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Topic: Tell us something about your SUFFERER (Read 7669 times) |
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HannahFroukje
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Re: Tell us something about your SUFFERER
« Reply #50 on: Nov 16th, 2003, 2:12am » |
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HI!
Here's a Dutch newbied, not a sufferer but a supporter, I posted something on the general forum, but then I saw this section. Will not repeat myself on all stuff I wrote on general, but just a few details here.
Hubby is the one who "has them". Unfortunately, he is "blessed"  with a severe form of episodical cluster headaches, when I look at the kip scale on this site, I would say 9-10's all the time, and 6-8 each day when he's on his peak. 
You may shoot me, but I'm a person who says  DARN, there SHOULD be something we can do about this. He had already tried all medicine in the book, only imitrex works for him.
When someday I visited my own doctor for something minor, he said to me: "Girl you look like hell, what's up?" and I told him my boyfriend (he's got another doc) has cluster headaches. He said  that's not good. He asked me just a couple of questions and said here, have him try this, and he handed me a little sachet with a few white crumbs in 'em, homeopathic stuff. So I said: "Oh , okay, couldn't hurt could it". So I went home, hubby was in a sort of coma after his last attack and I could not wake him up to take these tiny globules. So I just slipped them into his mouth and left for work.
The whole day I didn't hear a thing of him and worried sick what he was doing, usually he calls me after each attack, so I SHOULD here something every 3 hours, but nothing this time. I even tried to phone him, he didn't pick up the phone. I went home early .... to discover him still SOUND ASLEEP. I was going like  how's this possible? He slept for 13 hours in a row. The next night he got only one mild attack, we slept through the rest of the night too. I called my doctor to ask about these homeopathic stuff and if I could give it again. He said go ahead and gave me some more. It helped ONCE more, again he slept for a long time. Then it obviously stopped working , called back, doc said that unfortunately this is often the case, that remedies work, but not long.
But HEY, it DID work! I was so baffled that I thought, this is something I want to know more about, and signed up for a school that would teach me more about regular medicine, but also about homeopathy and herbs and stuff. I've been trying to get hubby to a good homeopath that would treat him, but always remedies worked only temporarily and eventually they gave up on him. Then I went on myself, trying to solve the mystery, because I'm the one "on top of it all", so I can watch him closely and see what a remedie does. Sometimes we had succes, and we get a few really quiet days, sometimes it does nothing. I strongly feel as if I should continue researching this and TRYING to find the answer to why remedies only work temporarily. On that subject I've made some progress too. I've been reading my books for nights in a row, staying awake because I WANT to find the key to this question!!!!!!! I HAVE To! I WANT to be able to help more CH-patients in the future, if only one, it would be worth it.
Now where we are now. Hubby and I are in week 6 of his cycle. The last three days have been really good, because I found the next remedy that worked for him. Unfortunately yesterday and tonight it became clear to us that this remedy as so many other is NOT the one key to unlock all mysteries, because it's gradually coming back, last few attacks were 4 hours apart so it's only a matter of time that he will be on 3 hours apart again  . I spent all evening reading yesterday evening, and came up with a possible next remedy, he took that one hour ago.
We learnt to deal with hopes and fears a lot better by now, and learnt to take these few days without any attacks as a pleasant gift, and learnt to deal with the fact that then the attacks are coming back. Hubby just takes what I hand him, he's the perfect guinea pig  (well I should mention that I do thorough research on remedies before I give it to him, and I'm extremely carefull in what I pick, I don't want to run the risk of making things worse!). He's very much in favour of natural medicines, because in his case they grant him a few moments of rest with no side effects and his body can clean up a bit from too much imitrex!!!
If there would be anyone among you who is really into herbs and homeopathics, I would just love to get into personal contact with you and exchange ideas and views we could all benefit from, perhaps not NOW, but in the future.
I really hope that someday, I will have this mystery unraffled, well, homeopathically spoken that is, and I will be able to help out SOME CH-patients. This time has not come yet, but I hope it will! Therefore I'm doing my thesis on CH, and I'm busy developing a questionnaire, which is based on the questions a homeopathic doc will ask you when you go there for help. This together with other questions based on having CH.
Keep up the good work supporters! They NEED us, we have to try to make life easier on them.
