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Topic: About Me (Sorry it's a long one) (Read 464 times) |
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AndieKay
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About Me (Sorry it's a long one)
« on: Jan 19th, 2007, 4:45pm » |
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Hi everyone! My name is Andrea. I just joined today.I am 19 years old and currently experiencing my third or fourth attack of headaches since 2001. I think I have been so traumatized by these headaches Ive blocked out the memories of when I had them so there's no telling what number im on.
The pain is always sharp and on the left side. It travels into my eye, temple, ear and even into my front teeth. Sometimes I almost feel a burning sensation with every throb. As I speak my eye is bloodshot and my ear is stuffy. It's a given that Im going to be woken up by a headache or deveolp one shortly after I wake up. Im usually completely fine as soon as the pain goes away.
My headaches are not chronic. When I am not going through a cycle, I rarely experience even the slightest headache. I seem to go through roughly 1-2 years of remission before the next attack starts. This is frustrating because just when I begin to think I might be in the clear for good, the pain starts up again.
I dont know what triggers the cycles to start back up, but I have noticed they flare up right after Ive gone through a downtime like a break from school or athletics when my general activity level is lower.
Ive never been diagnosed as having cluster headaches. Ive always been told migraines even though my symptoms werent exactly typical. My neurologist didnt have an answer for why I would be in the worst pain of my life for about 2 hours then all of a sudden as quickly as it hit me the pain was gone. Most people who have migraines will experience the same migraine that lingers for a few days. I on the other hand look at my headaches as a cycle of individual headaches that have pain free intervals between them.
The only medicine ive found to work is imitrex pills, and sometimes if i dont catch it at just the right time imitrex does nothing for me. I was on Pamelor as a preventative at one point during a cycle but it did nothing because I had no level built up in my system and by the time I had a level built up my cycle was done. It seems the only way a preventative would work in my case is just to take it for the rest of my life but id rather not do that.
Now if anyone is still with me after that novel i just wrote, I need some help. I go to school at the University of Tennessee which is 6 hours from my home so i have to see the school doctors which im sure wont know much about cluster headaches if my own neurologist couldnt even diagnose me. I was wondering what medication i should suggest. Should I stick with Imitrex pills since thats worked the best in the past? Ive been hearing alot about the injections and that might be better for me since the pills dont work every time probably because I cant keep them down. So should I suggest the injections? OR should I just not say anything and let the doctor make his/her own decision?
Thank you to all who have read all of my rambling! Any replies would be much appreciated!
Andrea
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LeLimey
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Re: About Me (Sorry it's a long one)
« Reply #1 on: Jan 19th, 2007, 4:55pm » |
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Hi Andrea, its nice to meet you, I'm just sorry it has to be here.
Imitrex injections are much better for CH. Pills generally don't work fast enough to be considered effective. You might also want to consider Zomig Nasal sprays as they tak about ten minutes to kick in but then have a half life of up to 12 hours as opposed to only two for imitrex.. if you have multiple hits in a day this might be a better option.
My first choice always personally is O2. Used through a non rebreather mask or a clustermasx at 15 liters per minute I can abort a hit if I get on the O2 quickly enough in as little as 5-7 minutes. The longer I take to use it the longer it takes to abort but I swear by it. You can get small portable tanks as well as larger ones incidentally.
I have a couple more questions for you before I suggest any more options.. how long do your cycles usually last and approximately how many hits do you get in a day? We're all different and we use a wide variety of meds so knowing how your cycle works is the best way to help you. Also how long do your hits generally last?(unmedicated)
I know it seems like a lot more questions but it'll help us help you and getting you some pain free time is our goal!
We'll do all we can to help I promise
Helen
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Guiseppi
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Re: About Me (Sorry it's a long one)
« Reply #2 on: Jan 19th, 2007, 5:00pm » |
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Not a rambling post at all, you're my daughters age so it breaks my heart to see you with no help so far.
First off there really are no triggers that start the cycle up. Once you are on cycle most people find alcohol and stress to be triggers for individual headaches but you'll find with everything about this disorder, no 2 people are the same!
