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Topic: help!!My Mom!! im worried!!! (Read 388 times) |
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WorriedDaughter07
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help!!My Mom!! im worried!!!
« on: Aug 10th, 2003, 12:14am » |
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My Mom has had clusters for longer than the 15 years that i have no idea what she feels when she has these! I feel so useless and helpless and i want to cry. My parents are divoreced so i am at my Dad's sometimes when she has these but recently they have been coming on very hard! She has been having about 5 a day... and they are REALLY REALLY bad... and i dont know what to do. 
Just last week she had one as bad as i have EVER seen her have one. You see i was home and i saw her walk in with her dark sunglasses on (one sign) her head down (sign 2.) and her walking wierd (sign 3.) I knew she was having one and so i quietly walked up to my room. All of a sudden i heard this hude "BANG!" my Mom had fallen down the stairs. I didnt know what to do, and as you all know most likley talking to someone who is having a cluster is basically useless. My mom is a very head-strong women and i have NEVER EVER seen her  , but for the first time my mom was crying! i WAS SOO SOO SOO SCARED!
i AM VERY sensitive so for me i was crying and almost couldnt breathe i was so startled. The problem was that as you probley know you cant see well or talk.. or think while having these things.... and so here i am watching my mom trying to do soething for her and all of a sudden she tells me to find some new glasses because she broke hers while she fell down the stairs. So im crying running artound my house trying to hurry to find some sun glasses and while im doing this closing all the blinds and stuff treying to help. When i finally find a pair i run down the stairs and give them to her and she gets up out of her chair and is going out the garage door! I knew she was heading for the car and i was so so so scared! I knew she couldnt barely see and had very little moter skills and she is getting in her car, where she might kill herself or someone else! I begged her not to leave and she did!
I called my step dad and told him what happened and he went looking for her. For three worriesom hours i was calling every hospital, her doctors office, family, and friends, and no one had seen her. My step dad was out looking for her and i was calling all over thinking i would never see my mom again. Finally my fourth hour in crying she comes in the door and she is still having one, though it wasnt as bad. I was realived but still scared because i felt helpless and stupid for crying because i wasnt even the one who was or could even understand feeling this pain that she was feeling. I was sad, depressed and scared.
My MoM is very involved with her work in which she started a little over a year ago. She wroks 24 hours and is building a wonderful reputation. Right now she just got new territory which will help her a lot but the problem is with this new territory she is also getting more and worse clusters than ever Before. I am very scared of being homw while she is having these knowing i cant do anything. I cant drive her to the hospital (the hospital cant do anything anyway. they barely know what clusters are.)  and she wont let me call and ambulence because she cant afford it! SO i am caught in seeing my mom go through agginizing pain for hours on end sometimes! it kills me inside.
I worry about my mom being alone but yet i hate being the one to be around her when she is having them. A couple of years ago she had a mini-stroke and i am worried she will again. She is very stubborn my mother! She wont quite smoking and drinking coffee and she is very very active! I just dont get why she would get these. She continues to work.. and wont give up and she is under a lot of stress. I dont even think her immatrex works anymore because of the fact that it seems as she is becomeing ammune to it! And not only that she needs about 3-4 a day, and she can only get like 8 a month~ !! 
I really wish someone could find something to help my mom ... i really do because not even hospitals can do anythig if they even know what a cluster is! And i am very scared and worried and wish i could figure out something to do for my Mom.
Please... someone i beg you to read this and talk to me. I cant talk to my mom very well and she doesnt know how worried i am. PLease email me back or something.
Jessie a worried 15 year old daughter.
???  ???
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| « Last Edit: Aug 10th, 2003, 12:14am by WorriedDaughter07 » |
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firebrix
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Re: help!!My Mom!! im worried!!!
« Reply #1 on: Aug 10th, 2003, 4:08am » |
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Greetings Worried Daughter07
and Welcome!
Sorry you are so worried about your Mum, but look around the site - although the pain of CH is probably the worst pain one can imagine, it in itself doesn't kill anyone.
Your Mother is dealing with the pain the best way she knows how and she is lucky that you care so much - you help her and have found this site. Now sweetie, you just have to get her to read it with you where she will find the assistance she needs. There are so many helpful, kind people here who have all the skills needed for dealing with CH and are only too willing to share that info. Try to get her to join this site and the OUCH site - both have so much that will help your Mum.
It sounds as though your mother should see her doc. or a good neuro who understands CH and can help her.
Good supporters don't nag - they quietly suggest these things when the time is right - like, NOT when she's in the middle of a headache but when she can listen and take on board what you are saying. If we are well informed by reading everything on the sites about CH we learn there is little for US to fear and we learn skills for helping our CHers.
We supporters all stick together and help each other so you, too will learn ways to empower yourself and help Mum. We all have cried and felt as you do, helpless and inadequate, but we just do the very best we can, and help our CHers the way THEY want to be helped. Mopar says that having someone there who cares is such a help! Anyone with CH knows there's nothing anyone else can do - your Mum knows you cannot actualluy DO anything to ease her pain, but knowing that there's someone there who cares about her will help more than you realise. Let her handle it the way she does - after all she's had 15 years experience, comfort her and make her a cuppa when its over. Mum's biggest concern will be hiding the pain from you cos no-one wants to hurt their kids!
