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Topic: Tell us something about your SUFFERER (Read 7753 times) |
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Margi
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Re: Tell us something about your SUFFERER
« Reply #100 on: Mar 17th, 2004, 9:47am » |
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Hi Cowboy - no you're NOT supposed to give up and neither is he. Clusters are not fatal, but they can steal your quality of life - that's for sure!! If you've had a doctor give up on you, then you need to give up on that doctor. Find another one. Or, if that's impossible, read everything you can about the "natural" treatments and keep fighting!
HAS your hubby been diagnosed to have clusters? You mention continuous pain - that's not typical of clusters, there are pain free breaks between the attacks. So, first, you need to know what you're dealing with. Take the cluster quiz on the left here. If it does come out positive, is there any way you can get him to try oxygen as an abortive? Know any welders that would let you try their oxygen tank? Could you get him to a firehouse to try their oxygen?
Hang in there, Cowboy - there is always just one more thing to try - never give up!!
Hugs
Margi
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Jackie
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Re: Tell us something about your SUFFERER
« Reply #101 on: Mar 17th, 2004, 11:27am » |
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Hi Cowboy,
Margi has given you some great advice....she always does.
Study the information here and on the OUCH site....buttons on the left. Knowledge is power when fighting this malady.
Clusters are terrible but they won't kill hubby and they can be managed. Hang in there and keep us posted...we'll do anything we can to help you all.
Hugs,
Jacks 
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Jamey_Coyle
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Re: Tell us something about your SUFFERER
« Reply #102 on: Apr 4th, 2004, 1:34pm » |
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Hi,
I'm new here! I live in Central Arkansas with my parents and siblings. My mom has suffered from what we now think are cluster headaches since October. We looked at information for cluster headaches in our health book, and mom has all the symptoms. I looked today, on the internet for more information and found this site.
When mom has what we call her "spells," she has said that the left side of her face starts to hurt, and then she kind of sinks gracefully to the floor. I remember a few days ago, I walked into the office of our house to answer the phone, and she was slumped over the computer keyboard. Honestly, this scares me every time it happens. She gets extremely hot and sweaty, and she goes completely pale. She also has problems communicating. Her speech is very slurred. I know when her color comes back and her speech is improving that she is getting better.
Sometimes, mom can bounce right back from one of these and be fine, but others have left her bedridden for a few hours. She had one early this morning, and she hasn't been able to get out of bed since. She's not very old, and this is very scary for me. I take care of her most of the time because my Dad is on the road for work alot, and I'm the oldest, so mom kind of likes to have me around. She wants me to be constantly around her every day in case she has an attack. She had three or four in one day, a few weeks ago. She has a fear of having an attack while driving, and a week or so ago, she started to have one in the car. Unfortunately, we were on a crowded interstate, and there was no place to pull over.
We have talked to a doctor friend of ours in Ilinois, but he is at a loss as to what this could be. I would like to talk to other people here who care for people and have to watch them go through this. I almost wish it could be me going through it, but then I know Mom would wish it was her.
Thanks for letting me tell a little bit of our story.
Sincerely,
Jamey
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Margi
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Re: Tell us something about your SUFFERER
« Reply #103 on: Apr 4th, 2004, 3:21pm » |
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Hi Jamey - so sorry your Mom is having a rough time. It's so scary for children (of any age) to see their parents in pain. You sound like a strong person to be able to take care of your mom and your siblings. Good for you.
What do you mean she 'slumps to the floor'? Is she fainting? Does she lose consciousness for awhile? Taking to her bed really isn't characteristic of clusters, neither is fainting. Can your mom take the quiz on the left, here? It sure sounds to me like you need to get the doctor to give her some tests and a firm diagnosis. Please let us know, ok? Pain of any kind is a signal that something is wrong somewhere. Please suggest that your mom push her doc for some answers, ok?
Hugs to you, Jamey.
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Jamey_Coyle
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Re: Tell us something about your SUFFERER
« Reply #104 on: Apr 4th, 2004, 5:57pm » |
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Hi,
My mom took the cluster quiz. It's a pretty safe bet that she does have cluster headaches. She also wanted to take the 30 question quiz. That told her that she had a sinus headache. She looked at the cluster traits, and she has all of those. She also looked at the Kip scale, and she saw herself in some of those ranges also. We even recounted some of the headaches she had had at the different levels.
There is a doctor who goes to our church. I think we're going to ask him about this and see if he can recommend a neurologist for mom.
