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Topic: New Member-You Gave Me Hope t (Read 3926 times) |
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Rumeke
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New Member-You Gave Me Hope t
« on: Dec 29th, 2007, 4:37pm » |
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Hi to everyone! I found this site after my 2nd attack at 3a this morning and you got me through the morning!
I have had CH for about 3 years but they were very intermittent and I would go months w/o an episode so I could deal with it! A visit to my family Dr sent me for a CAT scan and off to an ENT to correct a badly deviated septum on the side of the pain. The ENT is the one that told me I had CH or Schluter's Neuralgia(?). He prescribed antihistamines and a cortisone nasal spray to use at night until surgery which he said would at least help me get more O2 and help me 'drain' better during an attack. Well , I put off surgery for almost 2 years until the CH came back with a vengeance but still only at night and had the surgery early this year (2007). I can at least breathe now, my nose does drain better at the end of my attack! The ENT advised I now go to a Neurologist.
I finally saw my 1st Neurologist yesterday and was not impressed. He did give me a good exam, said yep clusters, strange since I was a 60 year old woman, wrote 2 prescriptions and said he'd see me in a month. Every question I asked him I received the same response...I really don't know. Sooo I have found the name of a local Dr here that is on the LIST and will call Monday for the 1st appointment..not going back to the one I saw yesterday!
My headaches are only at night...start about 2 hrs after bed and then every 2 hrs each time I go back to sleep. I've gotten so after the 2nd one..I just stay up because I'm too afraid to have another one! They get worse as the night goes on so by the 3rd one I am beaten and praying to the gods!
I did read this am about pounding the pavement at the start so when I did finally go back to bed late this am and was awakened AGAIN..I hit our driveway walking hard and fast and breathing in all the cold air I could. It helped so much...actually stopped the attack! It was a little hard walking with my eye's mostly closed since it was daylight but I didn't run into anything! I spend my attacks outside anyway since the cold feels sooo good, have even found drinking ice cold water can help for some reason.
This glorious site gave me such strength to know I was not alone!! I have been in a 10 day cycle with at least 3 attacks at night and sometimes a whole week w/o a CH for which I am thankful. But I am so tired and depressed that I have begun to cry(can you say sob!) when an attack starts...definitely does NOT help the pain!
So THANK YOU AGAIN!!! (And excuse my rambling!)
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txbeck
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Re: New Member-You Gave Me Hope t
« Reply #1 on: Dec 29th, 2007, 4:59pm » |
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Go out TODAY and get some Melatonin to take at bedtime tonight. It's OTC and may delay or reduce the nighttime hits so you get some rest and build up strength to fight the beast while you educate the doctors. If you have a doc who at least knows what CH is you ahead of most newcomers.
Print out the info about oxygen and anything from this site and ouch-us.org and take it to your doc. Beg for oxygen if necessary, but it's safe and really works to abort most CHs. Also work with your doc to find a preventative that works for you. I like Topamax (66 yo female here).
Isn't it wonderful to discover you are not alone?
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| « Last Edit: Dec 29th, 2007, 5:05pm by txbeck » |
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Becky
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Rumeke
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Re: New Member-You Gave Me Hope t
« Reply #2 on: Dec 29th, 2007, 5:28pm » |
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I will hit the store tomorrow for the Melatonin..everything is closed around here already. I did ask the Dr about O2..his answer..very hard to get approved by the insurance company and walked away! Nice guy but I felt like I knew more than he did and he sure wasn't supportive. He gave me a script for prednisone for 3 weeks (which my old timey pharmacist thought was a bit long) and for verapamil. My blood pressure was high so think I'll go to my Fam Dr before I start the prednisone.
So happy to have another 'experienced' woman on the board that I can relate to! As I read some of the posts early this am...the tears just started flowing (and I am not a crier) and wouldn't stop! It lifted me out of my depression!
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txbeck
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Re: New Member-You Gave Me Hope t
« Reply #3 on: Dec 29th, 2007, 7:23pm » |
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First of all, it's none of his business what the ins. co. does. I still don't know for certain that ins. will cover mine, but it should. I maxed out my coverage in Sept. last year, (er, this year...I'm counting seconds 'til Jan 1 to get all my meds refilled!)but oxygen is cheap at twice the price. I'll find out next time I refill tanks.
