Hello everyone !
This is my first time posting. My husband has cluster headaches. He also has muscle pain in his whole body, they don't know what it is, possibly Fibromyalgia. He is on Lyrica for it, but it is not helping at all. Also, he has stomach & abdominal pain,cramping, diarrhea & nausea, Which he is on a whole bunch of meds for. He has had the cluster headaches for 23 years. The stomach/abdominal issues & body pain for 1 1/2 years. The muscle pain is constant & is worse when he moves, which makes his headache walks harder to bear, also he can't walk at the pace his head wants him to because his body won't let him Which makes him anxious. He also has rapid cycle bipolar. He is suicidal due to all of the pain & he says he thinks about suicide all the time . He is in peak now. I am taking some time off of work during peak so I can try to prevent him from killing himself. But he doesn't wake me in the middle of the night when he has to walk, so I cannot always be there to prevent it. I don't want to wake up to a dead husband! My husband says that if he wasn't in a cluster cycle then he would belong in a psyche ward because of him being suicidal. He doesn't want to go to a hospital because he says they won't let him walk at night & if he acts out, they will put him in restraints in a quiet room. He says if he was in a hospital it would be torture & when he came out he would never be the same & would be much more likely to kill himself when he gets out. So I will try my best to keep him out of the hospital. But if things get bad I may have to. Does anyone have advice on how to handle things with a suicidal cluster headache loved one?

You handle things with a suicidal cluster sufferer just as you would anybody who is suicidal.  Keep him talking.   I would also suggest, that, if possible, you sit down and have a talk with his psychiatrist, with or without him.

That aside, what has he tried for his headaches?  Is he on oxygen?  And, if I may ask, what meds does he take for the bipolar condition?  Does he see one physician who coordinates all his meds or does he see different docs for each condition?

I know that you're coming here to try and find out how to best prevent your husbands potential suicide, but he has a myriad of conditions that compound the clusters.

Carolyn~aka~deltadarlin

Wow Dehlia, I don't even know what to say. I'm sorry your husband is suffering so.
Tell us more about how the doctor treats him for CH? I realize he has so much more going on. Has he tried O2 to abort a headache? How about redbull or other energy drinks with taurine?

Hi,
I have paranoid schizophrenia and major depression.  I have felt suicidal on many occassions due to multiple medical conditions.  I suffer from chronic ch.  which means I get them every day all year round.  I was blessed to find a good and compassionate dr who gave me some good meds to stop the ch.  Has he tried verapamil, topamax, lithium, zerprexa, elavil, oxygen, imitrex, there are so many combinations out there to try.  You dont say what he takes for ch.  Can you tell us?  As far as feeling suicidal get him to see his pyciatric dr that perscribes his meds.  Tell them how he is feeling.  It is one thing to feel suicidal.  It is another to have a plan of committing the act.  They will ask him if he has a plan.  If not, they probably will give him an antidepressant. If so, they will probably want to hospitalize him.  I have been hospitalized with ch in the mental ward.  What is more important is his life!  When I checked in I told them I had ch all hrs of day and night and that I needed room to pace and head bang.  That was not an attempt at suicide but part of a ritual because the pain was so intense.  They gave me a private room and I could pace and do all I wanted to in there.  However, I had to go to them to get the imitrex to abort my ch and they dr didn't have the order written up.  I was livid.  They got it quickly as possible I made sure after that when I went in the order was ready to go and up there.  If he does try to kill himself in the hospital which I tried to do they will put you in a room with 4 walls and a mat and blanket for 24 hrs or until the drs say you can come out. So again he would have another room all to himself to headbang and walk around in.  Dont let him fool you.  It isn't as bad a place as it sounds.  If his life is in jeapordy please call 911 or take him to the emergency room if after hours.  Otherwise get him to see his pdoc.  Hope I helped some.

Dehlia,

    Oh sweetheart between your husband and you, you've got a whole lot on your plate.  I'm afraid you are going to have to be strong for a while, since he is in so much pain that he isn't thinking rationally.  You have to.

