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Topic: Needing help for Jill (Read 1462 times) |
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Linda_Howell
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Needing help for Jill
« on: Oct 5th, 2002, 8:09pm » |
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Right now I am at a loss to help Jill (20 yr. old college student) who has been asking for my help via e-mail.
Her parents and a neurologis think she's over-acting and the Dr. wanted to put her in a hpspital for observation. She's tried many drug treatments which have not worked. After deciding to not see this Neurologist any more she knows she will have to wait weeks to see anyone else. I have told her to drink lots of water, try ice/heat packs, sit in front of an AC unit or fan, drink strong coffee.....everything I can think of.
And still her HA's keep getting worse and more frequent.
Anyone have any suggestions that may help her deal with them until she can see a competant Dr. Linda H
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Night_Owl
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Re: Needing help for Jill
« Reply #1 on: Oct 6th, 2002, 12:02pm » |
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Tried breathing in a paper bag? I had one taped to my face last night.
Night_Owl
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Charlie
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Re: Needing help for Jill
« Reply #3 on: Oct 7th, 2002, 8:59pm » |
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All I can say is, try violent exercise, my thing, or stand barefoot on a cold floor. It sounds nuts but it may have the same circulatory effect as my technique.
I really hate this thing.
Charlie
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paul_b
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Re: Needing help for Jill
« Reply #4 on: Oct 8th, 2002, 12:35am » |
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During my worst cycle when nothing worked, I focused on surviving by addressing the anxiety of on coming attacks. I did this by knowing that each attack had an ending, endured the pain and blessed its passing. Regrouped with all the remedies you suggested but also minimized my goals. Conserved my energy for the battle with the Beast. Wish I could offer more.
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Chronic
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Re: Needing help for Jill
« Reply #5 on: Oct 8th, 2002, 9:19am » |
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I've heard that before all the newer medications, people used to dunk there heads in freezing cold water. Actually, it sounds like it might work....at least moderately anyway. Try that or jumping in a cold pool. Just a suggetsion.
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Riccardo
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Re: Needing help for Jill
« Reply #6 on: Oct 8th, 2002, 9:38am » |
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The main problem for Jill (I too have assisted her for a couple of hours in the chat) is not to cope with the pain, but with the relatives, the doctors and the college environment.
All we Fu##ing CHers cope with pain (someone better, someone worse). We have to help her in coping with the:
1st) relatives/parents= ask her the E-mails, and "sink" them with E-mails regarding CH
2nd) doctors= any good Doctor in (It seems me) Maryland? Any way to explain to this Doc how HUGE is the Jill problem?
3rd) College= the Simon Bower's letter to CH colleagues/relatives.... good also for the 1st point
Ciao to all you
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Riccardo OUCH-Italia
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Elaine
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Re: Needing help for Jill
« Reply #7 on: Oct 8th, 2002, 11:12am » |
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Jill was in the hospital a few months back d had that thing some of you have had done the dhe, (I am having a brain fart here) anyway when I called her she said that was not working either.
I am with Riccardio we need to find ways to help her cope. The meds I have told her about don't work for her.
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JohnM
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Re: Needing help for Jill
« Reply #8 on: Oct 8th, 2002, 1:31pm » |
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when I was young many many moons ago docs said I was lead swinging to miss school or later on work. They don't understand the pain. Imigran inj is the only drug that works for me. The waterx3 and my detox may work to break the cycle. Drinking "lots of water" is not explicit enough, you have to drink HUGE amounts (a large glass every 30 mins) and then it may work.
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SFChris
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Linda,
I too have tried to help Jill in the past - she is a very sweet young woman. Since she is in school in Baltimore, she should find a doctor at Johns Hopkins - one of the very best medical centers in the world...
Chris
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Starfire3
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Re: Needing help for Jill
« Reply #10 on: Oct 8th, 2002, 5:22pm » |
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Lots of water is a minimum gallon a day unless you are sweating or breathing hard - then you need more.
Personal trainers are currently being taught that we should drink 1 oz per body pound daily - minimum. That's a lot of water for some folks.