We're not hypochondriacs. We're pretty convinced that this is the problem. We don't know why she falls, but maybe that is something else. She doesn't fall all the time, though. When she was driving, she didn't slump over. She just kept driving and hoping it would pass. She did turn the air conditioner on though. She about froze us all out. 
We do know that she gets the numbness, and gets extremely hot and then cold and then hot again. I guess with this kind of thing, everyone is different. She has the slurred speech, and on the Kip scale, level ten was depression and suicidal. She definately has had that.
But, like I said, we are going to get another doctor's opinion. We hate to go with things undiagnosed. I have had a health problem of my own that has gone undiagnosed and everytime it flares up, we don't know why it is happening. Doctors don't know what the probelm is, and that's the same thing that has happened with the doctor in Illinois. He doesn't know why this is happening. He got mom on some blood pressure medicine, but that really hasn't helped too much.
Sincerely,
Jamey
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Jamey_Coyle
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Re: Tell us something about your SUFFERER
« Reply #105 on: Apr 4th, 2004, 6:29pm » |
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Hi,
Mom and I were talking a few minutes ago, and she said I have been mistaken. When she feels an attack coming on, she lays down, or sits down because she doesn't want to fall down. The intensity of the headache is too much. After she has sat down or laid down for a little while, she starts to feel better and can resume life. She said she never loses consciousness, though. She just hurts so bad on the left side of her face that she has to sit down or lay down.
Sincerely,
Jamey
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Donna
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Re: Tell us something about your SUFFERER
« Reply #106 on: Apr 5th, 2004, 8:04am » |
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Hi Jamey:
Sorry that you and your mom are going thru this.
Like others before me have posted, it's time to look for a new doc....pronto. If he hasn't run tests (CAT scan, X-rays, maybe an MRI, to mention a few) then he isn't doing what he should be doing.
Does she have blurred vision along with that slurred speach, or any numbness of the body on the opposite side of the headache?
Almost all cluster sufferers go through these tests routinly just to rule out something else first. It's the smart thing to do as so many maladies mimic each other and can go mis-diagnosed.
Good luck with finding a new doc. Your mom doesn't have to settle for less then she needs. She should read what is here, get informed, and then take the initiative to insist on proper care.
You sound like a wonderful person to be so attentive to, and caring for your mother.
Bless you both,
Donna H
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breathe
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Re: Tell us something about your SUFFERER
« Reply #107 on: Apr 5th, 2004, 1:23pm » |
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I'm new to this so be gentle with me! My husband Jim has been told that he may have cluster headaches. What I've read on this message board and all of the other research that I've done convinces me that he does have them. Jim has finally stopped drinking!!! After me telling him that it is not good for him and his headaches! Now I hope to get him on the right meds. He takes vicodin, but they truly do not take away they pain. Butarbitol (sp?) helps but also does not take away they pain. I now understand about "shadow" headaches. But does Chinese food hurt. Or food with a lot of sodium? I could go on with questions so I will stop here. Any suggestions will help. Thanks Jackie a care taker with heart
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HypnoticFreddy
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Re: Tell us something about your SUFFERER
« Reply #108 on: Apr 5th, 2004, 1:57pm » |
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Please....read the links to the left. Very informative. Take the quiz. Read the Cluster Traits. Read the info.
You will be surprised how much information you can learn from these links. Then go to the OUCH Website. Print out the documents. Take this to your doctor, if you can.
Butalbital is a barbituate and is not really useful for cluster headaches. Vicodin is an opiate and is also not usually useful for cluster headaches. See the medical info. It will take you a few hours and you will become educated.
Just some advice
-Scott
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Margi
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Re: Tell us something about your SUFFERER
« Reply #109 on: Apr 5th, 2004, 2:43pm » |
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Hi Jackie,
Scott's given you some really good advice about narcs for treating clusters. They don't work! They just mask the pain and addict the user. Get your hubby to a cluster knowledgeable neuro and fast. Get him to try oxygen as an abortive and see if he's a good candidate for imitrex (it's a med that can't be used by folks with heart probs), and maybe verapamil.
And, yes, the MSG in Chinese food can act as a "trigger" for some folks. My husband can't tolerate it (MSG) when he's in cycle.
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kathy copelin, ch.com 8/8/06
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Jumjum15
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Re: Tell us something about your SUFFERER
« Reply #110 on: Apr 8th, 2004, 8:18pm » |
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My husband will probably never believe that beer is related to his headaches, and honestly, since he gets them almost every day, it doesn't seem to matter if he drank or not. I would love an excuse for him to stop drinking, though, but that will never happen.