     I am putting my phone number out here for you.  Please call me when you get a chance.  I may have some insight for you to help him...if not I am a good listener and I think you need some help,  in order to help him. 
I have unlimited long distance, so if you don't, you can call me and I will call you right back on my dime.

Linda Howell   (270) 824-8328

They all said the things that need to be said.  I'm a supporter, too and I just want you to know I'm praying for you and your husband.  Strength and peace and pain free times for both of you.

This site is full of caring people with tons of knowledge.
Keep talking to us.  There are better days ahead with the support of this group.

Big Hugs....

Thanks everyone for your caring replies !

For his Clusters he has oxygen which doesn't abort his headaches but it helps so they don't get as bad, but only if he can catch it early, so it doesn't help when he wakes up with headaches at night.He has been on Verapamil for about a year , so this cycle and last cycle were milder due to the Verapamil. (He has his cycles in the spring & in the fall) The only problem with the Verapamil is it makes the cycles last longer , but it is a good trade off. He also has imitrex injections which do help but he doesn't like to take it often due to the side affects. He tried prendizone & Lidacane , both of which didn't help.  How does the red bull work ? & how should he take it ? 
His psycopharmocologist does both the prescribing of his Prozac for his bipolar & depression . He is a really good doctor , he goes out of his way to help my husband . He also does his therapy & prescribes trilepltal for his epilepsy (which hasn't been a problem lately) He has a background in Neurology. His PCP prescribed the other meds for his clusters. He has a Rheumotologist that prescribed the Lyrica for his body pain (but it doesn't work) , He is slowly going up on the dose , so he is not at the full dose yet , so hopefully it will help when he is on a higher dose. He has a gastroenterologist that prescribes his stomach meds & during his non-headache time was doing testing to try to figure out what is wrong , but he hasn't figured it out yet.
Well thanks again everyone , Linda, I may take you up on that phone call. Karla, Sorry to hear about your chronic clusters as well as all of your other health problems , I have schizophrenia too & I can't imagine having chronic cluster headaches on top of it. thank you on your input about what it would be like for him in a hospital during his clusters, His psycopharmocologist does know he is suicidal & I did call him a couple of weeks ago , I told him I was very worried , I asked him if I could get him in a hospital even if my husband refuses & he said , if he is suicidal a doctor or a policeman can write a ten day note to put him in the hospital. I asked him what I should do & he asked me if I was calling him because I thought my husband was going to attempt to kill himself then & I said no, & he said take it as it comes. After reading what you wrote about your hospital stay, I feel better about it if I have to put him in one.
-Dehlia

After reading your last post twice something hit me that you may not have thought about.

Your husband seems to have mutiple medical problems as well as multiple doctors treating him.  Are they all talking to each other as to what meds they have him on????  One for epilepsy, one for bi-polar, one for gastric problems, one for CH, and another for body pain.  Do you see what I am getting at?

Please keep my number handy and call me whenever you want.  I am chair of "Family Services" for OUCH and I talk to folks almost every single day.  Either by e-mails or in phone conversations.  I am not a doctor by any means but I have been here at this site for 11 years now, at OUCH for 10 yrs. and I, myself have had chronic CH for 22 years. 

Because of what I do at Family Services...I've taken classes on suicide intervention and truly want to help.

Linda 

Dehlia, you said he has tried the o2 but that it doesn't work very well. I wonder what kind of mask he uses, and the flow rate. Be sure to check out to the left yellow button about oxygen. Many have thought o2 didn't work for them, until they tried higher flow rates and a non-rebreather mask.

Good luck!

He brings a printed out med list with him to all of his doctor's & brings a new one if the med's changed.
He uses a 15 liter flow rate & a non-re-breather mask.

-Dehlia

Thank you ,

I read the oxygen info. I told my husband that 25 to 60 liters can work better , also he wasn't staying on it long enough , he thought that if it didn't work in a short amount of time , it wasn't going to work , so now he can try staying on it for 15 to 20 minutes , & also I told him he should continue to stay on it for 5 minutes after it is aborted , I hope it works for him!

