Author |
Topic: Husband at the end of his rope (Read 469 times) |
|
pgmrslkj
New Board Newbie
I love YaBB 1G - SP1!
Posts: 3
|
 |
Husband at the end of his rope
« on: Mar 8th, 2004, 11:53pm » |
 Quote  Modify
|
I have been on this board a few times over the last 4 years. My husband's headaches are little different than most and so usually when I get on this board people start telling me that he doesn't have CH and then I get mad a stay off for a while. If he doesn't have CH then I don't know what the h*ll he has. I never saw supporters corner until now. My husband is having a horrible week. He's been in so much pain he has been talking about ending it. I am very afraid. I guess we still don't know what kind of headaches he has. He has been told by 5 Nueros that they can not do anything for him. That they have tried everything they can. You see nothing, and I mean nothing, gives him even the slightest relief. And believe me he has tried it all. We sat down and made a list and there were over 20 medications he has tried. Most made them worse or did nothing at all. Sansert did seem to decrease the frequency and DHE has broken a cycle once. But the DHE only worked the first time and we can't buy Sansert anymore. Imitrex, o2 and the usual things they talk about on this board don't do a thing for him. The doctors now seem to just want to give him pain medication because nothing else works and I think his Dr would rather see him addicted to opiods than commit suicide but even the pain meds. (demoral, morphine, and actiq)have not helped this week. The pain was too intense. The medication will force him to sleep but he keeps waking up in pain.
He just turned 30. He has been unemployed for 10 months now. He had to leave the military because of his headaches, in the 4 yrs since then he has lost 6 jobs to too many absences from headaches. He has not gone a single day without headaches since they started about 5 yrs ago. Some days he'll have 20-30 HAs and other days he'll have 2 then yet other days he will have 1 HA that lasts all day like a migraine. Sometimes he gets nausea sometimes he gets aura which I understand are not CH signs. Other times they are like classic CH. Sometimes he gets the running nose and watering eye and sometimes not. Sometimes his face will go numb for days, sometimes he goes completely blind or exremely blurred vision. These headaches have destoyed his life and mine. He is afraid to go to sleep. But other times they hit him in the middle of the day anyway. I don't know what to do anymore. I hold his head as tight as I can against my chest as he rocks back and forth at the end of the bed and he is just realing in pain. I keep saying "it will be ok" But will it? How can he continue like this? What do I say when he is ready to give up? How can I give him hope? How can I help him to not feel useless? He is really depressed about not being able to support his family and take care of his girls. (We have 2 girls, 7 yrs & 2 yrs) He just wants a normal life. He keeps asking me, "why is God punishing me?" He really believes that he has done something to deserve this. He can not take antidepressants. He has tried 4 (prozac, elevil, efexor, and zoloft) and they have all made HAs worse, and he won't go to a therapist. I am so scared that he is going to kill himself. I don't know what to do. Please, someone tell me that it will get better.
|
|
 IP Logged |
|
|
|
TxBasslady
CH.com Alumnus
New Board Hall of Famer
Bass fishin' is a h00t It's the catchin' that sux
Gender: 
Posts: 3201
|
|
Re: Husband at the end of his rope
« Reply #1 on: Mar 9th, 2004, 2:00am » |
Quote Modify
|
I wish I could say that it will get better....but I do not have the knowledge or ability .
Some of his symptoms appear to be CH. However, it seems that he possibly has something else besides CH going on.
Has your hubby had a MRI? That may help, if it is something other than CH. There are several folks here on the board that suffer from CH, CPH, and Migraines.
Unfortunately, it appears that your hubby has not received a correct diagnosis. This is a common complaint from alot of CH sufferers. CH affects such a small percentage of people, alot of dr's are not knowledgable about it.
The most important thing is that you and your hubby are not alone. There are many folks here on this board.
I would imagine that all of us, at one time or another, have considered ending it all. However, that is not the answer. There is a dr somewhere that can help your husband. Correct diagnosis is imperative! An MRI should be a priority.
I know that I am not giving you the answers that you so desperately seek. I wish I could help you more.