I also worry that drinking almost every day on top of taking tylenol every day will destroy his liver, but I'm guessing he won't change his habits (not to mention the smoking and the awful eating habits) until something puts him in the hospital.
I've given up trying to convince him to take better care of himself, even if it just means being an overall healthier person willhelp him deal with the ha better. He thinks because he's a normal weight, that means he's healthy.
I'm sorry, I'm just really bummed out about this. The life insurance people put him in a really high-risk category, and we're still waiting for our copy of the test results. I'm sure that instead of changing his habits, he'll just try to have a fat-free and berr/tylenol free week (before they draw blood) and then go right back to trashing his body....
Sorry to be such a downer.
Oh, and we found out today that it's a boy!
-Ella
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mrs mac
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Re: Tell us something about your SUFFERER
« Reply #111 on: Apr 12th, 2004, 7:03pm » |
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hi guys!!!!
I'm Sandra from Scotland, usually post over the pond on the uk site, but thought i would pop in and say hello!!
My story is similar to all you guys in here, hubby had a horendous headache a few months ago, the docs here thought it was a severe sinus infection, gave him some anti biotics and went away, 2 days later he still wasn't any better, doc came back out and decided to send him to hospital, doc there said it could be clusters
Andy and i are still pretty new to all this, and the uk folks have been great, and i hope maybe to get some support from you guys too( goodness knows we need it too!!)
from the way his attacks are occuring i reckon he is chronic, though still waiting for a neuro appt to come through
that's my story so far
take care you guys
sandra
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minnie
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Re: Tell us something about your SUFFERER
« Reply #112 on: Apr 20th, 2004, 3:57pm » |
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HI guys sorry it's taken this long to post but here goes.I want to tell you about my best friend,love of my life father of my children and of course wonderful husband well, we'll just call him Billy J.  .I'm feeling sentimental today because of some anniversaries 9 years ago tommorrow Billy and I had our first date  .8 years ago today we said our I dos in front of family and friends   . (Billy's been whining abot it every since  ) Back then it was just the three of us Billy,Felicia( now 12 his daughter from first marriage) and me.Since then we've added April (7) and Beth (5).MY how time flies.
Now a brief history of his battle with the beast.his first cluster that he can trace back happened about 1987.
his nose was broke but thats not what really hurt him his REAL PAIN was in the exact area of his clustersnow.1993 was his next cycle.treated as an acute sinus infection  which he suppsedly had every 1-2 years .He went into cycle ? January 13th of 2003 and now is chronic  . HE found a great neuro.who works With him on treatments for both Clusters and miagraines. He can't take Triptans because of other medical problems so he aborts with O2 .His preventative is Verapamil.
Billy had the great oppurtnity to meet many of you at last years convention and this year we're hoping we can both go  .This sight & the family we have made here have been a Godsend.I don't post much but I always check in here and the ouch site.I laugh,cry, pray and send vibes as needed.Thank You DJ
for putting this all together so we have the info and support needed to fight the beast.I'm gonna sign off now just wanted to keep this thread going (thanks for starting it Ree). Billy's at work so going to spend time with the kids but I'm sending out hugs and vibes to all supporters and sufferers may we all see the demise of the beast so you all can be pain free................
Minnie
(sorry this so long )
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bubbarube
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Re: Tell us something about your SUFFERER
« Reply #113 on: Apr 29th, 2004, 12:52am » |
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Hello everyone! I found this site a couple of weeks ago Im still learning all the sites to look at and read. There is so much valuable information here, just alot of reading!! For someone who needs glasses gets tricking reading after awhile but Its worth it! My husband is the one with clusters, diagnosed 20 years ago. He has been to many Dr's. and on lots of meds. O2 never worked for him. We did the E.R. one time about 6 years ago on X-mas-evening. it was his 8th CH of the day and he was so exhausted he could barely hold his head up to bang it on the wall. And like I read from another supporter the ER has no idea what to do. The nurse had the nerve to tell my husband to slow his breathing down she said he was just making the pain worse and was going to hyper ventilate. Well needless to say after going through these damn things for 14 years, at that point he told her a few choice 4 letter words. Then the DR. ask me if he was a drug addict or drunk as he looked so bad. Thats when all hell broke loose! I ask if he even knew what the a CH was! His response was NO didnt know what they were! And he was quickly told {imagine me pulling your balls out through your ass} thats close to the pain Ron had felt for the 8th time that day and each CH that day was at least 1 to 2 hours long!! So Dr. gave him a shot told me it would kick his butt and he would sleep the rest of the night. Left hosp. got home slept 1 1/2 hrs. and bamn going for number 9. I have learned over the years better to keep quiet not ask ?'s let him talk or yell or beg or cuss and you just say what he needs to hear. We do alot of wet washcloths and I put them in the freezer and just let them get to the barely frozen stage and he puts it on his temple, when it cools off put it back in freezer and get a new one this works a little. I think it keeps his mind busy holding it in place, more than it taking the pain away but worth a try. Sorry so long didnt mean to rattle on. If I can be of help to anyone Im here. And I just want to give a big {THANKS} to all that post it really does help! Even us veteran supporters!!