Don't worry that he is unfamiliar with it. That's why you take him the documentation from the research. My doc said, "But Becky, you don't have respiratory problems!" No, but it stops CH! I didn't push then. The neuro did prescribe it and now my internist, still puzzled about WHY it works, concedes the fact that it does. I'm his only CH patient and he's learning along with me. He'll be reconsidering the next chronic "sinus headache" he sees, too!
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| « Last Edit: Dec 29th, 2007, 7:32pm by txbeck » |
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Becky
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Rumeke
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Re: New Member-You Gave Me Hope t
« Reply #4 on: Dec 29th, 2007, 7:44pm » |
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That's what confused me...he KNEW that it helped abort CH in some patients but I guess he felt he'd rather prescribe meds rather than try something that didn't have tons of side-effects! Oh well, not going back to him anyway.
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Linda_Howell
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Re: New Member-You Gave Me Hope t
« Reply #5 on: Dec 29th, 2007, 11:02pm » |
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[quote][So happy to have another 'experienced' woman on the board that I can relate to!/quote]
HEY?????????????????? There are hundreds of us who can relate here. 
Do not and I repeat do NOT let any professional tell you that women do not get CH. (In fact do not let anyone named BobP tell you that either.) private joke.
You are among friends here. A LOT of them of the female persuasion.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Racer1_NC
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Re: New Member-You Gave Me Hope t
« Reply #6 on: Dec 29th, 2007, 11:57pm » |
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Rumeke.....
I noticed you are close to Winston-Salem..... try Dr. Paul Martin....he's my neuro and he's good.
Bill
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"Everybody's Gotta Learn Sometime."
Eventus stultorum magister.
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Rumeke
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Re: New Member-You Gave Me Hope t
« Reply #7 on: Dec 30th, 2007, 8:13am » |
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Bill, thanks! I had him on my short list to call for an appt. asap. I also need to see my Fam Dr about my blood pressure and the fact I am disappointed in the Dr he referred me to for the CH. I feel like it's another example of 'you scratch my back.." rather than who will give the patient the best care.
We used to live in Clemmons years ago so I know the area well.
Thank you for the info again neighbor!
Judy 
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PollyPocket
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Re: New Member-You Gave Me Hope t
« Reply #8 on: Dec 30th, 2007, 9:08am » |
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Good morning Judy, nice to meet you.
I am a 44 yr old female ch'er- 22 years episodic. I recently had the same experience with my GP and oxygen. One of the very first things out of his mouth was that the o2 was really expensive and the insurance co probably wouldn't cover it.
I went to my old GP and got the script (though he was reluctant at first and the neuro he consulted said he'd never seen a woman with CH before!) Anyway, I went to a medical supply company who was very sympathic and helpful, I rented the equip for $50.00 a month and to refill was $26 a month. I had a monster sized tank so I never had to re-fill it. Definitely be persistent about the oxygen! It really does work!!
You'll find a lot of help and support here. Welcome to the family 
Jen
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
"If I don't remember it happening, it never happened.  " - Tori
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Bob_Johnson
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Re: New Member-You Gave Me Hope t
« Reply #9 on: Dec 30th, 2007, 9:19am » |
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Fist things, first! A new doc.
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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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Rumeke
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Re: New Member-You Gave Me Hope t
« Reply #10 on: Dec 30th, 2007, 9:22am » |
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Hey Jen! I really appreciate the support I've received from this forum..it has kept me going the last few days!
I will pursue the O2 with the new neuro once I get an appt. I just can't see wasting my $$ on the Dr I saw friday! I may check with my insurance company too and see what they'll pay if anything.
Judy
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PollyPocket
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Re: New Member-You Gave Me Hope t
« Reply #11 on: Dec 30th, 2007, 9:47am » |
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Judy, I have new insurance that won't cover the CH till next year - preexisting condition  I paid for the o2 out of pocket, and the medical supply place, as I said, was very sympathic and said they'd "hook me up" Boy did they ever! Ins or no ins., its well worth it.
Bob provided excellent info for you and I hope you check all the resources available to find a good doc. Good Luck!
Jen
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
"If I don't remember it happening, it never happened. " - Tori
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Charlie
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Re: New Member-You Gave Me Hope t
« Reply #12 on: Dec 30th, 2007, 10:12pm » |
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Good that you found us and it's good to meet you.
Pay attention to these kids. They know more than I.
Anyway, here is what worked so well for me. It's non-invasive and easy on the pocketbook. Good luck.
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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