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Supporter's Corner >> Supporter's Corner >> Feeling helpless http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1221352598 Message started by flipperlips on Sep 13th, 2008 at 8:36pm |
Title: Feeling helpless Post by flipperlips on Sep 13th, 2008 at 8:36pm
Hi everyone. I find my self feeling helpless and not knowing what to do for my hubby. The beast has been coming to visit everyday, at least 3 times a day, for almost a year now. He hasn't had a PF day in so long. I feel so bad for him and I just wish that I could take away his pain. I spend so much time on websites researching looking for anything new that he may not have tried. I'm grasping at any straw. I go to almost all of his Dr. appointments with him and ask questions about things that I have read. I wish that this nightmare would end for him. I just don't know what to do anymore :'(
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Title: Re: Feeling helpless Post by DonnaH_again on Sep 14th, 2008 at 12:34am
I'm so glad that you found us. We have been around for about 10 years and a great number of us have been here from the first few posts.
If you will read the material in the left margin, you will find a lot of great info, and you will soon be hearing from people here that can give you a ton of advice.........some of which will probably work for your hubby. If you will give us a little info, it will help a lot..such as ..did your husband get his diagnosis from a neurologist? Tell us what meds he's tried. Has he tried oxygen at a high flow rate? What ever you can tell us will help. It's so hard to watch our loved ones going through this without being able to help. In most cases, when they are having a cluster headache, the best thing you as a supporter can do is just back off and leave them alone, unless they have specifically asked for your help. When he's not having a headache, discuss this with him. A supporter is vital to a sufferer and you're just being there for him is very important. Sounds like you're really trying, and we would like you to stay here with us and let us do what we can to help. It's not easy being a supporter, and we need each other to stay strong and in the right frame of mind. Welcome to your new home away from home. It's called Clusterville. |
Title: Re: Feeling helpless Post by Cathi_Pierce on Sep 14th, 2008 at 12:36am
Aww, Flipperlips, sweetie, you are there! That alone is a wonderful thing. I know it's hard to watch him suffer..remember, it's hard for him to have you see him so vulnerable as well! The best thing you can do ...you've done! You're here, reading and looking for something tht might help. I have to ask you, is he using 02? Has his Neuro prescribed anything? Wht is his preventative, and what is his abortive? There is so much that could help, but, we need you to take a big breath of air, and hang on! Please answer my questions and lets see if we can help get him-and you squared away. I just bet you're a wonderful supporter,,and that is a good thing............
We're here! PF wishes for your hubby Hugs to you both! Cathi |
Title: Re: Feeling helpless Post by Jackie on Sep 14th, 2008 at 7:51am
Oh, Sweetie.......The helpless feeling and frustration is hard. Standing by when a loved one suffers is torture in itself.
As has been said before, you are doing a good job. Educating yourself and advocating for you CHer is a huge help. You are here and that says a lot. Ask questions on the boards......who knows what might just help. I'm sure you all have a plan for when the beast attacks. If he doesn't want you right with him (some do, some don't) then try to find some 'busy work' for yourself. Stay close so you can hear if he needs you but busy does help with the anxiety and stress for the supporter. Try to console yourself with this...Clusterheadaches is not a terminal condition. I've said that to myself a billion times. It is said that it does not lead to other terminal conditions either. A doc told me this years ago and it helped.......some. You all must be worn out.....that's hard enough in itself. Fighting the beast takes a lot of physical and mental energy from you both. Rest when you can, Sweetie. Take a few minutes for youself......a short walk or bubble bath can do the trick. It will get better...hang tough and together you all can beat this. Try to enjoy the pain free time you have and don't let the SOB beast rule your lives or take center stage. He'll take everything he can from you if you allow it. Now...you and hubby go kick his ass!!!! Again....you're doing a good job....don't sell yourself short. Keep your chin up, Sweetie. We're here when you need us. Good Luck & BIG Hugs, Jackie |
Title: Re: Feeling helpless Post by flipperlips on Sep 14th, 2008 at 1:24pm
