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Raikana
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Help for Supporters
« on: Nov 8th, 2007, 6:14pm »
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Hey, this is my first post here, so bear with me for a little while...
 
My name is Megan, I just recently (this week) learned about Cluster Headaches. Now I'm trying to find out all that I can.
 
My boyfriend is not diagnosed with it, but everything that I have read sounds dead on what he's going through. This is his third cycle, I think. So far they've only been in the winter, starting around November and ending February or March. Getting hit once every day. For the past two cycles hits would last 15 - 30 minutes with the worst being around a 5 on the Kip scale. This cycle (which started just over a week ago) is so much worse. Hits have been lasting 2 hours with the worst one peaking at around a level 8 on the Kip scale. He's 17, and going through emotional difficulties as well as this physical pain.
 
The worst part is... I only get to see him once a week during class. (We're both homeschooled, so meet once a week with other homeschoolers to go over stuff.) Turns out, halfway through class is the time when each of his attacks come. Today was the first day I saw him get hit with it... and words cannot describe how much I hated to watch it in him. He stood and left the room, and I caught a glimpse of him a few minutes later with his head in his hands, the one eye watering, and his face flushed red. All I wanted was to sit on the floor beside his chair and help him to wait it out.
 
Here's the catch: I can't. His parents don't seem to trust me... every action is interpreted wrong. I have no clue how they would see it if I dropped all my school and just sat down beside him as the attack runs its course. But I don't think they'd take well to it. So the one thing that I might be able to do... I'm not allowed to do. I need to know, as his supporter, what else I can do.
 
I've been lurking around this community... and you people are amazing! You really are like a family here. I know that you'll be able to give me the advice that I need to help him with this, even though I'm forced to remain distant.
 
A loving supporter,
Megan
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Re: Help for Supporters
« Reply #1 on: Nov 9th, 2007, 12:33am »
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Hello and welcome Megan  Kiss  
 
Thank you so very much for having a heart big enough to care so much for friend that you meet only once a week, for having enough initiative to read and learn about the condition so that you could recognise the symptoms, for having courage to want to go sit with him to share his pain and finally having the wisdom to think twice about how his parents would take it. You are one absolutely amazing young lady and I have a lot of respect for you already.
 
I am a supporter for my husband who has CH and I can tell you that it is really tough. It takes a lot to be a supporter, let alone a good or effective one. If his parents may react unfavourably you need to think first about how involved you would like to be and how much you could do, realistically.
 
One thing I wasnt sure from your post though is why do you think that his parents would not trust you? Have they done or say anything to you to that effect? How do you know that he hasnt been diagnosed? I would have thought that they would appreciate someone trying to help their son?
 
Until I can understand the situation a bit more, I can only suggest that you slip him a note saying something like : " have you got clusterheadaches? ", " You may like to check this website out www.clusterheadaches.com " and see what his reaction is like.
 
That may allow him to start talking about his headaches to you and seeing him opening to you may help ease his parents anguish, whatever it maybe.
 
Let us know how you go please. You can also contact me at any time, PM or email , I am always here for you.
 
HUGS and lots a love.
 
Annette
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Raikana
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Re: Help for Supporters
« Reply #2 on: Nov 9th, 2007, 10:17am »
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I've sent him a link to this site, and a wikipedia article on Cluster Headaches. He says that everything he's read sums up what he feels pretty accurately. No doctors around here really know about this condition, though... we live in a kinda piddly little area. Right now he's just started going to the doctor and they've begun regulating his diet trying to find out if he's allergic to anything. Which I highly doubt. They've taken CT scans and found nothing wrong. They've run all sorts of tests and found out that he is quite healthy and that there is nothing that should be causing these headaches. But the pain that I see in him is very real.
 
He's talked about them to me. In fact, it's all we talk about with what little time we have right now. I get 30 minutes a day with him on Yahoo, and that one day of class time.
 
I also know for a fact that his parents don't trust me. They haven't told me so, they're too sweet to say that to my face. They really are wonderful people, and I've grown to love them very much. Which is why it hurts that they always seem to look at me through a warped piece of glass. But... I try and tell as few people as possible about this situation... I love his parents, and I'm willing to jump through all the hoops. Suffice it to say that I have very limited communication with my boyfriend, and there's nothing that I can physically do to support him. (Also, I've never done anything which may be seen as going too far, unless you count holding hands, like they do...)
 
Also, I think I can add that his parents haven't understood how much I care. Like I said, yesterday was the first time I saw him get hit with one of these. He had told me how much it hurt, but I hadn't understood. I was well and truly devastated. I think that now that I've seen it once I'll be able to hold myself in check the next time I see it, but I'd never seen anything like it. He sat in his chair, his head in his hands, not making a sound, rocking gently forward and back. His Mom saw how much it affected me that day. She said I looked "quite distressed." Heh... That's one way to put it. So last night I was given a lot more time to talk to him on IM. We thought we only had a half hour, but as the time was coming to an end, she walked into his room and told us we could talk longer. I was overjoyed and immediately began to try and get him to think of anything besides the headaches that we'd been talking about for the past 30 minutes. I think I succeeded for a little while. He began offering his thoughts instead of just reacting to mine.
 
It seems so weird to come here and ask for advice... I feel a little hopeless, like there's nothing that I can do. But I also know that I can't let myself fall into that, he needs me to be strong. To be the ray of sunshine to break up his little black rain cloud. Please, if there's anything else that I need to clear up ask! I'm so willing to be his supporter, so willing to be there for him through his happy times and his pain. I'm not going to let this beat him, or me. I can only pray that his parents learn that I can help him if they give me the chance... that he needs every supporter that he can get, and he's got a group of six friends (including me) who will willingly and joyfully offer everything that they have for him.
 
Thank you so much for your words! Really, I think the biggest thing that I need right now is the strength that others can offer to me for him. I am overjoyed that I've found this site where I can ask for that! Thank you so much!
 
Megan
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Re: Help for Supporters
« Reply #3 on: Nov 9th, 2007, 2:53pm »
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Hi Megan,
 
I am an episodic clusterhead and Father of 10 and living proof that CH will not keep you from having a meaningful life.
 
I think the concern his Mother saw in your eyes has unlocked the door to changing their perceptions.  This is evident by the extra time you were given to chat.  It'll take time.  I know patients does not come easily to young people.  For now, know that CH will not kill him.  
 
He does need a proper diagnosis and, seeing as he is still 17, that remains in his parents hands.  Hopefully he can broach the topic of CH with his Doctors and get them thinking in that direction.  Make sure he visits www.ouch-us.org so he can print off the materials there to bring with him.  Have him take the cluster quiz linked to the left too.
 
I agree with Annette.  It takes a lot out of a person to be a supporter.  You have a very caring soul and also have my respect.  Stay strong...
 
-Dennis-
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Re: Help for Supporters
« Reply #4 on: Nov 9th, 2007, 9:56pm »
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My dear Megan
 
You are indeed a very intelligent yet so loving and caring young lady. You have my admiration.
 
I am actually a GP ( family doctor ) and my husband has CH as I have told you. Its such a rare disease. Most doctors have no idea what it is let alone how to treat it. I myself didnt know much about it initially, even if I was the one diagnosed my husband with it. It took me more than 15 months of intensive research and a lot of reading to get to know as much as I do about it now.
 
Your friend and his parents need to see a neurologist as soon as possible, preferably one who specialises in treating headaches. Please go to this website www.ouch-us.org . They are a special body dedicated to clusterheadaches. Many people here including myself are members and their officers are regular posters here. From that website you can see a list of doctors/specialists who are familiar with diagnosing and treating clusterheadaches. You can look for one in your area or at least close to the area.  
 
There are many information from this site and from the OUCH website that you can print out for your friend and his parents to read. They can also take them to the doctors. Most people here need to educate their own doctors by doing exactly this.
 
I believe that your friends parents are very scared since they havent got a diagnosis yet. They maybe thinking that their son may have a brain tumour or some other deadly diseases so they would be fearful of who may know. If you show them that you do care from the bottom of your heart and all you want to do is to help, they will eventually see past whatever suspicions they may hold about you.  
 
If you are going to be a supporter, then be prepared to fight. This condition is so rare and so hard to understand that you will come up against a lifetime of people not believing in you, doubting you and even downright brushing you aside.  
 
Even most hospital staffs dont know what to do when seeing one getting hit. Read the board and you will see accounts of people being mistreated all over the world. The last time I took my husband to the hospital and he took a hit in A & E, I had to push the nurses and doctors out of the way and grabbed the oxygen for him myself. When it comes to supporting a CHer, you need to be so strong that you dont just stand up for yourself but you fight for your loved one each and every single day.
 
For now, you can try doing this for him. The next time he gets hit, give him a bottle of Redbull or Monster to chug down, get him a wet cloth with ice cubes wrapped inside for him to put on his eye and neck, keep him as cool as possible by putting a fan to his face if you can. If he has CH, these will help. If not, it wont harm him in anyway.
 
However, the most important thing now is to get your friend diagnosed properly and then treated properly. Do you know if he has taken the quiz on the left hand side? Do you know if he has joined this Board and read? If he hasnt , encourage him to. Maybe you can give his parents the link to this site and the OUCH site as well. They can come and read and see for themselves.  
 
Until your friend is diagnosed properly, you can tell him that you care and that you would be there for him. I am sure that in itself will make him feel so much better.
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Re: Help for Supporters
« Reply #5 on: Nov 9th, 2007, 11:27pm »
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Dennis:
Thank you so much for your support! Your words mean so much to me! Thank you so much. ^_^ I think you're right... I think his Mother is beginning to see that I really do care. Patience is not my strongest virtue... but I'm willing to learn it if it means I can help my friend. Yes... I can see that it does take a lot out of a person to be a supporter. And I'm more than willing to be a supporter regardless.
 
Annette:
Wow... Thank you! Your advice and your support... it's beyond words. Thank you!
 
They are going to see a neurologist. I told him to take info on CH and he said he would. I also sent him the names of a few doctors I found in our area via the OUCH website. I'll remind him to take this stuff to his family doctor.
 
Well, he has had a CT scan that found nothing there that shouldn't be. So, they've known that it's not a tumor for two years. They just haven't known what it is. Having a name for what he's going through and the knowledge that it isn't fatal will help them a lot. But you're right... I think they are beginning to see how much I care. And if they do... then maybe, finally, some stress will be taken off of both of us! God only knows that it's been making this even more difficult for him that his parents don't support him fully in this relationship.
 
Heh... I'm more than ready to fight. Those who know me well say that I'm primarily defensive most of the time. But if you can find something that gets me worked up... there's no stopping me. I know this will take it's toll on me. And I'm more than willing to accept that. It will be hard to watch him go through his attacks. It will be hard for me to explain to people. But I'm not going to let this get the better of him or of me.
 
I will definitely pass along your advice to him. ^_^ And, like I said, he's going to a neurologist sometime soon. He has not joined this board yet, I'll mention that to him. I sent him the link to the quiz, but he's explained his symptoms so well that I took it for him and it all but completely confirmed CH.
 
I've been reminding him every day that I'm here for him. I've been passing along the advice and the support that you people are giving me. It's really been helping him. I can tell. ^_^ Thank you so much!
 
Everyone who has given their support and advise to me... thank you! I'm being astounded by it! It's giving me the encouragement that I need to support my friend. ^_^ I can't express my gratitude!
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Re: Help for Supporters
« Reply #6 on: Nov 9th, 2007, 11:48pm »
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Hi again Megan
 
 
I am so happy to hear that your friend is going to see a neurologist and he will be armed with information that will help him get the correct diagnosis and then the right treatment. Its a great big step and it happened thanks to you! You are already the best supporter he has.
 
I am glad you have the fighting spirit but please bear in mind that you need to care for yourself and look after yourself really well too. Being a supporter can zap a lot out of you and it can become a totally consuming task. Sometimes you need to take a step back and breathe as well as live your own life. Balancing love and care and self preservation is an art. I am still only learning myself.
 
From what you wrote it seems that his parents still have some reservation about your relationship. There maybe many reasons for this and not all would be related to his headaches. Be patient and be gentle, if its supposed to happen it will. Dont push issues because they are fragile themselves not knowing what is wrong with their son. Give them time to get to know you. I believe that once they have seen the neurologist and get the correct diagnosis they will feel a lot better about the whole thing and will become more relaxed. Remember how much it hurts you to see him take a hit, it would hurt his parents ten times worse. Be loving and supportive to them too if you can.
 
All the best and keep us posted. I hope to see your friend joing the board soon. He will get  a lot of support here too and it will help him a lot to be able to talk to peole who understand completely.
 
In the mean time, take care and God bless. Painfree wishes to you all
 
HUGS
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Raikana
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Re: Help for Supporters
« Reply #7 on: Nov 10th, 2007, 1:59pm »
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Yeah, I do have a fighting spirit... it's not in me to let someone suffer. And I'm always willing to pour all I have and more into them to make them better. I will often need to be reminded to live my own life. It will definitely take some practice, to learn how to balance care and taking care of myself, too. But I think I'll get the hang of it eventually. ^_^
 
*sigh* Yes... his parents have all sorts of reservations about this relationship. I understand that. But... I didn't come here about that. I understand that I'm going to have to be patient and gentle and caring to win their hearts, and I can see that beginning to work. They are beginning to grow accustomed to this idea. So... things should start looking better on that front, soon. I can't help but wonder if the stress they've been putting on us has been adding to his attacks...
 
Good news! Thanks to all who sent me tips on home "remedies"! The doctor that he went to put him on an elimination diet, taking out everything with any sugar and any caffeine and really... anything. Looking for food allergies. (Which is silly, in my opinion... he's a picky eater and eats the same stuff in winter as he does in the summer... And he doesn't get any hits in the summer... But the Doc's a professional and I'm not, so I'll shut up about that.) But this morning he felt another hit coming, ate a big breakfast, took 2 Excedrin, drank a can of coke, and a bunch of coffee. He's incredibly hyper right now... but the headache stopped before it really started! So... he's completely ignoring the Doctor... but it worked! This is the first thing that's helped him! Thank you so much to everyone who suggested that!
 
So.. I'm going to try and get him to join this site. ^_^ I'll get him to post to this thread when he does.
 
Thank you again to everyone offering their support and advice! It's working wonders for us!
 
*hugs you all*
 
~Megan
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Re: Help for Supporters
« Reply #8 on: Nov 10th, 2007, 2:52pm »
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Wow Megan - what a great supporter you are!!
 
Being a supporter myself (and almost 30 years older than you are), I understand the helplessness you feel very, VERY well.
 
Sometimes just knowing there is someone else watching out for the sufferer is enough.
 
I'm glad to see that his parents are coming around and seeing you in a different light.
 
I wish you all the best.
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Re: Help for Supporters
« Reply #9 on: Nov 11th, 2007, 5:52pm »
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I had a few more questions come up...
 
Does using caffeine as an abortive trigger rebound headaches? It seems that since he's started doing that he's been getting the headaches more times a day. And as such, they're less predictable.
 
Also, his doctor doesn't seem to be listening to him at all about CH. He didn't look at the log my friend has been keeping, and he is trying tests for food allergies and sinus troubles. What can I do about that? Just encourage my friend to keep at it? Or should I take a more active role?
 
Before he realized that these headaches would come so frequently he had planned on joining the Air Force. Is that still an option if abortives are found that work for him? If not, what career opportunities are open for him?
 
Thank you guys so much!
 
~Megan
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Re: Help for Supporters
« Reply #10 on: Nov 11th, 2007, 7:02pm »
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Hi all!
 
Well, this is me ^_^. Wow... You people have been such great support for Megan... I can't thank you enough. She has been so wonderful! I know for a fact that I would not be as cheery as I am without her. You guys have helped so much... I can tell. Sorry I havn't joined up sooner... Megan's reminded me once or twice I think but, true to form, I forgot -_-. But, now I'm here ^_^ looks great!
 
Oh and I'd be happy to answer any questions you might have about anything...
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Re: Help for Supporters
« Reply #11 on: Nov 11th, 2007, 7:50pm »
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Welcome home Spartan  Smiley
 
You are now among family and friends who understand exactly what you are going through and will be here for you through thick and thin.
 
I suggest that you post something about yourself in the "Getting to know you" section so that we get to know you better.
 
Hugs and painfree wishes.
 
 
Duh ! You have already done that ! Never mind me, I am getting old   Tongue
 
 
Annette
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Re: Help for Supporters
« Reply #12 on: Nov 11th, 2007, 10:00pm »
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Yep, done that Smiley Thank you for the warm welcome though... Megan has been telling me quite a bit about you and what you've told her ^_^ good to meet you.
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Re: Help for Supporters
« Reply #13 on: Nov 11th, 2007, 10:12pm »
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You know what Spartan ? I really really pray that you dont have clusterheadaches, but if you do, you are already 3/4 way to be a survivor, a wrrior, a winner ... because you already have the 3 most important weapons that will see you win against anything :  knowledge, attitude and a greater than great supporter  Smiley
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Re: Help for Supporters
« Reply #14 on: Nov 11th, 2007, 10:14pm »
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*smiles* Thank you so much for your prayers... And support. I am truely blessed to have such a supporter as Megan...
 
So what's the 4th?
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Re: Help for Supporters
« Reply #15 on: Nov 11th, 2007, 10:19pm »
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O_o Isn't this what any supporter would do...? I really don't think I'm doing any more than normal... And really, I must border on annoying with how much I pester him about stuff...
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Re: Help for Supporters
« Reply #16 on: Nov 11th, 2007, 11:12pm »
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[quote author=Spartan1128 link=board=supporters;num=1194563664;start=0#14 date=11/11/07 at 22:14:42
 
So what's the 4th? [/quote]
 
 
The 4th is a doctor ( GP or neurologist ) who will listen to you and work with you to find the best arsenals out of the bag of many, who would prescribe oxygen at high flow rate and a non rebreather mask, who would jump on insurance companies to fight for more prescription meds for you ...
 
Once you find this doctor, give him or her plenty of mandarins and dont let go !  Wink
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Re: Help for Supporters
« Reply #17 on: Nov 12th, 2007, 9:36am »
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We're working on getting that one down, too. ^_^ Also, I've been told that it may be a possibility for me to tag along to the neurologist appointment that he has next. It seems like, of all the people around Spartan, I'm the one that's done the most research. So that'll make it a little easier to talk to the Doc about the possibility of CH.
 
Yay! I feel like things are getting done! It's maddeningly slow... but joining up to this site has been the best thing I've done yet. ^_^ I've learned so much, and gotten so much encouragement... It's been awesome!
 
Hugs and well wishes to everyone!
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Re: Help for Supporters
« Reply #18 on: Nov 12th, 2007, 10:11am »
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Hi Megan,
 
I'm kind of new at this too although I've been here for a year. I am a parent supporter of a 22 yr old daughter. We have many similarities. We live in a rural beach town and medical treatment is limited. My daughter was in college last year so she got better treatment when she went back to school. Our local doctor really was clueless what he was dealing with and told me I worried too much because I questioned Lisa driving on the meds he prescribed. He also told her no need to write everything. When she returned to school last fall the nuerologist had her keep a journal to see a pattern. He also did the diet thing, eliminating a few foods each week. This was because he really wasn't sure what she had yet. CH usually doesn't respond to diet changes although alchohol triggers for many. I never quite understood the caffeine part but I think it has to do with caffeine being much more responsive to an attack IF you don't use it regularly. I too have been very outspoken in the ER room, getting the o2 quickly and correctly. A non breather mask over the mouth and a speed of 15 is most important.  I've met very few nurses that knew this and fortunately most of been open minded to me. I'm not sure if they will listen to you because he isn't related and is a minor. Be sure his parents know to do this in case you can't go with him.  
 
The more you learn the easier it gets to cope. For me, counseling has been a big help. It's given me strenghth to deal with those who don't understand this, whether it's an employer, a family member or someone at the hospital. Good luck!!!
 
Charlotte
 
I forgot to tell you you are doing great!!! Hang in there!!
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Re: Help for Supporters
« Reply #19 on: Nov 12th, 2007, 9:26pm »
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Yep. We live out in the middle of nowhere. Makes things difficult sometimes.
 
Spartan's been keeping a log of his headaches. But the doctor that he went to didn't look at it.
 
Very few people seem to know about CH. Which is why Spartan has been put on a diet. The doctor seems to think he has food allergies... *sigh* Which I highly disagree with.
 
Thanks for the encouragement, Charlotte! ^_^ It really helps.
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Re: Help for Supporters
« Reply #20 on: Nov 27th, 2007, 4:16pm »
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Here's an after-holiday update. It's been a while since I've been on...
 
Spartan now has a neurologist appointment for the 13th of December. Unfortunately... I won't be able to go. *sigh* The reason isn't that I can't make it... It's that his parents won't allow it... *sigh* Again... that's my problem, and not the one I've come to this board about, but... it's a large problem for the both of us. And it's gotten both of us a bit down. I'll be printing out a bunch of stuff to send with him, but... I won't be able to talk to the Doctor at all.
 
Anyway... There's the update...
 
I'm kinda at a loss as to what else to do... With everything... With being a supporter... With Spartan's family... everything...  Cry
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Re: Help for Supporters
« Reply #21 on: Nov 27th, 2007, 7:40pm »
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If nothing else, give it a year.
 
I know that a year seems like a long time, but it's really nothing at all.  At eighteen, there isn't really much that anyone can say about who goes where, when.
 
Time has a way of solving many problems.
 
Best of luck to the two of you, and all the best wishes,
 
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
Raikana
New Board Newbie
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Re: Help for Supporters
« Reply #22 on: Nov 27th, 2007, 8:03pm »
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Two years, more than likely... And even then that might not be long enough...
 
But thank you. I need all the well-wishes I can get at this point... that means a lot to me. Thank you.
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Mybelle
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Cluster what?

   


Gender: female
Posts: 89
Re: Help for Supporters
« Reply #23 on: Mar 18th, 2008, 4:17pm »
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Hi - I'm new to this site and my husband is trying to do this alone...he won't go to a doctor and will try anything - he gets one hit at 2:00 a.m., but it has been helped alot by melatonin - are there any other remedies we can do at home? I sat here and cried reading everyone's postings....I am beyond frustrated...this just started about 1 1/2 months ago and we discovered the melatonin about 2 weeks ago so hits haven't been more than a 3 or 4,,,but the other day he had a really big one and it lasted at least 4 hours......I was beside myself...he eventually went to sleep for 2 1/2 hours and when he woke up he felt so much better - his blood pressure while he was experiencing the pain was 155/96 and his pulse was 48!!!! when he woke up his pressure was 130/80 and pulse was back up to 60...I'm so glad I found this site...my husband is not computer literate but I am so I just tell him all the research I have done - but I would like him to see a neurologist - but he says they don't know any more than we do about this!
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Linda_Howell
CH.com Alumnus
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Hearing is one thing.  Listening is another.

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Posts: 6721
Re: Help for Supporters
« Reply #24 on: Mar 18th, 2008, 5:16pm »
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Mybelle,  
 
    I'm afraid that your post  will probably be lost in here on this particular thread and even though I saw it...others might not.
 
  May I suggest that you start a whole  new thread in this same section?  You can just copy and past e what you've said here onto a new thread.  If you can't figure it out I will be more than happy to do it for you.  Just didn't want to do it w/o your permission.
 
Linda  
 
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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