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Tiannia
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Re: Tell us something about your SUFFERER
« Reply #51 on: Nov 26th, 2003, 4:19pm » |
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I wish that my husband would come here and talk to you all. I think that it would do him a lot of good to be able to talk about what we have had to deal with since mine started in July. With 2 little kids at home and both of us working full time, I wish I could find a way to make these things go away. I know that mine are not constanantly as heavy as many of the ones who get hit on the board, but I also know that he hates not being able to help. And that it makes him angry as well. I know that I have closed off at times during these damn things, because I hoped that I could ease the stress on him and the kids if they did not have to "deal" with me, but I think that that just made it worse. At this point, I have had 12 days PF since July. But I am not really being treated at this time either, as my insurance changed and I have to "show" the DR that I get hit everyday.
Hannah, I have been trying herbal remidie to try and at least lessen my HA's each day so that I can continue to work. (My luck to start a new job and my first HA's were in July, I still dont have sick time). It has helped a little, but there are some things that I think might work better and I can not get a hold of the herbs to make it. So anytime you want to brainstorm, I am open.
Tiannia
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AlanG
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Re: Tell us something about your SUFFERER
« Reply #52 on: Dec 1st, 2003, 4:45pm » |
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Hi All, Im a cluster sufferer but my wife isnt. we just recently broke up and I think that the breakup had something to do with me being crabby, not being able to sleep at night, sleeping in a chair to stay up right, so i wasnt sleeping with her. My life feels really messed up by this medical problem and i dont know how to approach her to get her involved with you folks. I know alot of our problems have come because of the way this CH has affected me in more ways than just pain. Could someone please take some time to contact her and get some info to her about what its like to live with someone who has CH. I think if someone does she might be able to see the reasons why we have problems in the family. her email address is mgeisdorf@yahoo.com my email address is alangeisdorf@yahoo.com.
Thanks in advance for anyone helping out. AlanG..new member
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Margi
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Re: Tell us something about your SUFFERER
« Reply #53 on: Dec 1st, 2003, 5:14pm » |
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Hi Alan, I'm VERY sorry to hear about you and your wife.
I know this is none of my business, but as a supporter.....I'd rather hear the info from my husband, than from a complete stranger. Don't you think your wife would feel the same?
Why not just e-mail her the link to this website, and also to our Family Services Team (the link is at the bottom of my post here.) There is a "panic" button at the Family Services Team that will put her in touch with other supporters via email if she does want to talk about this. Not one among us would mind talking to her, I guarantee you that, but it may ruffle her feathers a little if we approach her blindsided like this.
Just my opinion....and you know what they say about opinions. 
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AlanG
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Re: Tell us something about your SUFFERER
« Reply #54 on: Dec 1st, 2003, 5:19pm » |
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Thanks margi, maybe your right , Im new here and didnt know about the family support thing, I will try that route and send her a link to this site. Thanks Much, and thanks much again for supporting us and not turning your backs on us. we really do need understanding people who look out for us as at time we are so immersed in pain our world stops.
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Margi
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Re: Tell us something about your SUFFERER
« Reply #55 on: Dec 1st, 2003, 5:26pm » |
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good deal, Alan, and ...just so you know? If YOU ever need a shoulder, there is always someone around here.
It's commendable that you've asked for support for your wife - VERY commendable - but I want you to remember, it's available to you, too. OK?
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Ree
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Re: Tell us something about your SUFFERER
« Reply #56 on: Dec 1st, 2003, 7:27pm » |
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Ditto from me too Alan... sorry for your troubles... you can maybe give your wife a few addresses to contact if she would like Im at Ree16angel@aol.com... she is welcome to write to me. Good luck and God Bless... ree
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TxBasslady
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Re: Tell us something about your SUFFERER
« Reply #57 on: Dec 2nd, 2003, 1:00am » |
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Such a shame......CH affects more than just the sufferer. 
I am sure that the supporter's that post here are of a very small percentage of actual supporter's that exist world wide. The larger percentage have no knowledge of this site.
However, the supporter's we have here are the most dedicated folks I have ever known. But it takes some knowledge and understanding of CH, in order to be able to give this great support to their sufferer.
I am a sufferer/supporter. Currently I am pf.....but choose to support those I can. I have had the pain....and I have had the support. Therefore, I KNOW what the pain is like, and I KNOW what a toll it takes on family. Understanding is of great importance. Without the understanding, it is difficult to give the much needed support that a sufferer needs.
This thread, started by Ree, is full of real honest emotions that supporter's feel for their sufferer. This thread alone should give a real insight to someone who has difficulty supporting.