I see that you live in South Texas. Where in So. Tx do you live? I am in the Houston area. I asked because there are some good neuros in Texas.
I am sorry that you have been shunned in the past on the board. Yes, this site is devoted to CH and those that suffer from CH. However, since your hubby has not been diagnosed, I personally do not see a problem with your presence here. If, in fact, he is diagnosed with something other than CH, I am sure that we can point you in the right direction.
There are some neuros listed by State in the links on the left. Have you read those??
I wish I could be more help to you and your hubby.
Best wishes to you and PF vibes for your hubby
Jean
|
|
IP Logged |
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! 
|
|
|
firebrix
New Board Hall of Famer
I must never weaken.
Gender:
Posts: 683
|
|
Re: Husband at the end of his rope
« Reply #2 on: Mar 9th, 2004, 4:42am » |
Quote Modify
|
Greetings from NZ pgmrslkj
My suggestion is that you become his advocate. Don't take "there's nothing we can do" from neuros. Ask for referral to someone who CAN help him. Keep asking and refuse to be pushed aside.
Get as informed as you can and please do the cluster quiz to get some real idea if that is indeed his problem.
Ask your neuro/doc to allow him to try the oxygen treatment (read the button to the left) as this is pretty effective for clusters and relatively inexpensive.
Become empowered and fight for him as he's probably too exhausted.
You are not alone. Most supporters get desperate at times but never as desperate as the sufferer.Harden up to the trivia on the board and take what you need, leave the rest, as wiser folk have advised me. There is so much wisdom here and so many people who can and will help you both.
Sometimes a day at a time is too long and we need to take one minute at a time. Remember to take time out for yourself occasionally and when moments are good, really enjoy them. Try to have a little fun whenever that is possible and do not become estranged.
Contact me any time I might be able to help, but TxBasslady has given you great advice and others more experienced than I will also give you the best of their experience and help.
Wishing you happier days
firebrix
|
|
IP Logged |
"All that it takes for the triumph of evil is for good men to do nothing."
Edmund Burke
|
|
|
t_h_b
New Board Hall of Famer
primary chronic since 1999
Gender: 
Posts: 527
|
|
Re: Husband at the end of his rope
« Reply #3 on: Mar 9th, 2004, 5:28am » |
Quote Modify
|
Sounds like you're in an awful situation.
Address any suicidal feelings your husband has head-on. Obviously he has a lot of inner strength (and outer support) to get through this so far. Even though his suicidal thoughts are intimately bound up with the pain he is experiencing, a good therapist could help him deal with some of the emotional issues created by the effects of the pain on his life.
Sometimes the two of you may need help to get through this mentally, spiritually, and emotionally and if he is not willing to get some support for this maybe the two of you could get some together. Some people look at it as admitting to being weak even though I don't see how that could possibly apply in your husband's case. You might try suggesting that he do it for you and your daughters. If he absolutely refuses that wouldn't stop you from getting some help for yourself. You couldn't possibly expect to deal with a problem of this magnitude alone.
It might help him if he connected with some other ClusterHeads. He could start here.
Some other ideas I have that you have probably already considered or tried:
Has your husband considered applying for Social Security Disability? He sounds like a very good candidate. There is information at the OUCH site and about.com headache site that could help. Please seriously consider this as an option understanding that it takes a while to get it.
Your husband may have more than one kind of headache. He may even have three or four kinds. The advice of others with multiple forms of headache might help, as well as a really good neuro who is used to dealing with several forms of headache at one time. Likely with aura there is something else going on as well.
Has he tried EVERY possible treatment? Melatonin? Capsaicin? Psilocybin? Has he givien each treatment a long enough time to work? Has he tried meds in combination, like verapamil/lithium, verapamil/melatonin? Magnesium? Intranasal lidocaine? Triptans other than Imitrex? Avoiding nitrates?
Pain meds aren't very effective with CH as you obviously know. But if that is the only thing that helps at all then by all means he should use them. Not to use them would be cruel. The addiction issue is not as big of a threat in general as you think it is and your husband might want to talk to a pain specialist if you are having to go that route.
