Wife considers suicide

[Criticalmass]

My wife has suffered from cluster headaches for two years now. She suffers attacks that usually last hours (longer than the norm) and they can be triggered by just about anything.

Saturday she had her first CH free day in a year. She was her old self. Smiling, laughing, even wanted to go shopping. We took a long drive and that's when she confided in me about suicide.

I'm no stranger to suicide. I suffered chronic back pain from four herniated discs and had sever sciatica that led to nerve damage. By the time I had surgery (quad spinal fusion) I had given up and stopped eating. I lost 40 pounds in 30 days and it scared my doctors so badly they finally agreed to the surgery.

Two years ago my mother was diagnosed by mental health professionals with schizophrenia when they were called out to her home by the police department to try and talk her down. She shot herself in the head before they get her out of the house...

My wife has tried all the drugs and two brain surgeries. She has had so many of the drugs I don't remember them all. Imitrex, topi Max, Tripitan(sp) Oxygen. Nothing has worked.

Today I had to carry her in from the car, I don't think she realized where she was or that she was crying. Right now she has isolated herself in a dark room (nightly event).

I have seen suggestions for vitamin D. Energy drinks and more. Her CH seems like a worst case scenario from what I have read and heard from others. Her neurologist refused to see her anymore after the two surgeries that we had to pay cash for because her health ins. Wouldn't cover "experimental" procedures.

I don't know what to do anymore. Her family doesn't understand. I am the only one that sees all of it and how bad it is for her. Her work only knows she has health issues and misses a lot of time.

I have spent 60k of my mom's life insurance for hospital stays and treatments and maxed my credit cards which are now in default.

The only options I haven't tried are not legal in this state. But I will do anything for her. The problem is, there is nothing I have been able to do that helps.

When she is lucid and not suffering an attack she doesn't want to hurt herself but when the pain comes it is a consuming and it goes full bore in under a minute or two. Her moods have changed. She has PTSD and lives in fear of the next attack. Her anxiety levels are through the roof and most weekends are spent in bed taking muscle relaxers to stay asleep.

She also takes adderall and xanax. She stopped taking both for a while with no change. If anything it got worse.

Her doctor gives her Oxycontin, 10 pills to last 3 months. They help sometimes if she takes them right at the onset. But she is afraid to run out so she waits until the pain is unbearable.

She also has bad kidneys from the birth of my step-daughter, and a genetic heart issue that doctors claim she doesn't have even though her bio-dad and many on his side of the family dropped dead of heart attacks before the age of 40. She is 32 and was born addicted to drugs and premature. She and her twin brother were adopted (he died at 17).

The only doctor who really believes she has issues is her PCP that is not a full doctor but is a physicians assistant? (Like a nurse practitioner but one step up) and she is doing everything she can to help but she has to fight the doctors in her office to sign off on the pain meds.

She will sometimes hit herself , pinch herself, and cut herself. I understand why because I used to do the same thing. You can block pain signals to the brain by inducing different forms of pain to the body. It does work but the relief is usually short.

This is not who she is. She is highly intelligent (IQ of 152) caring, loving, Catholic, who is transformed by the pain. She is not mentally unstable. She is not a hypochondriac. She has no history of mental illness or depression, but her family just writes it off as migraines (I have these. They don't even compare) or pretends there is nothing wrong at all. We are truly alone and I don't know what to do to help her anymore.

[Criticalmass]

I need to add that she has tried the energy drinks, the melatonin, vitamins of all sorts. She can't run or walk far because she gets out of breath. She is twelve years younger than I am and I used to not be able to keep up with her. Now I have to walk at a slow pace so she can keep up with me. I DO have a history of depression (growing up with a mother who was mentally ill and abusive isn't a fun experience) but I take medication for it and it works for me.

I will never leave her. My biggest fear is that I will have to bury her and see my step-daughter who I've raised since the age of 2 taken away and give back to her abusive bio-dad.

When I was at my worst with my back pain and confined to a wheelchair my first wife divorced me. I love my wife and am devoted to her, she, we, need help. We need something to lessen the pain or abort the attacks. 4 to 6 hours of this kind of pain at a time.... I don't know how much longer she will last. She has. Had CT scans, MRI's. We haven't left any stone unturned. I suggested mj even though I have no idea where to get it but she refuses when she is not having an attack. And I don't have a clue where to get it in any case as it is not yet legal here. I'm not even sure it would help.

[mit12]

Criticalmass,

Welcome to the family. Sorry to hear this, you are at the right place. There are a lot of knowledgeable people on this site that can and will help you. Please read up on the D3 program. Is your oxygen system a high flow system 15lpm or greater with a non rebreather mask? Oxygen did not work for either until I got a high flow regulator and the non rebreather mask. Hang in there.