As you know, Ch affects each of us sufferer's differently. We are all individuals, and the same things don't work for all of us. So, certainly, it is understandable, that it would be the same for our supporter's. They support according to what the needs are for their sufferer. Therefore, the support, while being given out of love for their sufferer, is also a bit different. Without the knowledge and understanding of CH, this becomes a difficult task.
Jean
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DONNY/LORI
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Re: Tell us something about your SUFFERER
« Reply #58 on: Dec 17th, 2003, 1:32pm » |
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So happy I found this site. My husband Donny 39, has suffered with CH for 25 yrs. We have been married for 10 yrs. They have gotten worse every year since we have been together.
I am very angry  with the Neuro's that we have seen. No help don't know what they are looking at and won't look at anything we print for them. We went to see a new one yesturday she gave him imitrex and steroids told him to keep taking the lithium and oxygen also up'ed his elavil to 50mg a night. Any idea what the steroids are for? Seeing as she was to busy to explain.
We were told that they may oneday just go away, do they? Do they get worse and then go away or just stop suddenly? Do the meds prolong the cycle?
Any answers?
Lori
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Paigelle
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Re: Tell us something about your SUFFERER
« Reply #59 on: Dec 17th, 2003, 2:00pm » |
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on Dec 17th, 2003, 1:32pm, DONNY wrote:
So happy I found this site. My husband Donny 39, has suffered with CH for 25 yrs. We have been married for 10 yrs. They have gotten worse every year since we have been together.
I am very angry with the Neuro's that we have seen. No help don't know what they are looking at and won't look at anything we print for them. We went to see a new one yesturday she gave him imitrex and steroids told him to keep taking the lithium and oxygen also up'ed his elavil to 50mg a night. Any idea what the steroids are for? Seeing as she was to busy to explain.
We were told that they may oneday just go away, do they? Do they get worse and then go away or just stop suddenly? Do the meds prolong the cycle?
Any answers?
Lori |
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Lori, the steroids are prednisone and sometimes will break a cycle of headaches. The first time I took steroids, it broke my cycle and I didn't have another cycle for 2 years. This time I took the steroids and the day after I finished my last pill, the headaches were back.
From my understanding, sometimes the headaches just disappear. I usually have a cycle every one to two years. Always in November though. So there is hope that it will stop, but there is also a chance that it will be back. But you can't think like that. Good luck to you and Donny.
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DONNY/LORI
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Re: Tell us something about your SUFFERER
« Reply #60 on: Dec 18th, 2003, 2:50pm » |
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Thany you. I don't have alot of time to check e-mail. normally only while I'm at work.
The dr only gave him enough for 5 days. Do you think that they will come back? He only had to very mild maybe a 2 or 3 this morning. Said he still feels pressure behind that eye.
I did finally get Donny to sit down and read about the shrooms and we may try this for his next cycle. From what we read it's best to start as a preventative.
Lori
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daughterDL
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Re: Tell us something about your SUFFERER
« Reply #61 on: Dec 19th, 2003, 10:30am » |
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My name is Amber, daughter of Donny and Lori. I am 20 years old. I have never really seen him get a really bad headache, but the other night I overheard. It broke my heart!!  He is such a loving and wonderful person. But I am sooooo happy they have found a site where people actually know what he's talking about.
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rivergirl
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Re: Tell us something about your SUFFERER
« Reply #62 on: Dec 23rd, 2003, 12:55am » |
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on Sep 16th, 2003, 1:06pm, Ree wrote:--------------------------------------------------------------- -----------------
We all know each other but some of us have been here so long we forget detail. Can everyone add something about their sufferer. First name, eposodic or chronic, how long, treatments ? What works? Maybe we can help some of the newer people, as well as refresh some of the old information.
I'll start this~~ My name is Ree, my husband Dave is a sufferer of Eposodic Cluster Headache. We have been together for 15 years. Dave has been suffering since his mid 20s he says so, about 20 years. Before we started dating he didnt know what was wrong with him. After several docs took a look at him and several trips to the ER where docs would think he was just looking for drugs. Thinking I finally found a guy that loved me and he was going to die of some weird brain ailment, I finally found a physician that knew his stuff. He then sent us to a great Neurologist in Wellesley Massachusetts Dr L. Dana Dewitt. She has tried many treatments in the course of time that Dave has been her patient. More recently (past 2 cycles) Neurontin as a preventative and it seems to keep the attacks tollerable til peak of the cycle. His most recent cycle started on July 1st and is hopefully over. He has been pain free 6 days. Dave also had some great results with 02 this cycle and found that if he treated the shadow that comes after an attack he has longer pain free periods in between. I am interested in mentoring if any new supporters need an ear a shoulder or I should say eyes to write to...ree16angel@aol.com I also suffer from Chronic Migraine (not the same but still pain without the years of remission in between) thanks Ree oh I should also add in case your wondering Dave doesnt type so I have been his fingers on this board for the past 3 + years...
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rivergirl
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Re: Tell us something about your SUFFERER
« Reply #63 on: Dec 23rd, 2003, 1:11am » |
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Hi My name is Vicky and My husband is Clint, he has gone ten days with what we now know is cluster headaches. We have had one night of no headaches and after nine days, I feel so helpless. This has just started we have been to ER twice and finally got an appt with his primary. What a joke. I tried to tell them what i have read on this subjest and they refuse to listen to me. WHile my poor husband of 3 years is suffering and theres nothing for me to do. He was back in the Er today and they gave him a shot of toradol and a stronger presciption on fiorcet. Which he his chewing because by the time the pill works the headache is gone.
I tried to tell them to give him somthing inhalant to take care of the pain and they refused. So I guess we will see what happens tomorrow at his doc appt. We have tried heating pads, and tennis balls but i don't have the strenght to push hard enough. if anyone can give me some advice i would so appriciate it. As you can see it is after midnight and iI don't want to go to bed and wake him.
We are tired and exhausted and want this to go away. ahis father died at 48 with a brain anurism and we thought history had repeated itself so we have had a cat scan and all was clear. can these headaches lead to strokes or anurisms. I thank you for listening and I know I sound paniced and I am.
Thank You agin and will read everything that comes my way.
Than kyou dee for answering my e-mail and letting me vent. I was so scared.
Vicky Kratz
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Jackie
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Re: Tell us something about your SUFFERER
« Reply #64 on: Dec 23rd, 2003, 5:45am » |
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Hi Vicky and welcome to the board.
I too am married to a clusterhead.
My best advice is to read all you can (buttons on the left) before the doctor appointment.
Most clusterheads need a preventative medication and an abortive medication. Many take verapamil and sometimes combine it with lithium. There are many but those two seem to be the most common. Oxygen therapy and Imitrex are the abortatives of choice by many. There are others too...like Zomig and Maxalt.
Pain killers/narcotics are of little use....some say NO good at all for cluster headaches. We have found narcotics to be useless.
Ch hurts like all hell but is not terminal and does not lead to any other terminal conditions (that is the current information)
Good luck and let us know how you do with the doctor.
Jacks 
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WKU_lady
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Re: Tell us something about your SUFFERER
« Reply #65 on: Dec 23rd, 2003, 9:38pm » |
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Well, this is a first for me. I've never been in a chat room, if this is what you call it?! My husband of 18 years has had cluster headaches for at least three years. He is a chronic sufferer. We frequent the emergency rooms at least 2-3 nights a week. He gets 125 of Demerol and 75 of Phenergan every time. He has gotten to where now he tells the docs what will work. They sometimes won't give it and look at him like a "druggie". He has lost his job, is on disability. We owe out our butts for medical bills and still have no cure or anything that helps except the shots in the ER. He has been to the Diamond Headache Clinic in Chicago, two weeks to be exact, with no relief. I'm at my witts end, don't know what to do with him or myself. Please, I'm desperate, I'm going nuts here and I'm sure my husband is too. I'm worried now that he is hooked to the drugs because even when his headaches are not as severe as some of the others, he still goes to the ER. He has tried just about everything. Where does a person go from here? I'm not sure how much longer I can hang on. I know that some of you sufferers are thinking I am a cold-hearted bitch but after a while, it takes it toll on a marriage and family. Anybody else out there going through what I am? If so, please, let's talk. I need some advise, reassurance, or something.
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BlueMeanie
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Re: Tell us something about your SUFFERER
« Reply #66 on: Dec 23rd, 2003, 10:26pm » |
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WKU lady,
You mention nothing about any of the drugs your husband gets to stop cluster headaches except O2. Is he doing it right ? Check the Oxygen info to the left. ALL the drugs you mentions DO NOT stop cluster headaches.
Any narcotic drugs just either knock you out so you don't feel the pain or just make you high so you don't care about the pain.