Try to convince your doctor to prescribe oxygen. It must be used with a non re breather mask, at a high flow rate, up to 15 lpm, and started at the first sign of a headache. It aborts the najority of my headaches.
Try to get the initrex injectables. As you have realized by now, the headaches ramp up too fast for pills to be of any use. By the time the pill gets into your system you're in too much pain. Another reason why the oxygen is so useful
Then think about a preventative when you're on cycle. I use lithium, others use topomax, there are many for you to read about under the meds section, it's a lot of trial and error.
Start reading like a mad woman, you have much to learn. You will find in very short order you'll know far more then most of your doctors about CH. Do try to get a solid diagnosis from a doctor though, take the cluster quiz on your left and let your doctor know the results. Keep a headache journal also, it helps the docs in their diagnosis.
One more thing, there is no cure for this, no magic pill to make it stop. With help from this board you can manage it and kick the beasts butt! Let us know how we can help you and welcome aboard.
Guiseppi
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JeffB
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Re: About Me (Sorry it's a long one)
« Reply #3 on: Jan 19th, 2007, 6:31pm » |
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Not much to add, these guys know what they are talking about. Just read the info posted here and don't be afraid to ask questions.
Go Vols!
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RichardN
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Re: About Me (Sorry it's a long one)
« Reply #4 on: Jan 21st, 2007, 1:59am » |
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Hi Andrea and Welcome to Clusterville
Another vote for 02 here . . . I have some arterie blockage and therefore can't use Imitrex . . . so 02 is my only abortive . . . a real miracle for those of us (60-70%) it works for. Can kill the beast in minutes if used early-on in the attack.
Don't discount the "water X 3" therapy (link on left). I am absolutely convinced water therapy has helped me reduce the frequency/intensity of attacks. It takes a LOT of water.
If you have night hits, try Melatonin (OTC supplement). Most take 6-9 mg 45 min before bedtime. You can expect some grogginess . . . tis normal.
Many are having some success with kudzu supplements and there is much info here about that also.
You have much reading to do and many questions to ask . . . fire away . . . you've found the motherlode of CH information and the folks here truly know your pain.
Be Safe, PFDANs
Richard (felllow Tennessean)
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E-Double
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Re: About Me (Sorry it's a long one)
« Reply #5 on: Jan 21st, 2007, 7:10am » |
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Sorry you're in pain dear,
I had these bastards in college and had no idea what was going on. I thought it was from one too many benders.........
Anyway, given that you do not have a diagnosis yet find your attacks responsive for the most part to your "migraine" treatment then it may be that it is CH and the meds might be taking too long.....
Here is a resource for your doctors. Educate the doctors, especially the campus docs since they will certainly come across more and more of "us"
This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
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Bob_Johnson
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Re: About Me (Sorry it's a long one)
« Reply #6 on: Jan 21st, 2007, 8:33am » |
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Find a doc who understands Cluster has been a problem for many folks here. Some ideas:
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/physicians/ 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.
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Start to educate yourself. Essential if you are to be able to talk to your doc.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 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.
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Finally,
http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
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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)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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kcopelin
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Re: About Me (Sorry it's a long one)
« Reply #7 on: Jan 21st, 2007, 9:43am » |
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Hey!
Your post wasn't really that long. I have found that going into the doctors office fully loaded with information will help alot. Print the resources mentioned above, see a headache specialist if you can, if not see the medical folks at your college. Take in all your research. The progression of treatments seems to be
O2
verapamil or lithium as preventatives
prednisone for transitional time while verap or lithium builds up.
abortives such as O2, imitrex jabs or nasal
What are you studying at the university? We could sure use some med folks interested in researching CH headaches. Intrested? There's grant money available for this course of study. Of course, if your major is journalism, we would appreciate some very well researched and written articles. Or if your major is art, well, how about a rendering of the "beast".