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kim
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Re: Tell us something about your SUFFERER
« Reply #114 on: May 20th, 2004, 8:06pm » |
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my hubby randy also has clusters along with migraines at the same time, his dr has tryed everthing from varpimill to o2 no help , randy is starting a new cycle now the last one lasted for 3months with no breaks thanks to the migraines, when we first seen his dr we were told that very few people have both ch and migraines at the same time .randy cant stand light,sound,moving or being touched when they hit, no smell of anykind, i've heard about the ch dance randy has said in the past that thats how he has felt but with the migraines he can't do the rocking and all with out making the pain and upset tummy worse. me iam at wits ends its hard to explain to a 6 year old that they have to stay quite for months on end its hard for a adult to also.sometimes i feel helpless becouse i cant help
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Woobie
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Re: Tell us something about your SUFFERER
« Reply #115 on: May 21st, 2004, 2:34am » |
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Kim - please check your private messages.
(look at the top right hand corner.....)
Hugz to you, Kim..... We know how you feel......... stick around and read, read, and then read some more!!!
What other medications has your husband tried?
Maybe you should post in the Getting to Know You section - you'll get more responses there... but I'm glad you made it here...
Nice to meet you,
TIna
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kim
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Re: Tell us something about your SUFFERER
« Reply #116 on: May 23rd, 2004, 5:33pm » |
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Tina,
thanks for the reply.i will post all meds when i list them all (i have a dresser drower full ) sorryfor the misspelling.
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Ree
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Re: Tell us something about your SUFFERER
« Reply #117 on: May 23rd, 2004, 7:59pm » |
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Wow I cant believe all the posts since I first posted this thread..8 months ago... amazing... I'm sorry I havent been in here much these days to support... been searching for a little support for me. Sorry that sounds like a whine... I was accused of whining recently and boy will I ever be looking out for that side of me... I hate to be accused of that.........
All of the wonderful supporters here, there are too many to name. I am so proud of each and everyone of you and blessed to share your company.
I have noticed some new supporters here and I wish I could address all of you. ( or remember what I have read) All I can say is keep up the good work. Some of the sufferers written about here are my good friends and I feel relief in knowing that they have such caring loving support in their lives. To the other new supporters looking for love and support and not understandint this condition, please start a new thread so that you won't be lost in this long one. We want to know you and help you with strategies as well as better medicines to try. Each of our sufferers are different and tell a different tale. Those that I have met personally have different remissions if at all... some are chronic, some eposodic. We are all looking for the same thing for ourselves and our families. Help, support.......A CURE. God bless us all... Its not easy to ask for help for yourself. I will never accuse anyone of whining. Love to you all Ree
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NAB
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Re: Tell us something about your SUFFERER
« Reply #118 on: May 26th, 2004, 2:52pm » |
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My husband has been diagnosed with clusters and we just can not seem to find the medicine that will get him out of the cycle. We have tried Prednisone and now are on Lithium. It is soo depressing! I try not to let him know how I feel since I know that he himself feels soo bad. Doe sanyone have any suggestions for doctors that specialize in Clusters that are from Illinois?? Also any medicine that has worked?? And finally how are you supporters surviving?? I feel like I have reached my wits end. I am stubborn and refuse to go to the doctor for any depression medicine to help me deal with it.
Thanks for listening!
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firebrix
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Re: Tell us something about your SUFFERER
« Reply #119 on: May 27th, 2004, 1:53am » |
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Welcome NAB!
Sorry you had to find CH.com, but glad you did. There's a mine of information here. Look around the site, read, search and ask as many questions here as you wish.
