Clusters making me restless, angry and causing problems with family.

[mikeh2017]

This is intensely personal but I think only you guys would understand. A few days ago I thought I was getting over a cluster that has been around for a month.  Suddenly at 2 am, I went for 2 and half our session where I found myself both exhausted and restlessly pacing my living room like a crazy person, trying to keep quiet and not wake up our baby.  Since they generally happen at night , My wife has rarely seen me go through such a bad cluster, and I despite me explaining it all the symptoms, the thoughts of pain freeness of death and what a relief that would be (which go away thankfully after the pain subsides) and showing her Clusterbusters and countless videos. I know there is nothing she can do, but I find myself getting angry also, at the situation and also with her not being able to truly understand. The result has been a horrible argument, made worse by my fear of another looming attack, by my anxiety and fear, which is also causing our relationship to suffer. How do your spouses help you ? Can they? Or are the attacks a solitary thing that only you can bear yourself because nobody who hasn't experienced it can understand. Thank you.

[kat_92]

Hey you’ve come to the right place. Many people on the forum report that their significant others are great about helping them deal with clusters. I have yet to have a bad attack (knock on wood), I have been attacking them head on. I found that alternative methods have helped a lot with the anxiety and dread of this disease. You need to also realize that even though this is so unfair, it’s hard for someone to fully understand a level of pain if they themselves are not going through it. This is a life long affliction and significant others should be prepared to help their loved ones in any way they can. I really hope you find some peace of mind. 

Kat 

[maskedmarvel]

Its such a difficult thing, please don't beat yourself up.. I am not married and have no advice but I just wanted to say I feel for you and wish I could help

[CHfather]

mike', I know this wasn't your question, but what are you doing to treat your CH?  Maybe if your attacks were more under control it would help your frame of mind at least a little.  

[spiny]

It is very difficult for the CHer and the spouse/partner to grasp what we go through. Do not expect it! And actually be grateful they don't have this mess. My spouse wanted to be there to know about everyone that I had and try to 'help'. It about caused a parting of ways. 

For me, there is NOTHING he can do to help, just leave me alone till it is over please. That was the hardest part for him. 'How about I talk to you and you just listen?' Listening jacks up my pain. He was devastated to find out that the best thing he could do was leave me alone. And I finally got my tanks moved to another room so I could treat them in peace. If he hears me get up, he acknowledges it and leaves me alone. If I say I need a day off to treat this, he supports me in that effort. That is the best thing a spouse can do in my book - help you treat this disease. 

Showing him a man suffering with this solved my problem. He 'assumed' it was because I was a female  and not able to take the pain 'like a man'. The videos  proved my point and he stopped thinking I was a wimp and offered up all of his support because he now saw my strength. 

You need to understand that she can't really understand what you are suffering. You need to do everything that you can to get them under control - for yourself and your family. Where is your O2? Are you using it in the best way possible? What are you taking for your CH currently? There are many ways to reduce the pain or actually kill the cycle.Please, allow us to help you find your way back to life. 

What are you ding for your CH now? 

ATB!

[devonrex]

My wife shattered her back and I mean blew apart t5, fractured all the spinous processes down her back, so she does know chronic pain. Which is helpful. We have come to a bit of an equilibrium, i'll ask for say essential oils on my temple area or she will ask if I want them, it does next to nothing except maybe the scent is slightly calming, but she feels like she helped and I let her. We both know the truth but it gives her some control or input into "helping" she also did a crapload of research and funny thinking now, Lamaze breathing can help during an attack, something she found. She will also get my o2 ready, grab me a pill or ask, I just have to nod or shake my head, gives her a sense of helping, feeling not so helpless. That is one thing she has conveyed to me, how horrible it is to feel helpless to do anything, some of her fear and frustration stems from that.

You have to accept she will never truly understand, she will have to simply believe you. 

Edit I have found meditation, guided, helps in between to stave off those "omg what is the next going to be" Headspace, on any device is a great app.

 

 

Edited October 7, 2020 by devonrex

[mikeh2017]

11 hours ago, CHfather said:

mike', I know this wasn't your question, but what are you doing to treat your CH?  Maybe if your attacks were more under control it would help your frame of mind at least a little.  

Thanks CH father, Currently I am just going with Vitamin D (oil) @ 10k IU ...I feel it has lowered the frequency. I am reluctant to do the drugs as I have yet to find a neurologist or DR to help guide me through them. Furthermore am terrified of the potential slap back affect. I have at hand 5mg Zomig Nasal Sprays, as well as pregabalin 25mgs / propranolol HCL 40mg/  Mylan-Verapamil SR 240mg.  I've decided to use to the Zomig tonight if the pain becomes uncontrollable tonight. Edit: I am desperately trying to get Oxygen as well but my neuro said that he would not prescribe oxygen and told me to use the drugs first...

