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Topic: What can I do??? (Read 341 times) |
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outsidelookingin
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What can I do???
« on: Aug 27th, 2003, 9:13am » |
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 Hi everyone. I am new to this board, but I know this will be a new home of mine. Someone I hold very dear to my heart has recently started with CH, and it is new to both of us. I cant begin to understand her pain, but the posts here have helped me see a little more inside her head and how she feels during one of these attacks.
I know there is nothing physically I can do for her during an attack--other than squeeze her head, or catch her as she passes out. Although, I wish I could just take her and run her away from the pain faster than it can hit.
I have taken her to the ER, pleaded her case there as best I could--this was before we knew for certain what these were; adm I have gone to her doc appts. with her, trying to convince the docs she needs pain relief, and some sort of way to get her life back, but to no avail.
My question is this: How can I better arm myself to get the docs to take her seriously? She tends to backdown at the docs, and though I have tried, I have not been able to help her get what we feel she needs. Should I take print outs, have website linksl, what? I just feel that this is the ONE way I can help her to get better, and I want to make it as rapid and as efficient as possible.
If anyone has any advice, I would SOOOO appreciate it! My heart is breakng for her, and her family, I just don't know what I can do. It just kills me inside to see her suffer like she does.
Thanks, and good luck to everyone! It seems this is the only place where people understand what is REALLY going on. Everyone else, thinks it's psychosomatic. You are all incredibly strong people. I know I will find our answers here...
Thanks, and hugs to you all!
Dawn
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Until her pain ends, life can not be hers and hers alone.
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JDH
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Re: What can I do???
« Reply #1 on: Aug 27th, 2003, 9:33am » |
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Dawn,
check out this link
http://www.clusterheadaches.com/about.html
there's everything you ever wanted to know about CH's right there.
Educate yourself about this and take print outs to the Dr. if need be and educate him.
hope all goes well,
Jim
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It's not what you know, it's what you can prove.
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badfly
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Re: What can I do???
« Reply #2 on: Aug 27th, 2003, 9:52am » |
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Welcome Dawn
INFORMATION is the key! You are absolutly correct in youre thinking. Print out all the information from all the places of interest here and the OUCH website. Sit down and read it all through carefully. Let your friend decide on 3 strategies to take controll of the beast and write it down on paper (so you will have good notes when visiting their doctor). I say 3 stratergies, as your doctor or neuro may disagree with one or the other for medical reasons not related to your freinds CH. I dont know your friends medical history/situation, but lets say if he/she has heart problems or somthing, the doc may not like one of your stratergies.
The next step is finding a good doctor or neuro (not always easy). As far as I am concerned a Doc is a paid profetional that provides a service. If their service is no good, I dump them as fast as I would dump my car mechanic. Phone around and ask the doctor or the receptionist if the doc has experience with CH. Ask on the board (here) if anyone can recomend a good doc in your area. On the OUCH site there is actually a list of recommended Doctors by area.
Lastly write down a list of goals to be achieved at the visit to the doctor and achieve them them. If it takes one or two more visits then keep motivating your friend to achieve his/her goals. Getting relief for CH is the most rewarding feeling ever! Be strong and assertive with the doctor if your friend is not getting the right kind of service.
Wishing you luck
John
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{Shout("Get this BEAST off my back !!!");}
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Cooked Brain
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Re: What can I do???
« Reply #3 on: Aug 27th, 2003, 12:47pm » |
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Hi dawn,
print out as much as you can from this site. For more info about meds check this link and print it out
http://www.headachedrugs.com/archives/preventivemeds.html
thank you for helping your friend, you are a true angel!
hope you will find a good doc soon, keep us updated...
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Donna
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Re: What can I do???
« Reply #4 on: Aug 27th, 2003, 3:25pm » |
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Hello Dawn and thanks for being such a wonderful supporter for your friend......she really needs one, as we all do.
