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        Cluster Headache Help and Support >> Getting to Know Ya >> Brand New and Currently With Demon
        
(Message started by: TicketFrog on Jan 8^th, 2008, 4:29pm)

Title: Brand New and Currently With Demon
Post by TicketFrog on Jan 8^th, 2008, 4:29pm

Wow...I am so glad I have found this site. I have been a long time sufferer of "migraine" headaches. This is what my neuro has been calling them. She has had me on Topo 100 and Nortrip 50 with some Maxalt when things got rough. I would go through some bad times and then be fine...then go through the cycle all over again. She even hospitalized me once for two days for a nice drip and O2 treatment. At first she thought they were just Rebounds from Excedrin Migrain because I was chewing those like candy, but then diagnosed me as Chronic Migrain.

Things would be fine for 3 to 6 months and then BAM...another series of headaches starting with an EARTH SHATTERING one in the middle of the night that would send me into fits. They would last for about 2 or three days (not as bad as the first) and then go away for about 3 days and be back. This cycle would last about 2 to 4 weeks...then vanish for the 6 months.

My wife NEVER gets headaches...and just does not understands. It is hard for her to feel sympathy. I have a 5 year old son and an 18 month as well and I don't want them to see me like this so I have to fake it. It takes its toll. I have no one to talk to about this. My mom suffers from Migraines, but that is a whole other can of worms.

I have gotten to the point where I don't sleep when I know the cycle is starting...shadowing I think you all call it. Last night I had my first bout with the "demon". It woke me up at midnight and it was a killer...I was out of Maxalt (of course) so I was chewing Hydocodone...(which I had left over from the flu).

I decided enough was enough. I did a search today on the Internet and found you all. I looked through the symptoms and it was exactly what I am going through. I immediately registered, bookmarked and posted this story. I think I am going to make this a home here. I hope you all accept me.

TicketFrog (David)
4 year Clusterhead

Title: Re: Brand New and Currently With Demon
Post by Guiseppi on Jan 8^th, 2008, 5:05pm

Accept you? Even if we don't like you, (not likely) you're family now so we're stuck with you. To do battle with this stuff you need to attack it with a two pronged approach.

1: A good preventative. A medication you take while in cycle, that is getting headaches. You are using topomax?? A well known preventative, many call it dopeymax due to its side effects! Other popular preventatives are verapamil and lithium.

2: A Good abortive strategy. DUMP THE VICODAIN/HYDROCODONE, and any other pain meds, especially the otc stuff. They don't touch cluster pain, and worse, cause far more problems for an already beat up body.

Your first line abortive should be oxygen, at a high flow rate, using a 'Non ReBreather" mask. I can abort in less then 10 minutes using just 02. You need a home set up, driving to the hospital doesn't work as you have to catch the pain before it really sets in. Other great abortives are imitrex injectables and imitrex nasal sprays, pills are pretty much useless as the pain level tends to ramp up too fast.

Now what? You need to find either a neuro who understands CH or a doctor who will listen to you. Until you do that there are a few tricks you can use. Try slamming an energy drink at the first hint of a hit. One containing both caffeine and taurine, monster, rock-star etc. many can abort using just that. Strong coffee helps in a pinch.

Try taking melatonin at bed time. It's an over the counter supplement available at health food and vitamin stores. Try 12 mg a night just before you go to bed, many can avoid the nite time hits that way.

For now start reading like crazy, you have much educating of yourself and your doctor. I'd feel more comfortable, if it was me, getting to a good neuro to make sure of the diagnosis. There are hundreds of headache types and different meds for each!!! Just best to be sure on the diagnosis!!!

Welcome, one way or the other I hope you find relief soon.

Guiseppi

Title: Re: Brand New and Currently With Demon
Post by Bob_Johnson on Jan 9^th, 2008, 8:25am

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.

======================
1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Title: Re: Brand New and Currently With Demon
Post by TicketFrog on Jan 9^th, 2008, 10:22am

I have a decent Neuro...she just diagnosed me with Chronic Migraines and put me on the Topo, Nortipto and Maxalt.

I have scheduled an appointment with her for next week to talk to her about Clusters and redoing our plan of attack.