I cannot help you with neuros in Illinois, but I am sure someone can - just look in again later and someone from the USA will have replied.
You don't mention whether or not your husband has tried oxygen. This is a safe and inexpensive treatment option used with great success by many on this site and there is a link to the best info you could get on the left hand side of your screen. Check it out and also read Roxy's post about O2 on the General Posts page. It is important to use a non-rebreather mask.
It IS depressing. No doubt about that! We all get bogged down in it at times, but read some of the posts from other supporters, remember that all we can do is what our partners WANT us to do, and do the best you can. Also take time out for yourself occasionally. Fill the bath up like Margi suggests, light the candle, pour in the bath oil, slip in, do absolutely NOTHING but lie there and indulge in nothingness a while. Supporters need to be strong and must gather their energy from time to time.
My husband and I worked out a plan of attack for when he gets hit. He told me what he needed, and I try to get it together for him. If he wants to be left alone, I leave him alone; if he wants company, I'm there in a heartbeat. I remind myself that no matter how bad my day seems, his is a helluva lot worse!
Let me know if I can help you in any way. So many people here helped me when CH first entered our lives and I have learned from them. These people are half a world away yet help is just an IM away. Amazing. Reassuring, and Oh so helpful.
happier days to you NAB
firebrix
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| « Last Edit: May 27th, 2004, 1:56am by firebrix » |
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NAB
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Re: Tell us something about your SUFFERER
« Reply #120 on: May 27th, 2004, 9:08am » |
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Hi Firebrix:
Thanks for your reply. He is taking oxygen however it only seems to work for everyother headache.
I try to take time for myself however whenver I come home and he is having a bad day I feel like I need to be there. I know that there is nothing that I can do but it just makes me feel better however it makes me feel bad also!!
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seannap
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Re: Tell us something about your SUFFERER
« Reply #121 on: Jul 19th, 2004, 5:48am » |
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Hope I am not intruding, but I just want to say to all you supporters that you are true angels.
Many of us sufferers would not be of this earth today were it not for you to keep us going: lending a gentle hand; a knowing look; a smile of encouragement... and a kick in the butt when we get havin a pitty party.
Sometimes, when I get an attack... I am not sure which hurts more - my head or the look of total helplessness in my loved ones face. It is not only the "sufferer" that is the sufferer. We all see it, and it is not taken for granted.
Thank you.
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Ree
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Re: Tell us something about your SUFFERER
« Reply #122 on: Jul 19th, 2004, 11:56am » |
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Thanks Sean-nap... Compliment taken and greatly appreciated... We have met wonderful people here and are quite thankful ourselves to be in such good company... Love to you and Pain free cozy nights to you too... Ree
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roosterred
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Re: Tell us something about your SUFFERER
« Reply #123 on: Jul 30th, 2004, 10:01am » |
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Hi, my boyfriend Rick has this thing they call cluster headaches, I call it madness!!! We have been together 3 years and the first time I seen him in the throes of one of these I really thought he was losing his mind. He started to cry and bang his head and rock back and forth. My first thoughts, " he is nuts " was all I could think of. Well they went away for about a year when a er doc told him to take Claritan-D. Well they are back and in full force I might add. Nothing seems to help him. I came across this site, thank you and I went out and got him Melatonin 3mg. This is his 2nd day of using this and he finally got about 4 hours straight sleep. He still gets the demon during the day 2, 3 times a day, but at least for now he can sleep some peacefully for the first time in a long time. He has suffered for about 17 years now. My question is why can*t these doctors help him?
Thanks for the advice and understanding. No one deserves this torture and god willing a cure can be found for all who suffers from the demon.
Carla
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Jackie
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Re: Tell us something about your SUFFERER
« Reply #124 on: Jul 30th, 2004, 6:43pm » |
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Hi Carla......welcome to the boards.
There is help out there. I would suggest that you read and then read more. Check out all the buttons on the left. There is a lot of very good information on the OUCH site (another button on the left). Educating yourself will help you help your boyfriend and is your best line of defense when fighting the beast.
It's a sad thing but many doctors have no idea about cluster headaches and some that know haven't a clue on how to treat them.....so you've got to learn and then find a good doctor to work with your boyfriend. You can be a big help in this area.
I've been married to a chronic for years....you can have a life and things are manageable. It does take some work though.
Good Luck to you and please keep us posted on how you all are doing.
Jackie
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