PFDAN y'all
kathy
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Kris_in_SJ
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Re: About Me (Sorry it's a long one)
« Reply #8 on: Jan 21st, 2007, 7:50pm » |
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Helllo Andrea,
Sorry for your suffering, but certainly glad you found this site. It saved my life a number of years ago - as did the articles mentioned by E-Double and Bob.
You need to be knowledgeable when visiting your doc. Be an advocate for your own treatment and care.
1. You need an abortive for the attacks - Oxygen or Zomig or Imitrex (in nasal or injectible form). For most, these treatments work in 5-15 minutes to end an attack.
2. You need a preventative. For me, it's Verapamil, quickly ramped up to 480mg/day. Once it kicks in, the headaches decrease in intensity and frequency. Caution - it can take awhile to wean off it when your cycle is over.
3. Sometimes, a Prednisone taper will stop the headaches in their tracks until the preventative has time to work.
These treatments can be found in the links given to you. Go armed with printouts, includin the medical info given on this site.
Best of luck and welcome to the family.
Hugs,
Kris
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Mattrf
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Re: About Me (Sorry it's a long one)
« Reply #9 on: Jan 22nd, 2007, 11:51am » |
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Hi Andrea, sorry you had to find us but glad you did.
I know how great it is the first time you start reading here and have that realization that you are not nuts and that there are people that understand exactly what you are going through and how bad it really dose hurt.
There has been some great advice above, so just keep reading everything you can and take as much as you can with you to the doctor to help educate them on how to treat you.
PF wishes to you.
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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chewy
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Re: About Me (Sorry it's a long one)
« Reply #10 on: Jan 23rd, 2007, 12:52am » |
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Quote:| I dont know what triggers the cycles to start back up, but I have noticed they flare up right after Ive gone through a downtime like a break from school or athletics when my general activity level is lower |
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It is common amongst sufferers to experiance attacks when stress begins to disapate.
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Sandy_C
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Re: About Me (Sorry it's a long one)
« Reply #11 on: Jan 23rd, 2007, 12:45pm » |
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on Jan 19th, 2007, 4:45pm, AndieKay wrote:
OR should I just not say anything and let the doctor make his/her own decision?
Andrea |
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Hi Andrea, and welcome. No, your post wasn't long at all. The information you've been given above is great. Make sure you print out all of the information and take it with you to the doctors at school. And, by all means, SAY EVERYTHING! Show the doctor all of your printed information, take in a log of your headache hits, when they started, how long they last, how many per day, etc. This is invaluable information. Above all, you need to get a confirmed diagnosis, whether it's CH, or something else, because medications can help, or can harm, depending on the diagnosis.
I'm not saying that you should self-diagnose, but I am saying that you are a smart woman, who knows her own body, and knows when something is wrong. You need to find a doctor who takes you seriously, listens to you, is willing to learn from you, as well as from documented research. If it turns out you don't have CH - this is good news - trust me.
If the doctor shows any resentment because you have done some research, because you are suggesting possibilities of your affliction and possible medications that might help - if he resents this, or if he discounts your information without researching himself - find another doctor. Whatever the diagnosis turns out to be, it is vital that the doctor you are working with is working with you.
Please keep us up to date on your progress. Someone is always here, and willing to try to ahswer your questions. When I first joined this site, I was told that the only stupid question is the one you didn't ask. That has become my motto, so ask away without fear.
Sandy
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Turts
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Re: About Me (Sorry it's a long one)
« Reply #12 on: Jan 31st, 2007, 6:05pm » |
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o2 all the way.
its safe
its cheap
theres no side effects (that I am aware of- please advise if there is)
and IT WORKS (for most people anyway)
Quote:| I'm not saying that you should self-diagnose, |
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i agree, but provide the info so that they can make there own informed diagnosis.
also ask for both an abortive and a preventative med.
Sorry that you needed to google CH in the first place, but since you had too, you have found the best place to be for a clusterhead.
Turts
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'I'm very brave generally,' he went on in a low voice: 'only today I happen to have a headache.' (Lewis Carroll)
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