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Topic: New here..... (Read 275 times) |
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mom2allyson0526
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New here.....
« on: Sep 22nd, 2007, 11:23am » |
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I've actually posted here before but it was several years back. My name is Becca and I've been dealing with severe headaches since I was around 10. My parents always assumed they were related to my allergies, which are severe. At 19 I was at college and found myself hit with a severe headache that made the left side of my face hurt, my eye swell and water, and my sinuses feel like a brick had been stuffed into the left side. A doctor at the campus health center diagnosed me with cluster headaches. I've had them on and off since then. As soon as I get that brick in the sinus feeling my first thought is "Oh no, here it comes!"
Over the past month things have become more complicated because my headaches seem to be occuring without a break. The thing is I think I'm having plain vanilla migraines along with cluster headaches. I'm not sure such a thing is possible, though. I'm being refered to a neurologist by my primary care physician. My husband and I are hoping it will be soon because I'm totally, absolutely miserable. The frequency and intensity of my current headaches are what lead me back here. Right now when I get the worst headaches I would probably shoot myself if you handed me a gun.
I'm looking forward to learning more about cluster headaches and finding out ways to finally get pain free for longer than an afternoon!
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DennisM1045
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One wave at a time!
  
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Re: New here.....
« Reply #1 on: Sep 22nd, 2007, 3:48pm » |
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Hi Allyson's Mom! Welcome back. I guess you saw that we left the light on for ya.
My CH triggers migraines for me too so I can assure you that it is more than possible. I get to enjoy them long after the CH has left. I hope you get to the Neurologist soon. In the mean time there are things you can do.
Energy drinks work for some. Pick up whatever is cheapest at the store and slam one at the first sign of pain.
Ice on the head or neck works too.
Don't over medicate with over the counter meds. They really don't help and can result in rebound headaches.
If your hits wake you up at night you could try Melatonin. That's an over the counter supplement that can help you get some sleep and supress some of the hits. Read the threads in the meds section before you start that though.
Exercise helps for some. However it is a trigger for me.
When you aren't plagued by a CH, make sure you drink lots of water. Read the tip on the left "Water X 3".
Make good use of the time between now and your appointment with the Neurologist. Educate yourself by reading everything here and on www.OUCH-US.org. You will be your best advocate but that is only possible if you educate yourself.
Once you get to see him/her work out both a preventive and abortive approach. Preventive meds work to reduce the severity of your clusters and abortives work to eleviate the pain quickly (ok quicker).
For abortives I use 100% Oxygen at 15lpr using a non-rebreather mask. This is effective for a lot of people. The trick is getting on it quick!
When that fails I use Imitrex Injections. I've never been let down yet.
There are lots of preventive options out there to. I haven't found my magic formula yet but I'm not out of options either 
I hope you get a break soon. Again, welcome back...
-Dennis-
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| « Last Edit: Sep 22nd, 2007, 3:49pm by DennisM1045 » |
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Guiseppi
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Re: New here.....
« Reply #2 on: Sep 22nd, 2007, 10:39pm » |
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Welcome mom....like Dennis said,,,a dual diagnosis happens...we have several on the board. Couple of suggestions.Start a headache journal if you haven't already. When the headaches come, when they start, how fast they build, use the kip scale to describe how high they build, how long the peak lasts and how long they take to leave. These are really helpful in diagnosis.
Read like crazy and be prepared to know more then your neuro. If you sit back on your haunches and hope the doc will take care of you, you're taking a big chance. Most docs receive very little training in headaches.
When you get to the neuro, demand oxygen. Proven effective for many, it's cheap, safe, no nasty drug side affects. Welcome to the board, hoping you find relief soon.
Guiseppi
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kcopelin
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good grief
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Re: New here.....
« Reply #3 on: Sep 22nd, 2007, 10:58pm » |
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I have a three ring binder that I keep updated with printed info from this site....for instance, they were balking at the flow rate for O2-lo and behold there was info here. I even printed the survey results and the medication chart-with my responses.
Good luck, and I second the melatonin tip. I am sorry you're having to deal with miraines and CHs.
Wishing you PFDAN,
kathy
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Bob_Johnson
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Re: New here.....
« Reply #4 on: Sep 23rd, 2007, 6:48am » |
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Clearly, until you have a good diagnosis, we can offer little but support. Saying that, I hope the neurologist is skilled in headache issues. We have had too many reports of neurologists who lack skill/experience/interest in treating complex headache issues.
If there is any question about this doc, call and ask some pointed questions before you keep the initial appointment. If you don't feel confident in this referral, consider:
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.
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Bob Johnson
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Rosybabe
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"Too much of a good thing can be wonderful!!
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Re: New here.....
« Reply #5 on: Sep 23rd, 2007, 7:10pm » |
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Welcome back Becca!!
There are new meds to try and lots of info to get your hands on, here and in O.U.C.H.
Hope this stime you hang with us longer.
The guys already gave you good information.
Maybe you will find the cocktail of meds that will work for you.
Wsihing you lots and lots of pain free time!!
Rosy.
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