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Brooke
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I am a new supporter!
« on: Apr 16th, 2002, 11:00am » |
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Hi. I am a new supporter. Well, not really a new supporter, but new to this site! What a great idea! I hope I can vent and get replies, and make a few friends, here! My fiance, Andy, has been suffering from Primary Chronic Clusters for five years. We have been together for the last two years, and we are getting married in three months! I love him so much, and want nothing more than for him to feel better. I feel like I do a pretty good job of being there for him in his pain. I hold him, and love him, and just tell him I am there. It just seems like there should be something else. It's not fair! Sometimes, I do really well with that, and others, I am just waiting to get to work to start sobbing! None of Andy's friends understand, which has pretty much left him with no friends, and my friends don't understand either. One of my friends even told me she felt like she did because she woke up with a hangover one day, and her head hurt really bad. Sweet thought, but it ended up making me feel more bitter - she caused that headache - Andy does nothing but live and breathe, and he is in constant agony! It has gotten to the point where we don't leave the house much, socially, anymore. Movie screens are a trigger, as well as the Theater. Alcohol is a trigger, so no bars or clubs (or friends to be with). Andy feels guilty and scared to leave the house. I don't know if anyone else has this problem, and would love feedback, but Andy twitches (almost seizes sometimes) with his headaches. No doctor has been able to tell him why, only that he shouldn't be doing it. The twitching causes Andy to be scared and embarrassed in front of anyone but me. Doctors are no help in general with this, and infact, he's been denied every claim sent to insurance company, leaving us with several thousand dollars of medical bills to deal with, on top of dealing with the constant pain, the missed work, the stress of money because of missed work, etc. I know that this is going to be my life for the rest of my life. I made a commitment to him, but I know I am going to need help sometimes with this! I hope this site provides the help I need! Thank you for listening! Brooke
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Margi
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Re: I am a new supporter!
« Reply #1 on: Apr 16th, 2002, 11:11am » |
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Hi Brooke,
Welcome to the funhouse. It sounds like you're already doing a fabulous job of supporting Andy through his pain. I've never heard of the twitching, but hey - I'm sure folks' bodies can react differently to that much pain. Poor guy. Has he told the neuro about this? When you said seizures, it made me wonder if he should ask his neuro about Topomax. It's primarily an epileptic drug but we have seen some success with it for chronic clusterheads here. Just a thought.
Also, if you click the OUCH website button to the left, and find the menus about the map - check out our Family Services team. We're in the first menu - it's a place for supporters to understand what we all go through. We also have a supporters email addy if you'd like to talk, vent, whatever off the board. We're at clusterbuds@hotmail.com, if you ever need a shoulder. One of our team is usually around.
Hang in there.
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Brooke
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Re: I am a new supporter!
« Reply #2 on: Apr 16th, 2002, 11:48am » |
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Thanks for the reply! I am not positive, but I think we have tried the Topomax. I know we have tried a few epileptic meds. His neuro knows about Andy's twitching, but says that he doesn't know why he is doing it, and just says he shouldn't be twitching. We got a brainwave scan last year, showing nothing. The lines jumped when he twitched, but it wasn't brain related (sorry I can't explain better, I am not a medical person!). We actually cannot go back to the neuro anymore. Andy's insurance won't cover it anymore, and the price for a visit is out of control. We want to go back, but we need to pay off the current medical bills before we start adding to them again! He can do phone appointments only for $80, just to get new prescriptions for his meds. So frustrating! But, Andy is actually going through a phase where he is sick of meds, and has been gradually decreasing the quantity! Also, very frustrating! Thanks!
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Greg_A
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Re: I am a new supporter!
« Reply #3 on: Apr 16th, 2002, 10:58pm » |
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Hey Brooke-- has he tried oxygen therapy? I have been severely chronic for 7 yrs now and my doc just prescibed me oxygen.
It is pretty much a last resort thing since nothing else has worked except imitrex injections. And you cant get enough of those. (they worked real good for me)
Anyway, have him try to get O2.
I just started it monday and i have aborted every HA since.
Good luck
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Ted
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Re: I am a new supporter!