They are also taught that for optimal cellular absorption while we're rebuilding our body's water reserves, we should drink about 1/4 cup every 15 minutes. (having repeated faithfully what I was taught, I'll add that I have never worried about drinking only 1/4 cup at a time but that I do try to drink at least a gallon a day)
We lose about a quart of water a day through normal exhalation. Any caffein is a minus = gotta drink more water. It's not that bad once you get used to it. You are only peeing every 10 minutes for the first few days. After that your body seems to adjust and absorb instead of flushing toxins or whatever it was doing for the first few days.
I see a marked difference in my ha when I have been slack about water intake. The ha are far more powerful and hit more often when I get lazy about it.
I have found that keeping up with water, calcium, magnesium, and potassium (multivitamin or oranges and bananas) can help reduce the muscle cramping that pain tension causes when I have a ha. I'm talking about the shoulder/neck scrunch thing that makes my head feel like a 10 pound bowling ball being poorly balanced on a pencil - with my neck, of course, feeling like the pencil about to break. Keeping my shoulders relaxed is a big part of my pain control.
I'm truly sorry that I can't advise her about getting support from her people. I am grateful that I've never had to worry about that since I come from a family that understands ha. Too bad she can't generously share one of her ha with the folks who won't believe. They'd change their tunes quickly enough then, I bet.
- Starfire
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Opus
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Re: Needing help for Jill
« Reply #11 on: Oct 8th, 2002, 5:38pm » |
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The only thing I can add is the Hot pepper sauce under the tongue for 5 min. I actually haven't been able to this but eating hot sauce can get rid of one of my shadows. Eating hot sauce will also encourage drinking lots of water. PJB
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Jill
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Re: Needing help for Jill
« Reply #12 on: Oct 8th, 2002, 7:05pm » |
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Hey guys.....I hope that it is okay that I am posting....I feel bad for doing it. Am not sure why exactly... 
Linda had told me that she did this for me but I was not able to check it all.....I can not believe the help is so great. It means alot to me and I take everything that is said to heart...really I do.
I made the decision that I do need a new doctor when mine told me that I need psychological help (I hit my head when hit) and was accused of doing drugs. I am in the process of getting a new doctor but it is going to take a few weeks.....it is such a mess. Right now I am getting hit so very many times aday and am getting so tired (physically and emotionally) from them, not to sound dreary or anything.
I drink water all the time....I mean that is all that I drink and during a hit I take in ten times that amount....if that makes sense. I keep hoping that if I take in more than it will work, but nothing yet.
I have also tried cold cold water, hot water, ice, my head in the freezer, walked outside, breathed very deeply, focused my energy on the blood flow leaving my head, worked on the biofeedback tapes (I cannot focus like that or sit to try), drank very very strong coffee (I really do not like coffee) and more.
I am trying to fight this enemy within but it is hard. I really want to try Oxygen and the injections but without a doctor, I have no way of getting them. I am afraid of how much more I will have to take of the pain and am not sure how much I can take. I have only slept an average of an hour to an hour and a half a night for the last week or so and some nights, nothing at all. I can not eat much because the pain is so bad that I get sick....sorry for the details!
I guess this is long enough now....I am trying and really want to beat this thing in my head. I will continue to try the ideas that you gave me and if anything else comes to mind, I am willing to try just about anything at all.
I can not tell you how much this help means to me.....I am so very grateful. I try to explain it to my parents and they just do not get it. My mom does not ever want to talk about it and my dad is just there. Him and my grandma told me to take two aspirin and call it a day. I wish it were that easy. I have given up hope that they will understand even if that means I am without their support.....so is life... 
I have to run......another hit is pending....I can feel it comming.
Thanks for the help,
Jill
PS I hope it was okay that I wrote!
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Ted
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Re: Needing help for Jill
« Reply #13 on: Oct 8th, 2002, 7:22pm » |
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You hope it's OK you wrote? It's great that you wrote. This is probably the most important post and thread on this board in a while. Where in MD are you? I'm in MA and if we're close enough and you're willing to drive, I'll meet you halfway and give you one of my e-tanks til you get your own. You won't be able to refill it without a scrip but you'll have something to help for a little bit of time with an abortive that hopefully will help.