Hi guys. Thanks for your words of encouragement. My hubby does use oxygen. His regulator only goes up to 8 so we have to talk to his neuro about getting a different regulator. He has been diagnosed by a neuro. He is on so many meds. He takes so many meds. Depression meds, anxiety meds, stomach meds. He is on Verapamil and has Imitrex injectables and he also has Zomig. The weird thing about the Imitrex is that while it may take the head pain away he gets body aches and lockjaw. I know from reading many postings that this is not common. He has had CH's for 15 years with this past year being the worst. It seems to be getting progressively worse for him He hasn't worked since November 2007. He is in this vicious cycle of pain and feeling worthless. I can tell when it's happening. His left eye gets bloodshot and his left nostril clogs up. I have now put his O2 by the couch becasue that's where he spends a majority of his time. When he grabs for it I go grab the Imitrex. Then I ask him if he wants some coffee, a Mountain Dew or an energy drink. He has been crying more and more lately and it's because he says he's not taking care of me the way he should. He hates it that I have to go off to work. He's a classic, I'm the man and I should be providing. I reassure him that he does his fair share of the supporting because he is my biggest fan. I tell him all the time that it isn't about the income coming in, it's about supporting each other through the good times and the bad. He sometimes tells me to leave him because I don't deserve to have to live like this. I tell him that I love him and that I'm not going anywhere. There really is no one better suited for me than him. I just try to help him in anyway possible. Whether it be running for the O2 or Imitrex or leaving him alone. I could go on and on. I'm so happy that I have you guys for a shoulder to cry on. I shed so many tears that I don't let him see because I don't want him to know how much this affects me. I try to stay strong for him. It hurts so much to watch the one you love wiggle around in pain. My pain is so mininmal compared to what he goes through.
Anyway, enough boo hooing from me. My hubby is a verteran. We are going to the VA pain clinic in Ann Arbor on Thursday afternoon. He just went to the neuro there on Sept. 2 and they gave him Depakote and a lidocaine nasal spray. It's too early to tell on those. He used Depakote years ago and it didn't really help. Our next neuro appt. is Nov. 4. Thank you all for being here for me. You are truly a Godsend. I talk about it at work and with my family but know one understands. Jen :-* |
Title: Re: Feeling helpless Post by Cathi_Pierce on Sep 14th, 2008 at 2:54pm
Jen, So glad to hear about the headache clinic. I'm certainly not the expert on meds, but Linda Howell will be around soon, if not Jackie, and they will help you with that. please, however, take EVERYTHING with you to the HA Clinic....
The 02 is definitely not enough. That you already know. The rest, the way the Beast can infiltrate everything and destroy all the good.well, you both have control of that. It is not at all uncommon for a Clusterhead to feel hopeless/useless.however you wish to put it. fact is, the BEAST-Sleep deprivation-pain-fatigue-more fatigue-more pain is the reason. Around here, people learn to 'tough up"....Clusterheads are the strongest people on this earth! You both just need the tools to help you fight. Please read ALL the links on the left, Jen.......ask any questions you have, keep venting here-and TRY HARD, for now, to show a strong face to your man! Perhaps after a hit, you can tell him how long that lasted.remind him he got through it, give him a hug and a kiss whne he is ready for one, remind him you're there, and the beast will NOT change that. Please, also, take some time for you. When he's resting, take some "me time". A bubblebath, a good book, a nap, or, perhaps out to get a pedicure. You and your man are lucky to have each other....and I'll just bet you are a wonderful supporter! Do you think your man will come online? There are soo many here willing to help him cope.show him he is not alone, and share their strength with him. It would do a world of good! Jen, take another deep breath, now, and keep doing that. Someone's is always online here, so pleae, keep posting. 'I assure you, things are going to improve around your home........you've landed in the right spot! BIG, helping hugs to you both... Cathi |
Title: Re: Feeling helpless Post by flipperlips on Sep 14th, 2008 at 3:48pm
Thanks for the words of advice Cathi. Phil has joined the message boards and he spends a lot of time on here. I'm grateful that he did. Before I was the only one reading and researching and now that he's doing it too we can tag team this beast. I know there's no cure, but somehow someway we have got to find him some relief. I know that I've come to the right place. Supporters need support too and I know that I'm going to get that here.