« Reply #4 on: Apr 16th, 2002, 11:37pm » |
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Your posts really touched me. As a matter of fact more so that you actually stuck around from the start when he was chronic. Most people just split on you. the fact that you stuck around back in the early and non-commital "dating stage" and continued to get to know him and didn't just say "I don't need this shit in my life" says a lot about you as a human being. The fact that you're still with him and are engaged knowing the pain you'll have to watch and go through yourself watching, and there is no ulterior motive there to boast to others how generous you are (I know of some who do that too) but are genuinely there as a caring, loving partner... that is just so rare. It's quite Margi-esque. Anyway, I wanted to let you know it is very impressive.
Now, to other parts of your post. Does he start twitching or are there points where while in his severe pain there is a sudden smash of a harder pain. that happens to me where I'll be getting hit hard and suddenly I'll get a jolt 10X harder that makes my entire body jolt back. Like I was suddenly whacked with full force by an aluminum baseball bat in the midst of the pumelling I'm already getting. It makes my entire body jerk, which is quite appropriate as I am a jerk. But I was wondering if he twitches or if it's in shocks of repetetive pain that he reacts like that.
I understand how it feels not having the social life that was once there. It's not forever though. You, more than he, needs to remember that. As a sufferer, I'll tell you you get accustomed to that and have the constant fear of getting hit while you're out, so in an odd way, it is more readily accepted. I'd imagine (and please don't take this wrong because it could sound like I'm saying 'you don't understand' when I'm not saying that) it is much harder for a supporter to accept it. Even a real one like you are. We live in the fear of getting hit and if we can be in a place that we are used to it, have some comfort with it, it will make it somewhat easier. If we are in a strange place, or worse, out in public where a lot of people can see you in an attack, that tends to make the ordeal worse. Um, back to what I was saying. It won't last forever. I went for a long time getting hit no less than 5X a day and decided I couldn't go out in public anymore for more than a couple of hours at a time, and only that much if I was within a mile from my house. Late last summer I started getting some relief, I entered a light cycle meaning a day with no attacks or no more than 3 per day (that was the range). the psychological impact was there for a few months that I wasn't prepared to call it anything but a "fluke." Everyday I expected it to come back full force. By December I finally believed the coast was clear and it wasn't a fluke. I better summarive here quickly because suddenly I'm sounding like one of those people who post to pretend they are offering support when all they are doing is whining about their own life (I told you I was a jerk) So, anyway, the point of telling you this all is to whine about my own life, which ain't too bad, actually. But the real point is to let you know while the going-out-and-doing-things part seems over and impossible now, that's just now. It should come back. In the meantime? Come here and cry when you feel like letting the tears flow from watching him. Scream and yell when/if his temper is short and he takes it out on you. Complain when there is a movie you wanted to see on the big screen but it comes and goes and you were sitting home with him, helping him. Completely utilize the people here who can help you deal with the utter horror you have to go through as a true supporter.
I'm sure there are other points here that I wanted to address that I haven't. But I've rambled on enough. Thank you for showing us that there are still some people we haven't met yet that give a shit and are willing to care.
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Margi
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Re: I am a new supporter!
« Reply #5 on: Apr 17th, 2002, 10:06am » |
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Awesome post, Ted. And you wonder why we supporters love you clusterheads? I don't.
And, you're not a jerk. Far from it. In fact, I think you might even be an anti-jerk.
Awesome post. Did I say that already?
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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kathy copelin, ch.com 8/8/06
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Brooke
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Re: I am a new supporter!