-Dehlia

A couple of important points about O2. Hyperventalation of O2 will give the fastest aborts. When the pain starts to go away, stay on the O2 at a lower flow for several minutes.

Also, set up straight, don't bend over as this restricts the lungs. Doing all of the above at what ever flow rate will bring the best results.

Higher flow is needed when the bag is emptied before the user can get the biggest breath they can. A better mask also helps with this.

Good luck, Don

Thank you Don ,

I will let my husband know your O2 tips !

-Dehlia

Dehlia, it has been a week since you posted.

     How is he doing? 

Linda_Howell wrote on Nov 3^rd, 2009 at 4:56pm:

Dehlia, it has been a week since you posted.      How is he doing?

She was here yesterday but there was nobody here to massage her.

         potter

I have a thought too and if it sounds too stupid I bow to more experienced people,but is he drinking a lot of diet soda? I've read and watched roomates go through a lot of what you are describing. They were going through a lot of diet soda- cases a day- and most if not all their symptoms went away when they stopped. Also read an article about people with chronic body pains having the same problem and clearing up when they stopped. Don't know if he does, but can't hurt to investigate-only the diet stuff does this.

If he is on most any sort of the newer anti-depressant medications (SSRI's) the use of any triptans can cause something called Serotonin Syndrome. Don't know what that is but some of the symtoms sound similar to what you are describing. Might be worth a mention to the doc. Good luck.

I'm sorry that is hard..

   I wouldn't really know what to do except be the most optimistic person i could be. If he's suicidal that means he thinks he has nothing left o live for to be happy about. You have to be his opposite! Let him know that you love him and will never leave his side and that as long as you're there, he has comfort in knowing someone wants him alive. Don't be scared, be strong.

K. Hartley wrote on Feb 17^th, 2010 at 11:43am:

I'm sorry that is hard..    I wouldn't really know what to do except be the most optimistic person i could be. If he's suicidal that means he thinks he has nothing left o live for to be happy about. You have to be his opposite! Let him know that you love him and will never leave his side and that as long as you're there, he has comfort in knowing someone wants him alive. Don't be scared, be strong.

People who are seriously contemplating suicide are not thinking of others or their positive outlook. Your "bright side of life" treatment may, in fact, have exactly the opposite effect as is intended. He needs to talk to a professional.

well would it make him feel better if he talked to one of us on the phone?

I know when i was in the hospital, it was nice, if u are in the psych ward they let u do just about everything because they want u to prove to them u can live on the out side. so they would let ur husband walk around at night.  but i do have it say the doctors were unavailabe. and really easy to lie to them. it would be better to get ur own doctor and do out patient. which is probably what ur husband is doing now.  i wonder i noticed that i only get suicidal after i start getting a headache :( lol i probably should see a doctor but well, they said i was ok in the hosptial so when i kill myself :) i will know i have logically come to that choice :).  but it is interesting i never thought of my headaches causing me enough pain that i want to die :)

Brew wrote on Feb 17^th, 2010 at 2:37pm:

K. Hartley wrote on Feb 17th, 2010 at 11:43am: I'm sorry that is hard..    I wouldn't really know what to do except be the most optimistic person i could be. If he's suicidal that means he thinks he has nothing left o live for to be happy about. You have to be his opposite! Let him know that you love him and will never leave his side and that as long as you're there, he has comfort in knowing someone wants him alive. Don't be scared, be strong. People who are seriously contemplating suicide are not thinking of others or their positive outlook. Your "bright side of life" treatment may, in fact, have exactly the opposite effect as is intended. He needs to talk to a professional.

I agree. People who are suicidal need to be treated by a professionals.  Telling them how great things are or used to be or will be can make them feel more suicidal because they often think that they will never feel that way again.

I want to kill myself when I get CH... when i'm not having one i'm a happy go lucky guy. I've been to psych wards myself, so I understand his pain.  Basically I know many people on this site will disagree with me on my suggestion but in a circumstance where he is in HORRIBLE pain, mentally and physically, go to the ER and get some drugs, ASAP... then when the pain is under control in the moment get moving toward a non-narcotic approach until he finds something that works for him.

foolclip281 wrote on Jun 8^th, 2010 at 6:03pm:

Basically I know many people on this site will disagree with me on my suggestion but in a circumstance where he is in HORRIBLE pain, mentally and physically, go to the ER and get some drugs, ASAP... then when the pain is under control in the moment get moving toward a non-narcotic approach until he finds something that works for him.

I think the key is to go to the Emergency room for some relief. An 02 tank will work alot faster and your loved one will be able to walk out a different person. In addition, and ahead of that really, start working on the 2-prong treatment approach - preventative and abortive.

Quote:

Basically I know many people on this site will disagree with me on my suggestion but in a circumstance where he is in HORRIBLE pain, mentally and physically, go to the ER and get some drugs, ASAP...

Could not disagree more. First off, you will quickly be labeled in their system as a drug seeker. Second, narcotics do little to alleviate the pain of CH. Lastly, if you're looking to trade physical pain for another kind, which narcotics will get you, then you're beyond my abilities to help. You need help, but I'm not qualified to give it.

Quote:

I agree. People who are suicidal need to be treated by a professionals.  Telling them how great things are or used to be or will be can make them feel more suicidal because they often think that they will never feel that way again.

I've been reading the posts about suicide prevention, and the advice to keep the person talking, especially to a professional, is critical. The person who considers suicide, and who makes a plan, will often appear in much better space than before, because a "way out" has been decided. The feeling of being endlessly trapped is now dissipated. So the attempt, when it comes, shocks the supporters since they thought things were going so much better.

Also, never think that asking questions about suicide or plans to commit suicide, will "put ideas" in someone's head that weren't there before. If the person has no intention of committing suicide, they will say so. If there is no plan, they will say that, too. Prevention depends upon a good plan that will deal with the issues, support like Linda's, and no rejection of the depression from supporters.

And all cries for help are serious. The one contemplating suicide may feel immediate relief just having been heard. lance

This is my first post and although i used to suffer greatly from CH i have not had an attack for some 12 months or so now.

The first post on this thread makes mention of Fibromyalgia a mate of mine also suffers from this condition and i really feel for the bloke.

I thought i would add to this post as it may be of some benefit to your Husband, my friend gets great relief from sessions of Bowen therapy it maybe worthwhile booking a session.

Now for CH, i don't think anyone can give us suffers a straight answer as to what causes CH i think in my case is way to many knocks to the head.

I suffer from Horners syndrome and CH is one of the symptoms, i suffered for a good many years and had numerous tests eg MRI and CAT scans all clear.

I will add what helped alleviate some of the symptoms associated with this brutal condition, I found keeping fluid levels up to be of some benefit, alcohol definitely does not work as a means of pain management as you have all probably found it only worsens it.

I think in some cases it is related to some sort of circulatory condition as i noticed while i was having an attack i would try and go straight to the shower and have it as hot as possible this i think improved circulation by thinning the blood as the body warms up.

I also found staying away from products high in sugar helped as well, also fatty foods seemed to trigger attacks also, eye strain and not getting enough sleep do not help either.

After having a shower as hot as i can stand it and forcing myself to sit still i would get out of the shower wet and sit in front of the fan or aircon it sounds bizarre and probably not advisable but it did seem to help.

Unfortunately that's all i have, even if it helps a little it's still worthwhile, anyway good luck to you all.

Regards- Stu

Welcome to the board Stu, take some time and peruse the boards. There are some great abortives and prevents available now that beat the heck outta the old hot shower routine.....many used the same techniques you've described before discovering 02!

Read the oxygen info tab on the left, if your CH comes back, and sadly it usually does, oxygen will be your new best friend. 6-8 minutes huffing oxygen and I'm pain free.

Welcome to the board, so glad you stuck your nose in! :)

Joe

Hello there, Stu.  I take it that with your user name, you are a ham operator from Australia?

Carolyn~aka~KM5YL

Quote:

i think in my case is way to many knocks to the head.

I will assume you are joking with this statement.  There have been many many questions on this site regarding this subject.   At the last convention in Atlanta, our great Dr. Goadsby from England who spoke at 2 conventions and is one of our greatest allies in our fight, said this:

 
Quote:

Allergies, food sensitivites & hormones are NOT a factor in CH. Only 7% have a family member with CH There's a slight correlation between head injuries and CH, but no relation to it. Diagnosis is based entirely on symptoms. Prevalance is 1 in 1000 Male to female ratio is 2.5 to 7.1 10% of episodics will become chronic no matter what they do or take.  30% in the reverse. Back to top

These are random notes I took, but thought the head trauma thing was needed here.  It's been asked by too many in the past by those who seem to need a scapegoat or something to blame for this condition. 

It is,  what it is and all we can do is treat it the best we can, support one another and go on with our life between the hits.   :-/\

Linda

G'day All

"I will assume you are joking with this statement" no I am not jokin only guessing as i have had a hell of a lot of heavy knocks to the head whether this has caused the Horner's syndrome i haven't a clue.

"Hello there, Stu.  I take it that with your user name, you are a ham operator from Australia" G'day Carolyn, yes I am a ham from VK as in the state of Queensland.

I don't usually use my call as a user-name but if i cannot think of one off the top of my head straight away i just use vk4vfx as it is easy to remember.

I just counted in my favorites all the forums i am a member of and there is 26 of em covering all different subjects so it is a bit hard to keep track of 26 user-names :D nice to meet ya I hope the God's of propagation are being kind to you so far in 2011 :)

"Read the oxygen info tab on the left" Thanks Joe yes i was havin a read last visit i had heard of it before but not really done any real heavy readin into it but it sounds like it definitely does the trick that's for sure, i would dare say a cylinder of Co2 wouldn't be cheap though?

I did read many years ago so this will also be old info that there was some University in the U.S that were studying the effects of the chemical found in Magic mushrooms cylabin is it? anyway maybe someone can throw some light on that, this chemical they found was of some benefit to CH sufferers.

After readin through some of the posts on this forum it's sad to see there are some sufferers that are extremely distressed by their condition and i can fully sympathize as we all know there are different levels of symptoms some sufferers are chronic some not i wouldn't label myself "chronic" but i know how bad it can get.

With a few of my memorable episodes where i was smashin my head nearly as hard as i could on the wall to get some sort of relief from the agony to the point where i split my head open, I am sure we have all done this at some stage?

As I mentioned above I am not that well read on all the new pain management techniques so i will have a good read before i log out, it seems maybe there is not to much research going into the actual cause of CH I think it is not just one thing it is a conglomerate of things.

Is it environmental? hereditary? and yes i read about the hereditary bit in Linda's post there is no family history on my end, being a rather little known illness and a small percentage of sufferers could be the reason why there is little research into it that's usually the way it works until some high profile individual eg Michael J Fox starts to suffer from it they then chuck a heap of money at it it then gets a heap of publicity etc etc etc and ya know how the rest goes, same with Christopher Reaves.

Anyway I am rambling on so I will leave it here, one thing I am sure of and that is suicide is not the answer and you must be a chronic long term sufferer and as one of the people here inn this thread suggested, you need to get professional help I really hope it works out for you.

Cheers to all. 

There is a great deal of study going on in the use of mushrooms and similar substances for treatment, and some incredible success stories. Go to this board,   clusterbusters.com    for details on these therapies.

And before my insurance paid for it, Oxygen E-Tanks cost me $4 a month for each tank I rented, and $12-$15 for each refill. Most insurances will cover it, especially if you show them the compariosn of 02 vs the cost of imitrex!

Joe