It would be wise to have your friend take the Cluster Quiz just to see if she fits a rather classic pattern, or if the doc might have jumped the gun. One of the reasons I am questioning is that you mentioned that she passes out. This is not the norm for cluster headaches and needs further investigation, if not by this doc, than by another. Preferably a Neurosurgeon.
Supporters have needs too. One is that we sometimes have guilt complexes because we feel that we need to be doing more for our clusterheads, when in reality, there is nothing that we can do while they're in a cycle. We have a support group for ourselves too, as well as a very helpful group known as the Family Services Team which covers a little broader scope. You can find this Team by going to the OUCH site (just click on it in the left margin) and we are under Cluster Help, or just simply e-mail to clusterbuds@hotmail.com. All conversations are strickly confidential.
We hope that you will incourage your friend to read all of the wonderful info that this and the OUCH site has to offer.........and remember, there is almost always someone right here to help
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outsidelookingin
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Re: What can I do???
« Reply #5 on: Aug 27th, 2003, 4:55pm » |
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 Thank you all for the responses so far! My friend is on here and has already become VERY active--CryingInPain. We are pretty certain--I'd say 98% that these ARE CH. Donna, yes, the passing out, REALLY scares me! None of the docs seem to be incredibly concerned about this, but to me, her passing out 3 times in one 45 minute attack is NOT common. It scares the living hell out of me to see her there, and she just slumps, and looses consiousness for at least 2 minutes...just seems like there HAS to be more--unless her body is just shutting down from the pain. I dont know, obviously, because I have been lucky enough to never have one of these.
I will print out what I can, and go in and be armed. As you will see in one of her more recent posts, her med cocktail has helped dramatically, since she took it last night. Her hubby said she made it all night without an attack and didnt get another until mid afternoon today! SO it seems her doc had some idea of what might help, BUT, I still want to be her "Jiminy Cricket", so to speak and be sure she is getting all that there is out there to help her.
I think she DOES need a better evaluation, because of the passing out, AND I noticed yesterday that her reflexes on the same side as her CH are MUCH worse than her left. So this too, is worrysome to me. I am going to be more focussed on that at her next appt.
Thanks again to all of you! This seems like such an invaluable resource for people who suffer and those who help them--I know that i have learned in just a few days, what would have taken weeks, if not months, of research.
I can't thank you all enough, NOR can I say my heart goes out to all of you sincerely rnough to let you understand my concern.
Thanks again!
Dawn
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OneEyeBlind
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Re: What can I do???
« Reply #6 on: Aug 27th, 2003, 6:05pm » |
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I have to agree with Donna that "passing out" is not the norm. Ya wish ya could but ya just have to endure the pain. The cluster head quiz would be a good place to start. Keep researching and with each difference you find in her condition ... keep looking. Cause if it isn't cluster headaches it could be something serious. Clusters don't kill, but other stuff does. Keep grilling the neuro on what they have found. Make them do all the tests .. MRI, MRA .... and keep searching. If it's clusters, you can just fade in to the backround and support your friend when it's over ... if not ... battle to find the true cause.
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UnsolvedEquation
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If someone is really passing out ... Seems like there is another problem. I've never heard of a CH sufferer passing out. Better keep on the docs to find out what is wrong. Although passing out during an attack sounds pretty good to me. I'd rather be unconsious !! Goodluck and best wishes !!
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Donna
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Re: What can I do???
« Reply #8 on: Aug 28th, 2003, 6:44am » |
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One thing that I forgot to ask is what meds the doc prescribed? Hopefully a good preventative and an abortive?
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jminmilwaukee
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Re: What can I do???
« Reply #9 on: Aug 28th, 2003, 6:56am » |
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Hello and welcome,
Althought the others have covered most of it, I too am concerned about the passing out thing. Although I have not heard of this I suppose it could be the bodies way of dealing with the pain. I am surprised that more of us do not actually go into shock as a result.
Anyway, one thing your friend MUST try is Oxygen. Breathing pure O2 at the onset on a very high flow rate has been very successfull at aborting an attack withing the first 10 to 15 minutes or so. As a bonus, should this not be Clusters your friend has, 02 should not be too risky.