Thank you all for the wealth of information. I have a lot of ammunition with me.

I did have another bad visit last night but tried the water water water method and some Full Throttle...she (I call mine a she - hope no one takes offense) did not stay around as long.

Title: Re: Brand New and Currently With Demon
Post by DennisM1045 on Jan 9^th, 2008, 1:05pm

Hi David,

Welcome to the family. I'm sorry to hear we're related though.

If your Neuro didn't recognize CH then you need to clue her in. Either she's good and you don't have CH or she's uneducated about CH and didn't recognize the signs. If the latter then see if she's willing to learn. Print the info from Bob and bring it with you. If not, then find another Neuro. Lots of us have to search for a while to find one that can really help.

I'm episodic too. Oxygen 100% @ 15lpm with a non-rebreather mask works well for me. I back that up with energy drinks and an occasional Imitrex shot for when things get really bad.

There are loads of helpful people here. Guiseppi and Bob have given you enough to get started. Take the cluster quiz linked on the left and read through all the links and stickied threads.

I hope the collective knowledge around here can help you get some PF time.

-Dennis-

Title: Re: Brand New and Currently With Demon
Post by TicketFrog on Jan 9^th, 2008, 2:51pm

Let me ask you all...can you have migraines at first and then they turn into Clusters? or can you have both?

I would hate to think my neuro is just incompetent (I know some Doctors are). Maybe my symptoms have changed since the first time I saw her and I have just not clued her in. A lot of things will be revealed next Friday...my appointment.

Title: Re: Brand New and Currently With Demon
Post by Guiseppi on Jan 9^th, 2008, 3:26pm

Sadly the answer is yes. :( We have people on the board who suffer with combo headaches, migrains and CH and other combinations. Needless to say the diagnosis is a bitch since the symptoms overlap. That's where a headache diary can be really helpful. Even a well educated, very competent doctor will have their hands full with combo headaches. The diagnosis will be in the details, good luck friend.

Guiseppi

Title: Re: Brand New and Currently With Demon
Post by tessistired on Jan 10^th, 2008, 9:56am

Hi David and welcome to the family!!

I have been a clusterhead for about 7 years now...chronic for the last 3 and episodic b4 that. And I am one of those "lucky" people that get both...chronic migraine and chronic cluster headaches. The medications I currently take are Topamax, Lithium and Verapamil and I also recently started taking melatonin at night which has helped some for my night time hits. My neuro is weening me off of the Topamax tho which Im kinda nervous about cause it works wonders for my chronic migraines. My ch's are a different story...that has been the battle. But migraines and ch's are two totally different headaches...different pain. So if I happen to be getting a migrain in the midst of my ch cycle I can tell the difference.

There is so much info here for you to read up on tho im sure you already know tho and the people here I cannot stress enough are just absolutely wonderful!! We really are family and support and help eachother as much as possible. So share as much as you can and we will do what we can for you!

WISHES FOR PAIN FREE DAYS AND NIGHTS AND MANY BLESSINGS TO YOU AND YOURS

TESS

Title: Re: Brand New and Currently With Demon
Post by rocketman3104 on Jan 11^th, 2008, 12:10pm

Hi David, Welcome to the family. Glad you found the site. There are alot of great people here with alot of good information.

Question for ya: Can you describe what type of pain you have? Is it one sided, dull, sharp, ect. Where is the pain located? (front,back,one side, both sides) and does it change locations? This is a good indicator of what types of headaches your having.

I use Oxygen and Imitrex to do battle. The O2 can abort most of mine, but I use the imitrex when I'm starting to lose the fight. Narcotics won't touch my h/e. Plus my line of work I can't take alot of medicines that might work for me. So I do pretty good with just the O2 and Imitrex.

Read,Read,Read....ect. Try some of the different treatments. I never thought that a Energy Drink could help until I read it here. Tried it and found it could help abort one if I caught it in time. So don't be afraid to try other treatments. Once again Welcome.

Have your wife read some of the posts and check out supporters corner. If she knows more of what we go through mabey it will help her understand better?

Once again welcome and glad you found us.