« Reply #6 on: Apr 17th, 2002, 10:11am » |
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In response to Ted - You can't possibly be a jerk, because your response made me feel so good! Thank you so much for your words. They encourage me, and will continue to! I met Andy and fell in love with him almost instantaneously. He is my other half, and I can't deny that for a headache! My mother was very concerned at first, but she loves Andy so much, and wants to help him as much as I do. Also, I have arthritis. I was born with it, and while it is not debilitating at this time, it could be one day. I would hate it if someone chose not to be with me because I have arthritis - it's just not a good reason to me, to not be with someone - make sense? Hope so! I understand exactly what you are saying about my whole social life issue. I know he lives in fear of being attacked while out, or in front of other people. It breaks my heart. But, you are right, it will all come back around. And if it something very important to me, he really, really tries hard, and that breaks my heart even more. It makes me feel selfish, and I don't like feeling that way. We have successfully made our home a place that we enjoy very much. We have games we play, a big tv (we are addicted to television!), a wonderful dog, and a really cute cat, who both can make us laugh with a playful look! The lack of friends is the worst part, though. Neither one of mind that we are probably not going to be able to relive our youth by seeing ET again on the big screen. But, we would like to entertain at home. Andy loves to cook, and he usually makes a lot more than either one of us can eat, and we just wish we had people to have over for dinner, or an at home movie, or something like that. It's frustrating, but not the end of the world. I guess I made it sound like a pretty big deal in my original post, but we deal with it pretty well. If he wants to be at home, I usually want to be with him. But, sometimes, I go out with my friends, too. Which is good, because I need that, but I feel guilty, knowing that he would love to either join me and my friends, or wish that he had friends of his own to hang out with while I am gone. He never makes me feel bad for leaving him for a while - he is wonderful to me, but I can't help feeling like a bad person for ditching him - especially if we know it's going to be a rough night for him! As for the twitching thing he does, what happens more specifically, is that starting when he wakes up in the morning, he will start to twitch here and there. Sometimes, it's a full body twitch, sometimes it's just an arm or a leg. Sometimes, it's actually more of all his joints popping and cracking at once. His neck gets most tight, and he pops his neck several times a day (not good, but he feels like he has too, and I can't argue, because it certainly seems like it needs it). Throughout the day, the twitching gets more constant - it happens more frequently, and his neck will need to be popped more. At the point in the day when his neck will not pop anymore at all, he knows the headache is about to hit. Within minutes, everything starts at once - his twitching becomes very rapid, as the headache starts to come on. Sometimes, we are lucky, and he will only twitch a whole lot. Others, the twitching increases badly to the point where his whole body is lifting off the bed/floor/couch wherever he is. I can't get near him at that point, because he doesn't have control of his body anymore, and he flails pretty hard, and certainly doesn't mean to, but sometimes I get whacked pretty hard. His chest tightens up a lot at this point and he has a lot of trouble breathing. Once he actually lost the ability to breathe entirely, but luckily that was only one time, and we hope that it stays that way. It could be his body just reacting to the pain, or it could be the stress of yet another headache that causes his body to tighten so hard, and then contract. We don't know. He stresses very easily (we are working on that - he feels guilty a lot for missing work, or missing plans, etc. causing him to stress himself out more than I think he should). His chiropractor says he has pinched nerves in his neck and shoulder, which makes sense, but so far no relief from the adjustments and the muscle work he does. We can only hope with time that we make some progress in that area. We have both accepted the headaches, but we are really hoping that we find relief from his twitching, as we think/hope that it will make the headaches easier to manage, and live with. We try very hard never to lose hope! We shall see! Sorry this was so long! I meant to keep it short! And thank you so much again for your words! They meant a lot!
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Darleen
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Re: I am a new supporter!
« Reply #7 on: Apr 17th, 2002, 6:09pm » |
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Hi Brooke,
Welcome home! I say that because I am also a supporter and honestly feel like this is my home and my family. Everyone here is awesome as you have already seen in the responses that you have received. Sufferers and supporters alike - we are all here for each other and I certainly feel better knowing that there are others somewhere out there that know what I go through as a supporter and what John (my hubby) goes through as a sufferer. You are an incredible person and your soon-to-be husband is lucky to have you by his side and I'm sure he knows it as well. I know how you feel when you say all you want to do is make him feel better - it seems so simple but it is so hard.
Please stick around - the more support we all have the better.
Lots of love to the both of you,
Darleen
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EM
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Re: I am a new supporter!