Good luck, your friend is very fortunate to have you.
Jmin
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CryingInPain
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Wow!!
Hello There Dawn!!
Im guessing I am that friend * Looking around the room * hehe
I sent Dawn this site when I began researching CH's online and she is an AMAZING friend! She has signed on here and read posts and spent countless hours online looking up things for me and as she said spent hours in the Er as well as running me to my Dr appts. It has been a hectic time for everyone involved not just me and I am so very thankful to have a friend like her!!
And yes I am the one that passes out usually 2 times during an attack usually a Kip 8 or higher I pass out. It only lasts about a minute and Im not sure if my body just shuts down for a minute because it doesnt know what else to do or I dont know if I get so worked up when one hits I just pass out. As she said the Drs are not to overly concerned with it. I even passed out at the Er and Dawn said they just poked me and when I woke up they walked away.
I took the CH quiz the first day I found this site and I am 99.9 percent sure it is CH's when I began reading this site it sent chills down my spine as to how much I had in common with everyone. All the symptoms and everything I have are listed on this site or others. As well as speaking with my Dr.
They want me to do a Spinal Puncture or something to test the Spinal Fluid Level which to say the least I am scared shitless of!! I am not letting them LOOK at my spine until they give me the meds I want to try
( Injections and O2) Sooooo Im just hanging out until next Thursday at my next appt and going to plead my case one more time at the same time I am looking for another Dr with the help of a few on this board
Right now I am on Verapamil 180mg and Imitrex Oral 50mg ( up to 4 pills a day ) and Toradol every 6 hours as needed.
I know the verap is in the right direction possibly just a higher dose and as we know the Imitrex Oral just takes WAY to long! And as I have found out Toradol just shouldnt even be used in treatment of CH's
~hugs~
Jen
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Charlie
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Re: What can I do???
« Reply #11 on: Aug 28th, 2003, 3:41pm » |
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Welcome to our little world. The others have said a lot here and they know their business. The passing out thing is odd. Sometimes getting up very quickly from a chair or bed will do this because of O2 deprivation. This happened to me twice when I was in my 30s but never again. Just an idea. Find out more about this.
Here is something to try that helped me and others shorten the attacks. Take a look and good luck:
http://www.netsync.net/users/charlies/
Charlie
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outsidelookingin
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Re: What can I do???
« Reply #12 on: Aug 28th, 2003, 4:35pm » |
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Well it seems that Jen found me, and has answered most of your questions. She had another terrible, out of the blue attack--no shadow or anything, it just hit her like a brick--which seemed to odd to me, she usually has a shadow and the pressure leading up to it. Is THIS normal?
We called her doc during this attack and all she could say was to go to the ER...well, her hubby insisted she be seen again tomorrow, and so we are all going--her, her hubby and me. We are going in armed and theporr guy is going to feel like he is under attack, but quite frankly I dont care. They need to take her seriously and get her the abortive meds she needs and that work for her. I can understand trial and error for most things, but if there are PROVEN methods, then she needs to be using them and trying them. OBVIOUSLY the imitrex pills DONT work. SO enough of them.
I am SOOO frustrated I could scream!!! My heart just breaks to see her in such pain, and I KNOW it kills her hubby even more! I am going to head over to the support boards as well, I need some help on how to cope being on the outside like I am...
I again, can NOT say enough about these boards....I fell like I can come here and find something to help her....and to give me the backbone to get her the help she so desperately needs!
Thank you...everyone!
Hugs
Dawn
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Cooked Brain
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Re: What can I do???
« Reply #13 on: Aug 28th, 2003, 4:40pm » |
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thanks for being there for her dawn, you're a true angel...
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Donna
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Re: What can I do???
« Reply #14 on: Aug 29th, 2003, 7:03am » |
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Don't give up on the Imitrex until you've tried the injections. Pills take much longer to disolve and distribute.
Also, educate yourselves re: oxygen......it works wonders for most ch sufferers.
It's all here on our site.....print it out and take it with you to the doc.
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