There are very few, if any, people here that have CLUSTER HEADACHES that take narcotic drugs you describe.
Has your husband tried IMITREX, & Amerge to abort a CH ? There are about a dozen preventive meds to help keep them from coming too. Spend a bunch of time reading all the info you can.
Good Luck ! Sending PF vibes.
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CLivingston
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Re: Tell us something about your SUFFERER
« Reply #67 on: Dec 31st, 2003, 10:10pm » |
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Hi, my name is Cherie(42) and DH is Tom(50). We've been married 17 years and he has suffered with cluster migraines for most of our marriage.
Tom has cycles of clusters, usually 4-6 times per year lasting 7-10 days each, with up to 6 migraines per day. Initially, we followed the same route that many of you have by going to our family Dr. His only solution was to administer narcotic shots that DH hated because they would only knock him out of his head, not get rid of the pain. This treatment lasted for almost a year, culminating in our Dr. refusing to give him any more shots because he suspected Tom was just a junkie
I was heartbroken when my family Dr. of 20 + years said those words to us ... if only he knew the excruciating pain associated with DH's HA's! Ultimately, his statement freed us from his mistreatment
and misunderstanding of Tom's HA's and we felt we needed to search elsewhere.
I don't remember how or who referred us to Tom's neuro and I wish I did so that I could thank them from the bottom of my heart.
We made the first appointment and upon meeting the doc we knew we were in the right place. He took my 6'7", 250, somewhat shaggy looking (longish hair and long full beard) master carpenter SERIOUSLY when Tom told him of the unbearable pain. He finally gave us a name to call the evil monster - "cluster headaches". The Doc told us that there were many treatment plans we may have to try before finding the right combination and he was right. We (I keep saying "we" because we're in the together!) ran through a relatively short list of meds before we found what we believed to be the perfect combination - Sansert as a preventative and Imitrex or Zomig as an abortive. He used this combo for several years, and although many migraines "broke through" the preventative Sansert, he was able to stop them with Zomig or Imitrex tablets.
God forbid - for some reason we found we were unable to get Sansert anymore and the frantic search was on once again. That's when Verapamil entered the picture and it worked for months ~ until THIS cluster Tom is currently in. My prayer is that his Doc will either up his Verapamil dosage or have another trick in his magic bag.
The current cycle has been brutal. When DH gets a headache, sometimes he, as he describes it, "hears the train coming". Other times, the headaches just appear full force with no warning. The pain in reflected in the deepness of his wrinkles around his beautiful eyes. All I have to do is see "the face" and my heart starts fluttering, my soul starts aching for him, and I know there is little I can do but be handy with the meds, help him in and out of the multiple cold/hot shower combos, and try to pry him off the cold tile in the bathroom and back into the bed.
We have one small, slim ray of hope - Tom's older brother stopped having the migraines around age 50, and Tom turned 50 two weeks ago. Our most fervent prayers are that Toms will begin to fade away also.
We are very fortunate in the Tom is self employed and determines his own hours; therefore the HA's effect only his pay for days missed, not his livelyhood. On the flip side of that golden coin is the tarnished silver side of our health insurance - purchased privately and with a $2500 deductible annually - very little help in paying for these very expensive medications. Just in the last two days we've spent $300 on imitrex injections, and will likely top $1500 before this cycle is over. Does anyone have any suggestions on how to get his medications cheaper? We're fortunate that the Doc's office gives us some samples, but honestly DH runs through those in a matter of days.
Thanks for slogging your way all the way to the end. I'm so grateful to have found this board and look forward to coming back often.
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TxBasslady
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Re: Tell us something about your SUFFERER
« Reply #68 on: Dec 31st, 2003, 10:58pm » |
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Hi Cherie,
Welcome to the board!
Did you read any of the info in the links on the left of this page? One is "imitrex tip". Some sufferers swear by that info. You should read that one for sure.
There is tons of info here on this site. You will not find a better group of support folks anywhere!
Sorry that your hubby suffers with these terrible ha's.
I am a sufferer/supporter. I have been pf 113 days, due to a Prednisone taper. However, I certainly can vouch to the fact that CH is the worst pain I have ever endured.
Read all you can here......and read the posts. You can go the the regular message board, and read those posts and learn alot from what has been posted.
Hope your hubby finds the relief he needs. Feel free to come here anytime. Usually someone here 24/7.
PF vibes and best wishes to you and your hubby...
Jean
p.s. I see you are from Baton Rouge....we have some great folks here from Louisiana. Sufferers and supporters.
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Re: Tell us something about your SUFFERER
« Reply #69 on: Jan 2nd, 2004, 6:29pm » |
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Hi, this is boom boom. I am married to toader who has developed cluster headaches just recently. His started for the first time this December and they have hit him hard. We were lucky to get in the headache clinic 3 weeks into his cycle and get him on meds. Unfortunately, I don't think the meds have done much for him, he has just gotten worse. Of course, I don't know maybe they have made it better than it otherwise would have been! He is now in the sixth week and finally this week he was able to get some sleep at night and his attacks are more tolerable and mostly stop by oxygen. He has had only one imitrex shot this week, so I think he has started to get better. I am assuming the headaches increase in the intensity and frequency as the cycle goes on and start to get better as the peak is over. Is that a good assumption? He is such a gentle soul and it hurts me deeply to see him suffer so much. The moments that he has been pain free, he has been playing with our nine year old and working so hard to be in good spirits. I see this as a total life changing experience for all of us. At the moment all I pray for is this cluster to end soon
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CLivingston
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Re: Tell us something about your SUFFERER
« Reply #70 on: Jan 2nd, 2004, 7:14pm » |
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Thanks for the warm welcome TxBassLady - you aren't by any chance on Toledo Bend are you? We sold our camp on the LA side a few years back and sure do miss it!
boomboom - the onset of Cluster HA's has been a life altering event for our family. Tom tries his best to not let them interfere with life but most times that is just not possible. Our children have learned that at any given time their dad may be stricken and that it's not within his control, nor his fault. We've learned to adjust accordingly, appreciating the events that aren't marred by clusters all the more.
Unfortunately, one of our daughters suffers with regular migraine headaches, so she is extra compassionate when her dad has them and that helps them both.
FWIW, Tom is now taking a steriod for 5 days to interrupt the cycle and it is working - PRAISE! PF for two whole days now.
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Happily married ~ 6 children through step, foster, adoptive and biological ages 11-25. Four out - two more to go! lol
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KarenT
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;)Re: Tell us something about your SUFFERER
« Reply #71 on: Jan 2nd, 2004, 7:41pm » |
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Hi, I'm Karen. Haven't been here in a while but here goes. (Big, Deep breath........)
My hubby, William, has suffered with episodic CH since he was 16 years old (he's 38 now). His father and brother suffered similar headaches but have never been diagnosed. He wasn't diagnosed until his early 20's, but before then, he says he was convinced he had a brain tumor. We've been married for almost 9 years now and I did not find out about the CH until 4 or 5 years ago. He hid it very well. He cycles about every other year but has managed to miss the last cycle. I have no idea what's up there- but I'm not complaining! 
As some of you know, I'm an RN (I just quit my job in the ER 'cause I got tired of trying to make a difference and nobody else giving a darn-but enough about me), but I knew absolutely NOTHING about CH til I got here. Gosh, it's been so long, I can't remember how long it really has been.
William's last cycle was, I guess, 3-4 years ago and we were at our wits end not knowing what to do. His doc called him in an outpatient shot for Nubain and Phenergan and 15 minutes later he got another of Stadol and Compazine. Now mind you, he's standing in the hallway of the ER banging his head on the wall and the people I worked with looked at him like he was insane. When we left, he was drunk with a headache.
The next night, the CH returned worse than ever. I got in touch with his doc and the next morning she got him a referral to a neuro in Nashville,TN. This guy gave William a Medrol dosepack ( low dose prednisone) and Verapamil. That worked for 3 days. Then one night William sat straight up in the bed and said "Did you hear that?" He swore it sounded like someone had hit a gong over his head. That was a Friday.
That is what brought me here. I was scared he was gonna kill himself (and he was a police officer at the time so he had the means) and came here pleading for help.
On Saturday, I called the on call neuro, Dr Alfred Callahan, in Nashville. This man talked to me for over an hour. He got William on Prednisone 80mg for 5 days, then 60mg for 5days, 40mg for 5, 20mg for 5 and finally 10mg for 5 days. He increased the Verapamil to 240mg daily and told me to buy some over the counter Zantac and Tums. The Tums were to replace the calcium lost and the zantac to prevent ulcers from the prednisone. He laughed about the medrol dosepack and said it was only good for rashes and poison ivy/oak. I asked him if CH was his specialty. He said, "No, but I grew up watching my father have them." I couldn't believe our luck. A doctor who knew exactly what we were going through.