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Jill
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Re: Needing help for Jill
« Reply #14 on: Oct 8th, 2002, 7:38pm » |
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You guys are so very awesome....  and I mean that! I always feel bad for asking for help...somewhat....I hate to drag others down with me...if that even makes sense.
I live in Towson Maryland, near Baltimore. I am in utter surprise that this kind of help is offered and am not if I can accept it .....I feel kind of....guilty I think. I am not sure.
Anyways, I thank you all for the help and can not tell yuo what it means to me....I really can't
Thanks a million
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Ted
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Re: Needing help for Jill
« Reply #15 on: Oct 8th, 2002, 7:50pm » |
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I just checked Mapquest. We're 6 hours and 11 minutes away. But the way I drive that's more like 6 hours 10 minutes and 30 seconds . So if we meet 1/2 way it'll just be 6 hours roundtrip. Let me know here or at Jayacat2@aol.com
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Linda_Howell
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Re: Needing help for Jill
« Reply #16 on: Oct 9th, 2002, 12:51am » |
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See Jill? I told you that you could rely on this family of ours to help in any way they can...Thank you all for your suggestions (love the hat Riccardo)
Someone told you that you need phycological help because you bang your head???????????
OMG!!!!!!!well then they're about to take ME away aren't they? Bull-shit!!!!!!!!to that ....we''re called head-bangers for a reason Jill.
Hope you printed out Simons letter to show to family and Dr's and school personell. Write me any ol time Jill.
Thanks family. Linda Howell
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Jill
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Re: Needing help for Jill
« Reply #17 on: Oct 9th, 2002, 1:19am » |
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I am enthralled, amazed and delighted with all of the help that I have received...I really am! I know that I have said this....but it is so true.
I have printed all of the information for my professors for tomorrow (today.....it is so late). I have given up hope on my parents and as much as I am disappointed and upset that they can not understand nor do they try to....I can move on (I think).
Yes, Linda, it was my "old" doctor that told me that I needed psychological help....part of the reason why I dumped him. I am still confused over that statement and am a little lost and a lot upset that he said that.....maybe I do...who knows.
The pain is one thing, unbearable at that, but how do you guys cope emotionally? This may sound like a strange question but I am having a hard time. I am afraid to go anywhere or do anything because of getting hit.....I even have begun to avoid people because it is easier to avoid them than to explain it to them. I am not sure if this makes sense or not but to me it does.
The pain makes me doubt my existence in a way and I am not sure why I have to deal with this or what I did to bring it on.....I am not even sure...well....I am not sure how much longer I want to fight....sorry!
This is a long post and very sad.....I apologize for that....it is hard enough to deal with the pain but emotionally, I am a wreck too. I hate the looks when I have bruises, the comments from doctors and others, and I hate knowing and waiting for the hit.....
I will end this mad charade now and I am sorry it is so bad.....but just my thought to put out there.
Thanks
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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Riccardo
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Re: Needing help for Jill
« Reply #18 on: Oct 9th, 2002, 1:30am » |
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you said: The pain is one thing, unbearable at that, but how do you guys cope emotionally?......
hmmmm....years and years of experience.... 
You are younger than the average CHer, so it's more difficult, anyway. And, if you'll find a man that claims that he loves you (may be you have done that, already) tell him about CH. If he doesn't understand, leave him. It's hard to cope with CH, but it's harder to cope with the beloved ones that don't understand. You can't leave your family, but you can CHOOSE YOUR OWN family.
Love and kisses
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LTBullitt
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Re: Needing help for Jill
« Reply #19 on: Oct 9th, 2002, 1:49am » |
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Emotionally I don't cope, not well anyways. It rather shocks me how well some people do with clusters but I think they are just that much stronger than me.
I know having the wrong doctors doesn't help and I'm really sorry about that and have my sympathy.
I've seen every incompetent MD out there including specialists and shrinks. I had to see a shrink b/c I suffered anxiety due to the clusters which is pretty normal. But this moron put me on a pill form of thorazine!