You might want to post under the general or CH-specific topic to get more exposure and thus more help, especially from those with multiple types of headache.
I'll be thinking about you and your husband. You can call it vibes or prayers if that makes more sense.
|
| « Last Edit: Mar 9th, 2004, 5:33am by t_h_b » |
IP Logged |
No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
|
|
|
pgmrslkj
New Board Newbie
I love YaBB 1G - SP1!
Posts: 3
|
|
Re: Husband at the end of his rope
« Reply #4 on: Mar 9th, 2004, 7:53am » |
Quote Modify
|
Thank you for your support. Things are a little better this morning. Yesterday he went to out GP and got some sort of steriod shot, it helped enough that at 2 am he got up and drove to Houston for an 8 am nuero appt. We live in Corpus be the way. I just talked to him and he made it there safely. He is going to try a new nuero today. I guess this makes aroung ten or eleven nueros. I've lost count. We ran out of nueros in Corpus Christi and now he has to drive 4 1/2 hrs to try a new one. He has been through about 4 in Houston this will be the fifth in Houston. I hope he can do something for him. He actually has been diagnosed as having CH and migraines. He has had many MRIs he does have lesions on his brain. Whenever we ask a nuero what that means they says nothing. But when they say that he has lesions on his brain that sounds like something to me and seems like maybe that is the problem but the Drs seem to be stumped. We have a really good Family Dr who really cares about Pete and tries his best to help him and studies up on it all the time. Peter is currently on 80% disibility from the VA and will get a check every day for the rest of his life. It comes out to more than SSI and supposedly you are not allowed to do both. The problem is not the money, I am fortunate enough to make over $50k per yr and I can support our family. The problem is that he is old fashioned and I am too. He feels like a failure. He feels so bad that I have to take the kids to daycare and go to a job I hate and not be able to be a housewife. He hates that even though he is not working I still have to come home to a filthy house because he is usually to sick to clean it for me. He didn't want to be the housewife and that it is what it has turned into. There are alot worse situations I know. In alot of ways we are fortunate. In alot of ways we are not. I think last night I just needed a pity party to get it out of my system. It is hard trying to stay positive all the time. My husband is Polish and very stubborn, he does not like shrinks, he truly believes that they can not help. I will never stop asking him to go. I know that it could help. He has gone a few times for me and only goes to one appt or finds a reason why he doesn't like the Dr. One of these days he will concede and really try it. He is sort of antisocial as I suppose most CH sufferers are and I don't think he would come to this board. I don't know if he is embarrassed or just doesn't want to talk about it. I'm rambling now and I have to go to work. Thank you for the encouragement.
|
|
IP Logged |
|
|
|
Margi
CH.com Moderator
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender:
Posts: 3757
|
|
Re: Husband at the end of his rope
« Reply #5 on: Mar 9th, 2004, 9:43am » |
Quote Modify
|
Hi,
It does sound like your husband has a few different types of headaches going on. When you say 20 - 30 headaches a day, they have to be of a shorter duration. That is indicative of Chronic Paroxysmal Hemicrania (CPH). The pain mimics cluster but the duration and frequency is different. Has he tried indomethacin? It is almost 100% effective in treating CPH.
When you say oxygen doesn't work for him - what delivery method has he tried? It HAS to be delivered through a non-rebreather mask and a high flow rate (of at least 8-15 lpm, commonly around 10 lpm works.) If he's tried those nose canule thingys, it won't work for him. Oxygen is very reliable in treating cluster and migraine. Definitely worth a re-try if he was using it incorrectly before.
and, finally - you say he won't seek professional counselling for his depression. I think that's very common for clusterheads. I tend to agree and sympathize with that feeling and I firmly believe that he will get MUCH better "counselling" right here, from fellow clusterheads. Only other clusterheads can completely relate to the pain and all the challenges and frustrations it brings. You say he's home all day. Plunk him down at the computer, get him a screen name and INSIST he read and start talking to others like him. You'll be amazed at what it does for him.