[CHfather]

So sorry to read of this really, really tough and sad situation!  I feel pretty sure that everyone here can relate to what your wife is going through, and we know how incredibly hard it is to see someone you love going through that pain, let alone considering suicide.

 

Mit''s questions/suggestions are the right place to start trying to help, if only because they might be things your wife hasn't tried -- or maybe not properly tried -- yet.  Here's the info about the D3: https://clusterbusters.org/forums/topic/1308-d3-regimen/   In the third paragraph there's a way to send a message to Batch, who developed and refined the D3 regimen.  If I were you, I would get in touch with him -- he won't mind, I promise -- and have his help in making sure she's doing this as correctly and effectively as possible.

 

Most people who have "tried" oxygen and found it didn't work are not doing it right.  High flow (15 liters per minute at the absolute minimum), good quality non-rebreather mask, and effective breathing technique are essential.

 

It's probably true, I guess, that she must have tried everything, if someone was willing to do two brain surgeries on her when she's had CH for "only" two years.  What were her brain surgeries?  But lots of people say they have "tried everything," but then it turns out that, for example, the Imitrex they were taking was in pill form, which is completely useless, or as a nasal spray, which is often useless.  Was it injections she was taking?  Or we find people who haven't tried a steroid taper, or a preventive such as verapamil.  It could be that some of the available treatments weren't available to her because of her other medical conditions.

 

Now, we have a member here who, if he's listening, can tell you about rising from the deepest depths, after brain surgeries.  He used "magic mushrooms" (mushrooms containing psilocybin) and the difference was amazing.  Many people here have treated CH with success using psychedelics, having come here out of desperation, as a "last resort."  Marijuana probably won't help her -- makes it worse for a lot of people.  If you want to consider mushrooms or other forms of "busting" with psychedelics, you should read the numbered files in the ClusterBuster Files section and then get back to us.  (A big challenge with starting the busting treatment is that you have to not be taking a lot of meds, because they interfere with the effects of the psychedelics. See the file "Playing Well Together" over in the ClusterBuster Files section.)

 

It's odd, though obviously not impossible, to be so severely chronic so quickly, and have nothing at all that helps.  When oxygen (if she was using it properly), triptans (if they were injectable), energy drinks (downed at the first sign of an attack), and other usually-helpful first-line treatments don't help, you gotta wonder if she has some other condition that looks like CH.  Has a hemicrania continua (HC) diagnosis been looked into?  Has she tried indomethacin, which treats HC but does nothing for CH (just as CH treatments do practically nothing for HC)?

[Dallas Denny]

Welcome to the community criticalmass....so sorry you had the need to join us!

Chf and Mit12 have already covered any suggestions I have but to reiterate:

Batchs D3 regimen is effective for many ch'ers and very easy to put in place.

Properly administered high flow oxygen therapy using the proper technique, with the correct set up is very effective as an abortive for the vast majority of ch'ers so please give us some details on your wife's past experience with it, flow rate? delivered via nasal cannula, mask, or non rebreather mask?

Medical grade cannabis works very well for pain from my degenerated disc disease but doesn't trigger or help CH for me, however, many folks do find it to be a trigger.

What type of brain surgery did she have?

Dallas Denny

[ThatHurtsMyHead]

Criticalmass,

 

You're a good supporter.  I wish there were more like you around.  What part of the country are you?  Feel free to send me a private message.

 

J

[amon10]

One thing I'll add on the O2 is follow every thing they describe on the links here. It did not work for me until I did. Also don't be afraid to go to "welding" oxygen route. I have for some time now and the only difference I have found is it's cheaper for me and I don't fight with my insurance anymore. And share these posts with your wife and let her know we all care and are in her corner.

[mit12]

Criticalmass,

After reading your post again I wanted to tell you that family members that do not live with you and your wife will not understand, they do not see her rolling on the ground screaming at God to kill her etc. Now that you found Clusterbusters you are not alone. Your comment about PTSD is accurate, I have my black bag that has my Zomig in it and I use to freak out if I left home without it.

[razorPP]

sorry to hear you wife is going through this, you found clusterbusters, tell her she's found a group of folks who have been where she is at now, there's support, knowledge and hope here. i've been to the edge and it's hard not to see past it. thank you for being there for her, we are going to get her to a better place than she is at right now. i came from where she is now, these folks here helped, this ch stuff can wear you down, but the d3 once it gets in her system will help with the pain level, and it will take time, batch has all the info you need for d3. get the o2, correct flow rate and the right mask makes a big difference, two thing to start her feeling a little better, good luck, peace