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Title: Re: Feeling helpless Post by thebbz on Sep 14th, 2008 at 10:45pm |
Title: Re: Feeling helpless Post by thebbz on Sep 15th, 2008 at 11:33am
Ditto on the clusterbusters.
clusterbusters.com..........check it out. thebb |
Title: Re: Feeling helpless Post by flipperlips on Sep 15th, 2008 at 8:24pm
I do know that he shouldn't mix the 2 triptans. I learned that reading here. He got the kudzu and the rc seeds and we know that he needs to detox before using the seeds. What is the best way for him to detox? Should we talk to his doctor about detoxing? Will they help? I will help him through whatever needs to be done to try something different. Obviously what he's on know isn't helping him. I want him to have his life back. I almost feel selfish saying this, but I want our life back. I devote most of my time to caring for him and working. I will let you all know that I took some me time yesterday and took a really long bubble bath and read my book while I was soaking. It was absolute heaven :D
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Title: Re: Feeling helpless Post by Margi on Sep 16th, 2008 at 10:03am
Good for you for taking some you time. You're not going to be much help to him if YOU crash, so it's crucial that you take care of yourself as well.
Absolutely you should talk to his doc about detoxing, especially from the anti-d's. The folks over at clusterbusters are a huge help with detoxing instructions but a medical doctor should also be involved. And no - it's not selfish at all to want your life back. It's completely normal! That's another side effect of being a full-time supporter, honey - the guilt over the feelings we go through. You're not alone, my friend - we've all hit that same wall from time to time and the biggest help you'll find is knowing there really are others that have walked in your shoes and lived to tell about it. It's really all about team work - you and your man are the team, we fellow supporters are your cheerleaders and coaches. :) hang in there - you're doing a great job! |
Title: Re: Feeling helpless Post by flipperlips on Sep 16th, 2008 at 10:24am
Margi,
I thank God everyday that I found all of you cheerleaders and coaches. You all are truly a God send to me. I don't have anyone else to lean on but my new family here. I should rephrase that, I do have others to lean on but they don't understand what we are dealing with. You all do. I never thought that I could find so much comfort from people that I don't know that well yet. I'm hoping to get to know everyone more. Please keep the advice coming, I need all I can get. THANK YOU THANK YOU THANK YOU!!!!!!!! Jen ;) |
Title: Re: Feeling helpless Post by AussieBrian on Sep 16th, 2008 at 11:18am flipperlips wrote on Sep 14th, 2008 at 3:48pm:
What a delightful expression. Thanks, Flips, and all the best to you and yours. |
Title: Re: Feeling helpless Post by flipperlips on Sep 16th, 2008 at 12:54pm
Best of everything to you too Aussie.
I gotta tell you guys me and my man just had a really good talk. He told me that yesterday he went trex free. But, he just got a really bad visit from the beast. He sucked his O2 (even at his measly 8 lpm) and shot up with the trex. He also swapped his nose with the lidocanine. He's exhausted now, but I have to say I'm so very proud of him. He pushed through and instead of laying on couch in exhaustion he is up and about doing some work around the house. All of you that have responded to all of his posts (and mine) have really inspired him to not sit around and feel sorry for himself. I can't say thank you enough to all of you. I don't know any of you that well but I love you all. You are the most wonderful group of people and I'm so glad that you have welcomed us with open arms. I wish that we had found you all sooner. You are the true definition of family. No judgements and I love that. My family is full of judgements. I feel so at home here. Only 2 more days until we go to the pain clinic in Ann Arbor. :D Chat with ya'll later. Jen |
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