Please keep in touch and know that you are in our prayers.
|
| « Last Edit: Mar 9th, 2004, 9:43am by Margi » |
IP Logged |
http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
|
|
|
MrsJDH
CH.com Alumnus
New Board Newbie
I love YaBB 1G - SP1!
Posts: 16
|
|
Re: Husband at the end of his rope
« Reply #6 on: Mar 9th, 2004, 2:53pm » |
Quote Modify
|
So sorry to hear about the pain and agony you, your husband and girls are going through.
My husband too, was at the end of his rope not long ago. Then he found this Message Board and with the help of the people here, not only the advice on treatments but a wonderful group of people that genuinely care and can realte to what you are feeling. It helped him (and me)so much just knowing we were not the only people dealing with this Beast.
If at all possible, please get you husband to at least have a look here, he might not be ready to post yet, but at least he'll know there are others out there.
Hope you husband's neuro visit today will bring you both some answers.
|
|
IP Logged |
|
|
|
Jackie
CH.com Alumnus
New Board Hall of Famer
Go For It!!!
Gender:
Posts: 2963
|
|
Re: Husband at the end of his rope
« Reply #7 on: Mar 9th, 2004, 4:25pm » |
Quote Modify
|
Hi pgmrslkj.....welcome to the board.
I am also married to a sufferer.
You have received some good suggestions here. I agree with some of the others and tend to think that your hubby has more than one type of headache....some symptoms fit CH to a tee....some don't.
Let's hope that the new neuro helps. Hang in here with us and we'll do everything we can for you and your hubby...support is all important when fighting this battle.
Don't let hubby give up.....I don't think you will from reading your post. There is hope....Blake & I went through hell for over 10 years......finally last August we came up with the right drug combo and now life is good. There is an answer out there.....tomorrow will be better if not then the next day or the one after that....
Hang in there, Sweetie....and please keep us posted
Jackie
|
|
IP Logged |
|
|
|
t_h_b
New Board Hall of Famer
primary chronic since 1999
Gender:
Posts: 527
|
|
Re: Husband at the end of his rope
« Reply #8 on: Mar 9th, 2004, 10:33pm » |
Quote Modify
|
I'm glad to hear that your husband got a little relief. I guess it was prednisone?
Finding this board and seeing that there were other ClusterHeads was a moment in my life that I will never forget. It was that important.
It's very comforting to know that there are others who know what you have to deal with and truly understand without being told. Then there is all of the information available as well as the hundreds of combined man-years of CH experience to help with questions. When you see that others have found things that help it gives you hope. It was a fellow ClusterHead who convinced me to try verapamil which was my first preventative and was a big help. I also learned about melatonin here and that has been what has gotten my headaches under control.
I hope that you can get your husband to come here even if it is just to read and not to post. It may give him hope and psychological and emotional comfort and help him find strength to deal with the CH and migraines. There are several people here who have both. Maybe if you tell him that he will investigate this site.
|
| « Last Edit: Mar 9th, 2004, 10:35pm by t_h_b » |
IP Logged |
No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
|
|
|
helpless23
New Board Old Timer
Gender:
Posts: 269
|
|
Re: Husband at the end of his rope
« Reply #9 on: Mar 11th, 2004, 8:45am » |
Quote Modify
|
HI pgmrslkj
I'm sorry to hear that you and your husband are going through this awful time. I can't speak as a sufferer and tell you that I understand what he's going through. I can't. I don't get visits from the Beast, but my husband does. He's been dealing with it since he was 20 years old, and now he's 45. He had a 7 year break but now CH is back again.
We haven't gone through as many Dr.s as you have, but I can tell you that if you have to keep searching for a Dr. out there who knows what he/she is talking about, then do it. There IS HELP! First of all, there is this board, which was a BLESSING to Ken and I. I've never experienced this with him before - I heard all the stories about his HA's, but neve went throuh it with him until now. It sucks. You need to find a Dr. who IS EDUCATED as much as possible with CH and CPH to know the difference. We were fortunate and we found one in a decent amount of time, but that was only after having to deal with neuro's who took guesses and actaully made the pain worse. Indomethacin was prescribed - Ken turned into Mr. Hyde in a matter of 1 week. And was still getting headaches and shadows everyday. Imitrex nasal spray worked for him. Finally, I got fed up, found a new Dr. and he prescriped Varapamil -. I'm happy to say that Ken has been PF for 6 days now SINCE he started it.