[mikeh2017]

5 hours ago, spiny said:

You need to do everything that you can to get them under control - for yourself and your family. Where is your O2? Are you using it in the best way possible? What are you taking for your CH currently? There are many ways to reduce the pain or actually kill the cycle.Please, allow us to help you find your way back to life. 

I have been trying to get oxygen but so far, have been stonewalled as my neuro here refused to prescribe it.... I am a new arrival to Canada and learning how the Canadian healthcare system works (during COVID) has been depressing. Luckily today after much searching I found a PCP to be my family Dr. I am hoping that he will be able to prescribe the oxygen ASAP.

 

[mikeh2017]

Thank you all who replied for your concern, comments and suggestions. I cannot say how much this means to me, because I know I am not facing this alone. The commuinty on clusterbusters keeps me sane. You guys are out there. Only you understand. Thank you without end. 

[jon019]

...there isn't much at CB that isn't golden...the responses you've received above are among the best I've seen and should be in a text book...and I'm an old guy on these forums...

...whatever you need to do to get O2...DO IT!....if ya can't find a doc with the simple smarts enough to look up THE PRIMARY abortive  (next to or along with triptans) as recognized in the literature and real world...then you're gonna have to take up a welding hobby....

...the very first time you successfully abort a hit with OXYGEN, as the pain drains away like fricken' water down a tube.... you WILL cry with joy....and probably curse whoever stood in the way of getting it in the first place. 1982 was my first...I can still get teary remembering..

...many of us find that an energy drink alone or in combo with the O2 is incredibly effective in aborting or lessening a hit...

.....I am concerned with your listed drug cocktail...with the exception of Zomig, which is my abort of last resort and highly treasured...in the unlikely case that one of these "prevents" works you won't know WHICH one, and you'll ride the merry go round forever (especially if your cycle ends on its own anyway).

...pregabalin (Lyrica) has a very low success rate and some crummy side effects...propranolol is an old  drug (first drug tried on me nearly 40 yrs ago) that sometimes works for migraineurs and rarely, if ever, for clusterheads......verapamil can be effective (was for me for a while) but SR is extended release with much fewer reports of effectiveness, you want the immediate release, and the sweet spot for most is 480 mg/dy in divided doses, some (my case) go up over 1000 mg to find relief in high cycle...(heart rhythm should be monitored)...

...put the D3 regimen and/or mm in your bag of tricks and the above may be moot....

best

jonathan

[SoCalCH]

2 hours ago, mikeh2017 said:

my neuro said that he would not prescribe oxygen and told me to use the drugs first...

You need a new doctor. 

[jon019]

3 minutes ago, SoCalCH said:

You need a new doctor. 

 Yup...YESTERDAY!!!

[FunTimes]

Not much to add to all the post above. My wife will kind of be on standby in the background. check on my when she knows I am having a cluster just by walking by, if I raise my hand of make any type of movement in her direction she knows I need or want something. She has a idea of things I might want during a cluster and will just go through the list until I give a thumbs up or nod my head. It is very strange for both parties I guess. For me I don't want to disrupt anyone else life with my condition but at the same time I don't want to be alone. My wife does not want to bother me by sitting in a chair looking at me the whole time abut does not want to leave me all alone incase I needed something. It is a tight line we all walk on and you will just need to find a way to compromise and let it all go. Kind of like you said freeness of death goes away with the pain try to let everything associated with the cluster go away with the pain. Do not hold a grudge towards anyone trying to help in regards to how they reacted to your headache, if you didnt like it just explain how to make it better next time. 

Like Jon mentioned if you can not get that 02 script take up welding and give the 5hr energy drinks a try they work great for me.

Best of luck to you and your family,

[Pebblesthecorgi]

Clusters suck and are immutable part of our existence.  I fully agree with advice given.  There is no way in hell you can ever get anyone to appreciate the pain or come close to understanding unless its a fellow clusterhead.  Even then our experience is our own.  People think we exaggerate, embellish or plain seek attention.  Of course thats not true at all.  The bigger issue is anyone who has experienced the pain of childbirth, kidney stones, gout, a broken limb or othe painful event usually only has it once twice or a few times.  We get way worse over and over and over.  The way I deal is by trying to be my best self and carry on while in cycle as normally as possible.  I do my best to not let the beast win.  I do tell my staff when I'm in cycle so they understand my asshole self has a reason but I never expect anyone to understand; s\cause they can't.  Yo must constantly work to be the best you and avoid self pity at all cost.  Ignore the well intended suggestions of the essential oil, ibuprofen, gratuitous "i have that too",    Forgive them for theres no way they can do anything but leave you alone

 

[SoCalCH]

@mikeh2017 At the risk of beating a dead horse, you 100% must get oxygen. It is the only thing that, for me, makes this curse manageable. I hope you're keeping your head up today and enjoying whatever pain free time you have. That's really the only way in which I feel I'm winning the battle.