We, and I stress WE, have been painfree since the end of that treatment. Thank God and the miracles of science.
Knowing all these folks with CH were here on this website was one thing for William, but the get- together in Nashville really blew him away. For the first time in his life he knew he was truly not alone. We met Dave and Leesa, Jayne, Jonny and several other people. I was sick and couldn't hear a thing anyone said but the look on my husband's face said it all.
And in the words of one of my favorite Southerners (real or otherwise-LOL)--- "and that's all I have to say about that." 
Okay, Leesa. Your next. I'm calling you out girl. Don't make me drive the 2 miles to kick your hiney!! You know I love ya!
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TxBasslady
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Bass fishin' is a h00t It's the catchin' that sux
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Re: Tell us something about your SUFFERER
« Reply #72 on: Jan 3rd, 2004, 1:45am » |
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Cherie,
Just so happens I actually live in Texas, but I do have a lakehouse on Toledo Bend. On the Louisiana side, about 13 mi north of the dam, in the Chetwood Subdivision.
Bought it in 1995.........
Were you guys close to there????
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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anniebrook
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Livin' on a prayer
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Re: Tell us something about your SUFFERER
« Reply #73 on: Jan 6th, 2004, 1:25am » |
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Hi my name is Annie and I am new here. My husband Dave is a clusterhead. His HAs started about 14 years ago before I knew him. They were very sporadic at first from what he says but in the last 4 years (we've been married for 3) they have gotten progressively worse.
He too was misdiagnosed over and over with sinus problems. I found this site while searching about headaches a little over a year ago and we finally were able to go to the doctor and say "This is what he has. This is the treatment that we want to try." And the dr. was great and worked with us. Dave currently alternates between Imitrex 20mg nasal spray and Migranal nasal spray as abortives. The Migranal seems to be the most effective but makes him a little drowsy so he only takes them at night. We have also found that O2 works like a charm but haven't been able to get him any since his doctor left town and his new doctor hasn't seen him yet. Until Feb of '03 he was eposodic but after a car accident in Feb he has become "almost" chronic. I say almost because sometimes he goes a week PF and then other times it's 4-6 Kip 10's a day. Right now it's one a day (about an eight) BUT we are trying something new that seems to be working so we're keeping our fingers crossed. What we discovered last week has us hopeful and maybe it can bring some hope to others too. Dave's brother and father are diabetic but Dave and his sister are hypoglycemic. We have found that anytime his blood sugar level drops, it throws him into a CH. If he's able to drink a little OJ and then do about 10 minutes of aerobic exercise (like running in place) and then just relax, the HA stops and disappears with no drugs! He's eating several small meals a day now and snacking before bedtime and today he was PF for the first time in months.
We both realize that we may never get rid of these monsters entirely and at this point he says he'd be happy to just go back to being eposodic. At least then we knew to stock pile meds and be ready cause it was coming. We're not going to stop trying to find a "cure" tho.
God bless all of you who support a clusterhead. I know what a hard road it is to travel and even tho I haven't posted here before, I've been reading and know you are some incredible people who have given me and Dave hope and strength when you didn't even know it.
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TxBasslady
CH.com Alumnus
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Bass fishin' is a h00t It's the catchin' that sux
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Re: Tell us something about your SUFFERER
« Reply #74 on: Jan 6th, 2004, 2:29am » |
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Hi Annie,
If you have been reading here on the board for a while, then you already know what it's all about.........
HOPE.........for a cure
STRENGTH.....to endure
I am a CH sufferer/supporter......I am currently 119 days PF (due to Prednisone taper). However, very recently, while at a meet & greet, I had the unfortunate opportunity of seeing a fellow CH'er get "hit". It was truly a heartbreaking experience for me. Even though I have suffered the pain of CH.......I was NOT aware of the impact the ha's have on those who witness the pain and suffering. It really opened my eyes to the full impact Ch has on our lives........whether we are the sufferer......or the supporter, definitely CH alters our existence!
This site holds a very special place in my heart. The sufferers and supporters here are the greatest folks in the world.
They will help you thru the bad times, and support you, even when they, themselves, are suffering. So much love and caring......
Please hang in there for Dave. There's nothing better for a CH sufferer, than a great supporter. I know it takes alot of love and patience. But surely, you will be rewarded tenfold .
My best wishes to you and Dave.......and hopes for lots of PFDAN's.......
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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