So there is hope. Everyone is right. Get him on the computer and make him a screen name and get him to read! It can be so hopeful to the sufferers out there. I know it was to my husband. He thought he was wierd or had something seriously wrong with him. When he found this board, it was almost like a new "family" in an instant before he even posted. It will shed a lot of light.
Eveyrone here is GREAT. Supporters and sufferers. They are fun and nice and sweet, caring...you name it. It truly is a 2nd home for many. I know it is for me and Ken.
Good luck to you - from one supporter to another (and I'm sure I speak for many) if you ever NEED ANYTHING, don't hesitate to PM, post..whatever you have to do.
Hang in there hon!
Much Love,
Toni
|
|
IP Logged |
|
|
|
miapet
New Board Hall of Famer
what doesn't kill me makes me stronger
Gender:
Posts: 676
|
|
Re: Husband at the end of his rope
« Reply #10 on: Mar 12th, 2004, 1:13pm » |
Quote Modify
|
Stay strong!!!! Be the best advocate you can be . . .and know that you're fighting the good fight!!
We are in Houston . . if I can be of any help . .let me know . . .docs, directions, screaming, whatever . . .
miapet
|
|
IP Logged |
Clusterbusters Rock
www.clusterbusters.com
|
|
|
KimM
Guest
|
|
Re: Husband at the end of his rope
« Reply #11 on: Mar 16th, 2004, 7:07pm » |
Quote Modify
 Remove
|
Married to a chronic clusterhead here. I can relate so much to things you have said. Heed Margi's advice and "plunk him down at the computer" and get him active here. This place and these incredible people have literally been a lifesaver for Mikey. Mike also has more than cluster h/a's. He also has very bad migraines that affect things like his vision, speech, and coordination very bad for days. And the pain of a migraine on top of ch's is something I never could have imagined.
Mike stays home and is on full SS Disablility and just like you said is most days unable to help around the house as he is just too sick. I work full time and come home many days to a shipwreck. But the days he is able he will do nothing more than empty the dishwasher for me and even though he thinks this is so small I know what a great task it was for him and I always let him know how much I appreciate it. He has his bad times of feeling useless but our boys and myself let him know right quick how usefull he is to us. You sound like a wonderful supporter and if there is ever anything I can do or if you just need an ear please IM me.
Don't give up on finding a good doctor. They are out there. We have given up more than once only to stumble upon a great neuro, who has since retired, and a great GP who is now handling his ch's and educating himself on how to treat him. I know how hard it is when you feel like a good doc would make all the difference in the world and don't know where to turn to find him or her. But keep looking and keep hope, don't give up.
When Mike has been at the "end of his rope" so to speak with months of rolling ch hits daily, he has went to his doc and told him straight up how bad things are and that's it, can't take it anymore. He will hospitalize him, and if unable to break his cycle, at least he gets some pain relief via IV pain meds. This has gotten him though the "suicidal" times more than once.
I wish you all the best and remember to take care of yourself also. It is so easy to loose yourself in all of what's going on with your husband, mentally and physically, trying to deal with all this and raise two boys, work, and keep a house so that you can walk in it is a battle that I fight daily, but I do fight, even when I feel like giving up.
One last thing, if you EVER have a chance to go to a Cluster Headache meet and greet or the convention, this year will be our first convention, do so. I do lurk on here much more than I ever post and feel like I know everyone and yet very few know me, I know that we are not alone. There is NOTHING like meeting others face to face.
Everyone has given you great advice here. Hope to see you around here a lot and please try to get your hubby here. You and he may be very suprised what this place can do for you.
Take care, PF vibes for your husband.
Kim
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss