurine. Chug it at the first sign of a hit, it’s also great for shadows. As Ron suggested, Meletonin can help keep the beast away at night.

PF wishes,
~Kris

PS - Welcome   :)

Hi Cindi

Welcome and hope you find some relief soon.  I do the pred taper thing too for my cycles.  I take verapamil as preventative and other abortives.   Preds make my muscles weak too, particulary around my knees- joint pains,  and generally I feel like crap on it.  But.... it stopped a couple of my cycles dead in its tracks.  This time wasn't so lucky, had a couple of pf days in my last cycle on the preds but that was it.  Went on verap and I was good to go!

Good luck to you!

Kelly

You've already been given a healthy dose of great advice so I'll just say welcome, and then strongly suggest you try oxygen! read the link on the left, print out the info and try and get your doc on board. It's been a miracle abortive for many on the board, certainly one you should try. Glad you found us, hope we can help you!

Guiseppi

hello welcome but sorry you have to be here.
get aquainted with high flow 100% oxygen it is my best friend besides energy drinks.

Karl

33 yr old male from orlando, Fl. Here it goes. Only headache I ever had was from hangovers. Last wednesday, I go to the Dr. with a sore thoat and a headache. By the end of the night im in the emergency room with strept and this "wild" headache. Next morning, Im gettin 3 lumbar puncturesbecause this headache wont go away. well they send me home and for 3 days, it felt like I was going insane until finally i cant take it anymore and I go banck to ER. They admit me on Monday and start shooting me full of Daloddid, which doesnt kill pain, but calms me down. Next day, neurologist comes in, gives me a CT, MRI and finally hooks me up to an oxygen tank..headache gone... Now I have Clusters? They gave me Topomax..what do I do now?

Welcome Noah, you might want to start a new thread in this same area, more people are likely to chime in. I'm no doctor but a little concerned about the rapid diagnosis. When you say the headache never stopped, were there peaks and valleys? CH rarely goes past an hour or two, it's one of its characteristics. The fact the oxygen helped so fast sure makes it sound like CH.

For now, I'd start keeping a VERY detailed headache diary. What time they start, how fast they build, how HIGH they build, (see the KIP scale on the left, a great way to "measure" pain), how long they stay at peak and how fast they go away. The diagnosis will be in the details as there are hundreds of headach types. Take the cluster quiz on the left and hang onto your answres, another great diagnostic aid for your doc. Get to a neuro who specializes in headaches, this is critical, it's a unique field of medicine.

The topomax is what we call a "preventative" medication, intended to reduce the number and intensity of your attacks. You take it daily until the doc tells you otherwise. You need an abortive medication, as even while taking topomax you're liable to get hit. Oxygen should be your first line abortive. Pure oxygen, delivered at a high flow rate, through a non re breather mask, started at the first sign of an attack should be your first line abortive.

For now start reading like a madman, this board is chock full of info on CH. If it is CH you have, this is your new second home! And please start a new thread, wit something like "new hear" so people can start helping you.

Guiseppi