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walking a fine line (Read 26361 times)
feisty
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walking a fine line
Jul 21st, 2014 at 2:14am
 
Hey folks,

Thanks for doing what you do here on this site and in this forum.

I've been married for 2 years, to a wonderful and difficult husband who I only had a long distance romance with beforehand. I knew about his cluster headaches, which started in approx 2010, but his cycles were short, the timing of the attacks was predictable, and the attack tended to last 20 min. He was diagnosed at a fancy headache clinic in NE US, but apparently the only treatments he tried were narcotic pain meds which didn't work and had bad side effects. So he stopped those and decided to basically tough it out.

He had his cycles in October following the daylight savings time change. In 2012 he had a typical cycle - the first I witnessed. I was concerned. I encouraged him to seek treatment but he was still figuring out the medical system here in Canada. After the cycle was over we were both relieved and got on with our lives. In fall of 2013, he seemed to have an attenuated cycle. We didn't know about shadow headaches, but he seemed to have a longer cycle but with mostly shadows, not the full blown ones. We were optimistic that somehow his new life here in Canada was affecting his clusters in a positive way.

Then, a month ago, he started a new cycle. He's never had one in the summer before. We wonder if it was triggered by allergies? He doesn't normally have allergy attacks at this time of year but this year he does. It's also been a *really bad* attack.

I'll be honest, at first I didn't understand how the clusters were - I didn't fully realize that he was in a cycle. It would often happen at night. He'd retreat to the shower and tough it out. But it would affect him during the day with getting really grumpy due to sleep deprivation and stress. We were on a getaway and his moods ruined it but I still didn't get what was going on. Then one night it lasted for 90 minutes. He was crawling around, crying, and eventually vomiting from the pain.  Cry Horrifying. This is a man who went through KBG training in the former USSR - no sissy.

So it was at 3 AM in the morning that I decided that I HAD to intervene to get this stubborn man some treatment. I found out about oxygen therapy. The next morning I dragged him out of bed and to the doctor's (begged for an emergency appointment). I had to bully my husband to go, and bully him to let me sit in on the appointment. I had to give the doctor a crash course in cluster headaches and we left with an oxygen prescription. After driving all over we finally got the equipment. My exhusband, a firefighter, found out what was going on and gave us a nonrebreather mask. Fortunately because the oxygen company sold my husband the wrong mask.

That night, my husband finally got some relief from the attack using oxygen. Thank goodness.
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feisty
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Re: walking a fine line
Reply #1 - Jul 21st, 2014 at 2:25am
 
But this is no picnic. The timing of the headaches this cycle is less predictable. Once he had to pull over during an attack at the end of his work day. We went to a New Order concert and he had an attack there - complete with vomiting in the bathroom due to the pain. He seems to be getting a shadow in the early evening, then a full attack wakes him up after he goes to sleep. I don't know if the early evening attacks are actually full headaches that are getting staved off by oxygen.

He is tired and demoralized. He has a high stress job that doesn't let up. I am trying to get him to the doctor again for a referral to a headache doctor and he won't give me a time window that works for an appointment. He is embarrassed about using oxygen and would never take tanks with him in his car or at work.

I am concerned about the change in pattern. The cycle is lasting a long time, the attacks are long, and often more than one per time - atypical for him.

I have children (8 and 10) and this whole situation is hard on our family. I've cancelled a camping trip and feel like we're going through an "invisible" crisis with this. I feel like I can't ask my husband for anything, or expect anything.

I've started my husband on the vitamins - still tweaking and setting it up but I got the ball rolling on the main ones. Fortunately he is not resisting that.

This is just another sucky thing in my complicated life. My son has ADHD, learning disabilities, and other issues, we're homeschooling, and I share custody with my children's father, which constantly wreaks havoc on my life. Sorry to whine.
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feisty
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Re: walking a fine line
Reply #2 - Jul 21st, 2014 at 2:29am
 
But the most important thing is...I am concerned about the pain my husband is going through. He is stoic, that's for sure. But his life is stressful and this is really wearing him down. I wish he could just have some peace for a while - be painfree and take a holiday from everything.

I've really appreciated reading about people's experiences here. It's given me insight into what my husband is going through. It's not just the attacks, but dreading the next one and feeling "broken" - those are just as bad for my husband I think.

Thanks for listening if you managed to get through all that. Wordy, always wordy I am.
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maz
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Re: walking a fine line
Reply #3 - Jul 21st, 2014 at 11:50am
 
We hear you feisty,

Although we are all different, your husbands attacks are pretty typical. But be warned it shifts and changes all the time so you never know what to expect.

As your doctor was agreeable to the oxygen (some are not) I would go to see him again. Ask for imitrex  auto injections. It may be called sumatriptan or imigran where you live. It comes in tablet form and nasal spray too, but the tablets take too long to get into your system to be of much help. I have not tried the spray, but I can tell you the injections are like a miracle. They will completely stop the worst cluster in less than 10 minutes. You can only take 2 per day, so I save mine for when I'm out (I never ever leave home without them) and use the 02 at home. 