As for your original question I just try to immune my wife and family as much as possible. That becomes more doable with an effective abortive. Doesn't hurt that my attacks are nearly all while my wife sleeps.

Best of luck and keep coming back. 

[mikeh2017]

5 hours ago, SoCalCH said:

@mikeh2017 At the risk of beating a dead horse, you 100% must get oxygen. It is the only thing that, for me, makes this curse manageable. I hope you're keeping your head up today and enjoying whatever pain free time you have. That's really the only way in which I feel I'm winning the battle.

As for your original question I just try to immune my wife and family as much as possible. That becomes more doable with an effective abortive. Doesn't hurt that my attacks are nearly all while my wife sleeps.

Best of luck and keep coming back. 

 

23 hours ago, jon019 said:

...there isn't much at CB that isn't golden...the responses you've received above are among the best I've seen and should be in a text book...and I'm an old guy on these forums...

...whatever you need to do to get O2...DO IT!....if ya can't find a doc with the simple smarts enough to look up THE PRIMARY abortive  (next to or along with triptans) as recognized in the literature and real world...then you're gonna have to take up a welding hobby....

...the very first time you successfully abort a hit with OXYGEN, as the pain drains away like fricken' water down a tube.... you WILL cry with joy....and probably curse whoever stood in the way of getting it in the first place. 1982 was my first...I can still get teary remembering..

...many of us find that an energy drink alone or in combo with the O2 is incredibly effective in aborting or lessening a hit...

.....I am concerned with your listed drug cocktail...with the exception of Zomig, which is my abort of last resort and highly treasured...in the unlikely case that one of these "prevents" works you won't know WHICH one, and you'll ride the merry go round forever (especially if your cycle ends on its own anyway).

...pregabalin (Lyrica) has a very low success rate and some crummy side effects...propranolol is an old  drug (first drug tried on me nearly 40 yrs ago) that sometimes works for migraineurs and rarely, if ever, for clusterheads......verapamil can be effective (was for me for a while) but SR is extended release with much fewer reports of effectiveness, you want the immediate release, and the sweet spot for most is 480 mg/dy in divided doses, some (my case) go up over 1000 mg to find relief in high cycle...(heart rhythm should be monitored)...

...put the D3 regimen and/or mm in your bag of tricks and the above may be moot....

best

jonathan

Thank you Jonathan for the information and experience-  the good news, I've finally been able to find a PCP (family dr. as they call them here) who seems to be smart, sympathetic and open minded. My hope is that he will prescribe the O2 by early next week. I will seek out the verapamil instant release versions as soon as I can and talk to my Dr. about monitored use. I am just curious regarding the D3 regimen, I am taking about 10k+ IU per day (mainly in the early evening since my attacks generally come in @ 2-4 am.) is 10K enough? Also regarding all the different co-drugs e.g magnesium etc, what do those other drugs help to do? 

[mikeh2017]

5 hours ago, SoCalCH said:

@mikeh2017 At the risk of beating a dead horse, you 100% must get oxygen. It is the only thing that, for me, makes this curse manageable. I hope you're keeping your head up today and enjoying whatever pain free time you have. That's really the only way in which I feel I'm winning the battle.

As for your original question I just try to immune my wife and family as much as possible. That becomes more doable with an effective abortive. Doesn't hurt that my attacks are nearly all while my wife sleeps.

Best of luck and keep coming back. 

Today was a good day  . Thanks SoCalCH.

[jon019]

.....re D3 regimen i am of the flock...Batch (xxx) is the good shepherd...he will more than likely be along shortly, you can start with the first (has been updated) post by CHfather in this thread: 

 

[xxx]

Hey Mike,

Vitamin D3 is not a monotherapy.  To be effective in preventing CH it needs all the cofactors illustated in the following photo of what I take and suggest to other CHers.

You can find the published treatment protocol at VitaminDWiki at the following link.

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Readers of my webpage at VitaminDWiki have downloaded 61,671 copies of the anti-inflammatory regimen CH and MH preventative treatment protocol since I posted it on 21 Jan 2017.  Dr. Mark Burish, MD, PhD,  Director, Will Erwin Headache Research Center, UT Houston, thought enough of this CH preventative treatment protocol and the medical evidence from the online survey of CHers taking the anti-inflammatory regimen to control their CH for the last 9 years, to publish an RCT on clinicaltrials.gov based on this treatment protocol.

https://www.clinicaltrials.gov/ct2/show/NCT04570475?sfpd_s=09%2F30%2F2020&sfpd_d=14

If you have any further questions about this regimen, please shoot me a PM

Take care and hang in there.