« Reply #8 on: Apr 18th, 2002, 12:52am » |
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Hi, I'm new to this new form of site. At one point, I read this message board daily. My husband and I rarely got in on the exchanges because Idon't get what some people are talking about. Also, sometimes when we did reply we'd get lots of nasty messages back. I feel safer writing to the supporters. Ours is an ongoing saga. My husband is one of the unexplainable "chronic" daily sufferers. He has gotten on the best medicine regime for him to cope with life at the Diamond Headache Clinic. The newest issue of the National Headache Foundation newsletter has a big story on cluster headaches. It's very good. I will be sending it to his insurance company, who is talking about ending his disability. Since his case is "rare" it's often hard for people to believe it is believable. He often on cluster headaches for about 6 years and now it's been chronic for about four years. There's good info in that article about not delaying treatment, so it does not become chronic. Our story is a nightmare with my husband with several other health issues that have been caused by the myriad of medications that he's been on. If your partner is sensitive to meds, please have the doctors go slow. My husband got Peyronie's Disease and cyst on his kidneys from using Sansert. After it happened, he was told this "sometimes happens." I think all men should know about this. He is slowly recovering from that. It's taken three years! He's passed out, fainted and driven off the road from various medicines he was on -- Depakote made him collapse several times. He had a horrific reaction to a combo of Phenergan and Norgesic Forte that put him in the ER that led to something like seizures. He had a reaction to what they gave him in the ER and was put on a ventilator. We still are working with a speech pathologist to rebuild his memory after that nightmare. The ER here had such a poor understanding of clusters that I finally hired a Patient Advocate and went in and talked with ER director and eventually the vice president of the hospital. (He had five ER admissions prior to this. All of them rough ordeals, but the last one was the worst.) let me tell you as a supporter -- life changed for both us when he was hooked up to the ventilator and they asked me to bring in a copy of our Living Will. All this has been really, really hard. Sorry, this is so long. But I want to say this is why it was so hard when we got nasty replies on the general message board. I don't say this will happen to your loved ones, but I wish someone had warned us. We thought life was hell with the clusters. I'll tell you it's even rougher with multiple medical problems on top of the clusters. Through the work at Diamond Headache in Chicago and local caring doctors, he's finally at a place where he can drive on a limited basis and have more of a life again. You supporters know. You have to be an advocate, not just a supporter. I go to most of his doctor appointments and even visited for an hour with his dentist before he had any work done. Dental work can be excrutiating for the cluster people and since my husband can't handle most anesthesia, we had to come up with a plan. He consulted his doctor, etc. before any work began. Well, enough ranting. I love and support you all. I've been reading your messages for years, but feel I will stick to the supporters section. Thanks,
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East Coast Clusterhead
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Re: I am a new supporter!
« Reply #9 on: Apr 23rd, 2002, 9:35am » |
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It is refreshing to see someone as supportive as you. Us clusterheads sure are happy to know there are people like you in this world and that there are clusterheads out there getting loving support from people like you. You and all supporters are true heros.
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kim
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Re: I am a new supporter!
« Reply #10 on: Apr 23rd, 2002, 10:28am » |
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All of you wonderful people who love a person with cluster headaches, I just wanted to say that as a sufferer who is also loved and supported by my husband, the family is victimized too. It is an illness that imprisons the entire family. You are all so strong. My best wishes to all of you.
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Ree
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Re: I am a new supporter!
« Reply #11 on: Apr 25th, 2002, 11:09pm » |
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Welcome to the family Brooke and may I add Ted that was the most incredible post. You really put your self out there and I know that can't be easy to do. You're not a jerk at all. You are a wonderful friend.
Brooke, when we first found this site. I was in search of a cure for my husband Dave... Dave and I were dating when I first witnessed a CH and thought to myself "I finally find a guy that likes me and he is going to die of a brain tumor." We had gone through several cycles where we would get the wrong information. Dave would be stubborn and not give up drinking when in a cyle. He contemplated suicide a few times too.
When I did find this place, the relief I felt was so immense I cant even explain it to you. Although Dave isnt chronic, and is pretending he doesnt know what CH is when he isnt in a cyle, I know he too is also thankful for this site and the wonderful people, armed with archives of knowledge from past experience. Because we found this site Dave asked his doctor for a preventative Neurontin... He also stopped drinking, for that cycle anyway. (I was so proud) and he had the shortest cycle since I have known him. 10 weeks vs the last cycle that was 7 months long. He also learned a few tricks to use with imatrex. The water treatment and about 02.