We have to be tough, we supporters! Tough, calm and strong. That helps our CHers - and it helps us to become stronger, better humans. Panic is for sheep! ( much as I like the woolly little no-brains!) We must also remember to laugh and have fun!
Hey. I'm here if you ever need any help, or just want to chat about this. IM or Email me! I've learned a few skills now! Soon you'll be teaching me more!
Lotsalove and let us know how it goes.
firebrix
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Miss_Deleny
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Re: help!!My Mom!! im worried!!!
« Reply #2 on: Aug 10th, 2003, 8:17am » |
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I'm so sorry to hear that you have to go through this at such a young age. I know that it isnt easy for some of us that are alot older
Firebrix basically said it all ... read everything that you can on this site and others and get your Mom on here as well and have her read. There is a ton of information out there that will make both of you understand a little more about CH and what can be done for them .. what kind of meds are available. The people here are very understanding and knowledgable in dealing with and helping those that are having the "headache's".
I also agree with Firebrix that your mother does need to get to a nero that understands what CH's are and that can treat her with meds that might be of more help to her.
As far as you are concerned ... being there means more to your mom than you think. There isnt anything that you can do to stop the pain from happening but your support for her will help her deal with it better. Trust us, we as supporters know what its like seeing our loved ones in pain and knowing that there isnt a thing that we can do for them other than be there for them if they need us It tears our hearts apart! But we have to be strong so that they can be strong as well.
~April~
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Margi
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Re: help!!My Mom!! im worried!!!
« Reply #3 on: Aug 10th, 2003, 9:22am » |
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Hi Jessie
I'm so sorry that your mom is hurting so bad, and that you are too.
Firebrix (the lady above who answered your post) is a wonderful supporter and she gave you some really good advice. All the way from New Zealand!!
There really isn't much you can do to stop your mom's pain, sweetie - we ALL feel totally helpless when someone we love is hurting. I hope you can find strength in knowing that YOU are not alone in YOUR pain. There are lots of us supporters here who know EXACTLY how much it hurts your heart and how frustrating it is. Also, your Mom isn't alone with HER pain either and it might really help her to come to this website and talk to others who feel what she goes through. Sometimes folks with this kind of pain think they are alone - but there are hundreds of others here, just like her. Tell her, ok?
And, Jessie - please click the link on the bottom of my post here. That's our Family Services Team and there is a page there for kids. I wrote it more for younger children, but you might get something out of it too. Read all of the pages and feel the strength we are sending you to be able to cope with what your mom goes through, ok?
Please write to me if you need a shoulder ANYTIME. I'm at moxie_miss@hotmail.com and I'm a supporter too. My husband has had these terrible things for more than 20 years. I'm also a mom, so if you need a hug, I've got an endless supply.
Hang in there, kiddo - we're right there with you.
Hugs,
Margi
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ksmiggy
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Re: help!!My Mom!! im worried!!!
« Reply #4 on: Aug 22nd, 2003, 6:43am » |
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Hi worried daughter,
i think it has all been said above, just remember this site is here, if you are ever not sure what to do, come on line, get as much help and advice as you need, i know it is hard, but you have to realise that the best way to help your mom is to support if asked( nothing worse than constant " are you ok" during an attack), it is best not to try to talk to her or really do much whilst she is having an attack( i have been told i can be very curt/rude when spoken to during an attack, i don't mean to be), be there to pick up the pieces after. When your mother is not having an attack, tell her you want to help, direct her this site, the relief of finding others with the same condition is quite amazing, plus all the free advice. Some of the advice may help, some will not, everyone has their own little differences with CH. As for the extra work, i have often thought stress plays a part in attacks, might be worth looking at, but most importantly , get your mother to a dr. if the immitrex is stopping working, it is a sure sign of over use, a dr. could advise her on that.
??? thought it had all been said, might've said it again, hope it helps, good luck
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cootie
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Re: help!!My Mom!! im worried!!!
« Reply #5 on: Aug 24th, 2003, 11:45pm » |
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Hello WorriedDaughter07....so sorry you have to go thru all this. Am wondering if any of the other 'triptan meds' simailar to imitrex would work better for your mom and maybe she switch off with them and get on a different program......should check the meds section to get the info cuz I am jus a supporter and not a nurse or doc. Also alot take verapimil daily with imitrex you mite want to read up about or ask the doc about. Hate to see your mom continue to fight this with meds that no longer work and suffer and put you thru all this also. I'd sudjest she visit a neuro or the doc again to explain her situation and maybe get switched to something that works better. It's no fun watchin em go thru this I know........good luck to you and keep us informed how things are goin ok ! Pam that thinks all this is very sad
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thatwasmyskull
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Re: help!!My Mom!! im worried!!!
« Reply #6 on: Oct 9th, 2003, 12:51am » |
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Hey worried daughter. Consider this. Your mom has a daughter who loves her, and that's worth more than anything. The fact that you came here is proof. If your mom doesn't frequent this site she should! I'll let the experts tell her all about the treatment options (Tried oxygen?)... Listen to Margi... She was here for me when I first arrived, and she's a great supporter... Remember, the clusters can't kill her, OR YOU! They just hurt like hell... Hang in there both of you, there is much hope with new meds on the horizon all the time! I was pain free for 2 whole years till my cure quit working... They'll get it figured out, then we'll alllllllll be sleeping like babies... TIll then!
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