V/R, Batch

[Hhh]

Mine is awesome... my other half.  I'm 6 going on 7 years chronic... only a break for 2 weeks here and there If I'm lucky.  O2... your friend. 

My spouse gets me a roll if toilet paper... pillows to sit up in the bed... sets up the couch in case I pace... I'm more of a rocker.  Gets me a cold pack,  some water my energy drink and leaves unless I try to communicate. This did not happen right away I had to tell him over and over there's nothing he could do.  He knows now it'll be over... then it's back to regular life when I wander out whipped by the demon... but smiling with mascara running down my face... exhausted but smiling... best guy ever.  

You have to communicate with your partner what you need... or don't need and it'll get to be a norm... best of luck for your family...and pf days and nights

[xBoss]

Hang in there brother. 

[Jamesmsv]

You've already had the best answers but I wanted to give my 2 cents as it differs a bit. My CH started as I hit 30, and soon after had two children. Having the added load of a young family to support when you're struggling to keep your job because of CH can push it over the edge. 

I was close to suicide for a long time, when a chance but failed therapy helped me out the darkness. Back in the mid 2000s I had a sympathetic doctor but no official diagnosis. As a shot in the dark we agreed for me to try amitriptyline as it was used off-label for neuropathic pain. Although it didn't help much, and my doses were way below the usual for its supposed anti-depressant uses, I found that over a few months it gave me back the mental strength that CH drains from us so readily.

I stopped it when I was officially diagnosed, and moved onto Imitrex. Big mistake in my book, I am firmly of the belief that I received worse slap-backs because of that drug. Those 3 years were the worst of my life. I've been back on amitriptyline for 5 years and not touched sumitriptan since. 

However, this does bring complications. You must thoroughly research any drug you are taking and how it might interact with the options available to treat CH. Of course, also discuss it with a medical professional. In my case, I taper off the amitriptyline for 2 weeks before busting (mushrooms / RC seeds) and that works for me. There could still be a risk involved with that, but frankly I am wiling to roll the dice on that one for the benefits I have felt (and by extension, my family).

Good luck with everything. 

[MoxieGirl]

Hi Mike,

Has been a couple of months since your original post, I hope things have settled down a bit for you in that time. But, knowing the beast, it may not have.

The best way I've found to convey the level of pain to a non-clusterhead is this:

Most people I talk to have had at least 1 muscle cramp in their life, and it's usually a calf muscle. I start by asking them to think back to the worst muscle cramp they can remember, and get them to think about how suddenly the pain came on from out of nowhere, and how it was all consuming. They couldn't move, or speak or think about anything apart from the pain. For the thirty seconds or minute that it lasts, it becomes their entire world. 

I then ask them to imagine the pain being doubled. And then doubled again, so it is 4 times as painful as it was. Then, shrink the pain down to the size of a golf ball and shove it in your eye. Right in the inner corner where you get a brain-freeze attack from eating ice cream too fast (another good analogy). Now, instead of lasting 30 seconds, imagine that pain lasting 3 hours. 

At this point, you can usually see the realisation on their face. And you cap it off by saying that's a tenth of what a cluster attack feels like.

I also never call them cluster headaches, I always call them cluster attacks. Because that's how it feels, like I'm being attacked. I have headaches, I have migraines, this ain't them. I've also often said that if a headache were the Moon, and a migraine the Earth, then a cluster attack would be the Sun. 

When I was house-sharing with my best friend, she would get frustrated too that she couldn't help. We came up with a system that worked well for us.

During the actual attack, she'd just leave me alone. I'd normally go to my room and just be on my own to deal with the pain. There's nothing anyone can do, and just having someone around made me feel self conscious. But, as soon as the pain subsided, she'd be there with a blanket to wrap around me and a tall glass of cold water. My body temp normally fluctuates wildly after an attack, and having a blanket or bathrobe to wrap myself in was helpful, but sometimes I wasn't in a state of mind to get it myself. Also, I'd be extremely thirsty and dehydrated. As soon as I downed the first glass of water, she'd go and get me a second, and a third if I needed it. Lastly, she'd offer a hug and a shoulder to cry on. She'd sometimes bring a bit of chocolate too, which helps after an attack (I find). 

That worked really well for us. She found that she didn't feel guilty for leaving me to suffer on my own, there was nothing she could do anyway then. But as soon as the pain was gone, she was there for me when I needed someone most. 

Hope that helps.

Mox