Any time you feel like venting feel free to email me... Ree16angel@aol.com. I am usually on the computer a few times a day, I am learning graphic art. You can IM me Ree16angel or Reespirit99. Good luck I will be thinking about you. ~~ree~~
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MaureenG
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Re: I am a new supporter!
« Reply #12 on: May 24th, 2002, 6:18pm » |
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Better late than never! Belated welcome to Brooke.
It's great that you found this site. Hopefully by now you have realized that this place is a blessing on those difficult nights. I am also a supporter and many of your feelings are exactly how I feel with my boyfriend, Steve. We have been together for 1 1/2 years, and he is still expecting me to give up and walk out one day. I agree with your point about your arthritis, although I don't have any illnesses to speak about, I would hope that if I ever had an accident and was in a wheelchair the rest of my life, Steve would still be there for me.
Leaving is not an option. I love him and his pain is my pain, although it affects us differently. (I made a previous post that if clusterheads get their names because clusters cause pain in their heads, then supporters should be called clusterhearts.) Anyway, it is definitely a struggle sometimes, but when it gets too much to bear, I come here. When Steve is in the middle of an attack and wants to be left alone, I come here with my "family". Although I am still pretty new to the site, everyone is very warm and welcoming. This way, I am still close enough if he needs anything.
Soon you'll be reciting the words we live by....in sickness and in health.
It is very difficult not being able to make plans. There are nights we do go out, but it's usually alone, because we can't make plans ahead of time with anyone. Spending time with your friends is a good thing. Andy probably feels better that he is not standing in your way of having fun. I think he would feel more guilty if you always stayed home with him. I also prefer staying home with Steve most of the time, but I do spend time with family and friends. With his crazy sleeping patterns, it usually works out that he's sleeping while I'm gone anyway.
Well, if I haven't scared everyone away with my rambling, I hope EM is still around the board. I'm sorry that you've had a bad experience posting messages. I hope you'll give it another try. There are times when things get a little heated, but everyone here has a good heart. I've gotten so much out of this "family", I don't know what I would do without it. Even supporters need supporters.
Well, I've done enough rambling for now, on to my next post.
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NotH20
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Re: I am a new supporter!
« Reply #13 on: May 29th, 2002, 10:08am » |
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Brooke - hello and welcome to this wonderful ch family - both for sufferers and supporters. I have had ch's for over 22 years and I can tell you from my personal experience that a great supporter always makes the cycle better - just by being there for us.
You mentioned losing friends due to this beast.....think about it Brooke - if they left becuase of a headache were they TRULY friends in the first place ???
I understand from my own personal experiences the fear of leaving your house and being hit somewhere in public....but you cannot allow the beast to win over Andy...he deserves to live life to it's fullest.
I hate the fact that you have such extensive medical bills - know that feeling all too well....but there are many things you can try and do. Do as much research on this board and on the OUCH board that you can so you can be prepared with a list of questions during your $80 phone consultations. Maureen is correct - Topomax is an anti-seizure med - but also try Keppra (it's newer than Topomax and maybe fewer side effects). Also try a round of Prednisone for a littel "vacation" from the beast - maybe that will help Andy get a grip on things. You didn't mention Imitrex injections...but I have been known to drop my pants and inject my thigh no matter where I was at the time  Scary thought, but I cannot let this beast win over my life. These can be extremely expensive, so if your having a problem with your insurance, check out some previous posts. Someone posted that Glaxo will help with your insurance company and/or samples.
I have to tell you that supporters like you are sometimes hard to find. I have a great supporter and would be totally lost without her - especially during a cycle. You keep up the good work....us clusterheads need you!
OK OK OK - you twisted my arm  if Andy really wants to cook for someone - just give me a date and time - I'll bring the whole family with one BIG hungry belly. ;D
Keep the faith Brooke - you are surely starting out on the right foot.
NotH20
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