Stick with the people who understand, find a few and hold them tight. They do seem rare.
You probably will fall apart emotionally and/or attempt to murder someone if you keep trying to explain Chs to impossible people. Life is too short and the pain is too intense to add that aggravtion to your life.
As I said, I go to pieces everytime a cycle starts so I won't be of much help.
It sounds a little cliche but try to look ahead to pain free days.
I try to focus on and promise myself all the things I will do when this cycle ends. Leaving my bedroom after months will be my first step.
yea, small things
going to a movie again, being able to read, kitty rescue missions, carmel flavoured mocha
i asked a question in a post just a while ago about mental health and the best reply I got was along the lines of who isn't menatally messed up with CHs
that helps alot, being here and knowing you aren't the only one who feels they are going insane
you just have to seriously reward yourself for going through this and look forward to that
"We're In This Together Now" is a good lyric
i'm not so good with words I know, just trying to help
I could buy you a present or something?
Presents always help me!
sorry about the spelling, clusters do that too lol
...Andrew
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Linda_Howell
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Re: Needing help for Jill
« Reply #20 on: Oct 9th, 2002, 12:07pm » |
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Sounds to me like you're pretty good with words Andrew. Hope you get out of that bedroom soon and can go see a movie. Go see the Banger Sisters, if you need a few laughs. Linda
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Drk^Angel
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Re: Needing help for Jill
« Reply #21 on: Oct 9th, 2002, 12:39pm » |
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Jill... I think emotionally, we all have problems dealing with it. Different ppl do different things to cope. Some ppl try to ignore the emotions, others prolly lash out, some may put on a mask during the day, and cry it out at night. Myself... I've spent a good deal of my life learning to shelter myself from my emotions, and now use that ability when needed, i.e. in cycle. An idea I'm working on giving a try is to like twice a day, let myself get really upset, and clobber the Hell our of a punching bag. You'll find your method of dealing. It may just take a bit of time.
PFDAN............................... Drk^Angel
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karen j
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Re: Needing help for Jill
« Reply #22 on: Oct 9th, 2002, 2:57pm » |
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Jill
I am not sure what your insurance situation is however I have a GP in Arnold MD (just outside Annapolis) that is caring enough to have attended a conference on cluster headaches since I am a patient of hers. She is with MD Primary Care and they are pretty good about getting patients in quickly. If nothing else, she could get you the oxygen. Her name is Dr Bailey and her number is 410-757-7600. I know she is about an hour away but just wanted to let you know. If you need someone close to talk with, please e-mail me - karen6468a@aol.com
Karen
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Jill
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Re: Needing help for Jill
« Reply #23 on: Oct 9th, 2002, 3:31pm » |
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Nothing seems to want to go right right now and I am so lost in what I need to do....
I have spent the last hour and a half calling doctors and my insurance, trying to get some help. However, my insurance will not cover anything except Andrews Airforce Base...I am trying to get away from the naval doctors because they are of no help. The other doctors are either all booked or they are too expensive for me. I even tried Dr. Baily and I can get an appointment for her but I can not afford to. I am a full time student and am alone in doind all of this. I can not afford to pay one hundred to four hundred dollars a visit.....there is no way.
I am crying now out of frusteration and anger because all I ask is that I get away from this. I just want it to end and it is not. I have missed so many classes, gotten no sleep and can not do this too much longer....no matter how much I want to fight.
Thanks for the help and I will have to figure something out eventually...am not sure what though. I was so happy because I had my referral and now look....
Thanks guys, pain free to you all
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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karen j
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Re: Needing help for Jill
« Reply #24 on: Oct 9th, 2002, 5:03pm » |
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I am so sorry you are having such a rough time. My heart just hurts for you  . Please remember that I am not that far from you and if you want someone to talk to I can give you my number or maybe make arrangements to meet just so you know you don't have to suffer alone-of course how can you be alone when you have this home to come to  ???? Just stick around here and take in all the advice-these are a good group of people who really care. Please do not hesitate to e-mail me anytime.
Karen
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