They are easy to use and small enough to go in your pocket, so he won't have any embarrassment with them. They don't hurt (much) just a pin prick, but compared to a CH it's a walk in the park. The 02 can be used at home where there is no one to see. I don't know what your medical system is like, or if you have to have insurance etc, but I warn you they are expensive. You should try to get hold of a few when he's not in cycle and that helps to spread the cost. Some people get rebound headaches from it, but any headache that lingers after the pain has gone (he will know the difference) is usually the kind that can be taken care of with over the counter stuff. Knowing you have pain relief that actually works relieves the constant fear too.

Please encourage him not to be embarrassed. It's just an illness that needs to be treated and it's not worth suffering through hours of endless pain  when the help is right there. When mine starts I'm straight on to the 02  and I don't care who sees me. And if he can stand a full blown CH then we know he's no sissy.

Also get some Red bull energy drinks. At the very first sign of pain - don't wait till it ramps up - slug down a cold one as fast as he can. It's the combination of caffiene and taurine in a sudden hit that does the trick, so any energy drink with those ingredients will do. It doesn't work for every one but lots of us get relief from it so it's always worth a try.

Thank you for caring. One thing we all have in common is how much we need our supporters. Bully him if you have to, to get him back to the doctors. Once he has spared the time to get this sorted out his life will be so much easier in every way. It might help too, if you explain it to the children because it can be quite scary if they witness an attack. I know some one with a 6 year old who sets up the 02, plumps up the cushions and administers the injections. It will make them feel good if they think they can help.

Stay strong because he needs you and know that you are not alone.Let us know how you progress.
Maz.
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feisty
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Re: walking a fine line
Reply #4 - Jul 21st, 2014 at 1:25pm
 
Thanks very much for your reply Maz. As you know, it's really hard to talk about this with people. First, it's not my condition. Second, it's tedious explaining that, "no, it's not a migraine". I've been concerned about how much this has affected our lives this cycle, and it feels good that you folks "get it".

Quote:
Ask for imitrex  auto injections. It may be called sumatriptan or imigran where you live.
Yes, that is my next goal - to get a non-O2 med for during an attack. My doctor is awesome because he is willing to listen and implement evidence-based medicine, but he is just a general practitioner so I'm not sure if he'll go that far in prescribing cluster meds. If he wants to refer to a specialist, we may have to wait for months to see a headache doctor. Maybe I can wheedle a tiny prescription out of him though - just for emergency use. I want to be more prepared now that dh's pattern has changed. We have a really important social event to attend for his work on Thursday - it's 4 hours stuck on a tiny boat with no privacy options. I can't imagine a worse situation for an attack to hit and we have no plan Sad .

Financially, we don't know how this is going to work out. We have some coverage of prescriptions but not sure whether they cover O2. We phoned the insurance company and they wouldn't tell me what is covered  Angry . So we are paying for everything and hoping. Not sure about the injections either. Usually tablet prescriptions would be covered, mostly.

Quote:
Also get some Red bull energy drinks.

I might bring one on the boat - better than nothing! He has been reluctant to try this because the sleep deprivation is a big part of what's dragging him down. He's a light sleeper to begin with.

My biggest frustration is trying to get medical help for a person who can't make ANY time in his schedule for a doctor's appointment  Roll Eyes . It's not my style to bully my husband. He knows I'm serious about this though.
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Smiley wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works!
 
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feisty
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Re: walking a fine line
Reply #5 - Jul 21st, 2014 at 1:54pm
 
I just posted in another thread about the vitD-allergy-cluster links. I'm really interested in this because dh's cycle seemed to have been triggered by pollen allergy at an atypical time of year. It's interesting to read via Batch that allergy bouts can deplete vit D - I just read confirmation of that by a local allergist in a news article. Makes sense! So the allergy triggers massive inflammation, which causes swelling of the arteries/nerves, which causes CH. If you can boost the immune system to prevent allergies, then you can theoretically prevent the whole cycle?

more pollen due to climate warming -> allergy bout -> DEPLETION OF VIT D -> allergies worse -> inflammation -> cluster headache cycle initiated
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« Last Edit: Jul 21st, 2014 at 2:00pm by feisty »  

Smiley wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works!
 
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maz
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Re: walking a fine line
Reply #6 - Jul 21st, 2014 at 1:56pm
 
Men are stubborn creatures aren't they. He will find the time eventually, when the CH is so bad he can't stand it any longer, or when he loses even more time from work. A couple of hours now could save a lot of time in the future. But it's his pain, and he will know when the time has come.

I don't know how things work over there, but here in the UK my GP prescribes the imitrex. The neuro I saw offered me absolutely nothing and didn't help me at all, but fortunately my GP is very open to suggestions and is willing to try anything to help me.

If you can get it, it would be good to take on your boat trip. I usually do it in my leg but the arm would do just as well. You would just have to be as discrete as possible if there is no privacy.

I know what you mean about redbull. It's not exactly conducive to sleep, but I look at it this way ; Once the pain starts you're going to be awake anyway. Might as well be awake without the pain.

The imitrex tablets , while not much good when the pain starts can sometimes be helpful if you take it at bed time, to cut out the night time attack. It tells you on the instruction leaflet that it doesn't work if you take it in advance, and it doesn't for every one, but it does for me.

Hang in there
Maz.
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feisty
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Re: walking a fine line
Reply #7 - Jul 21st, 2014 at 2:02pm
 
Very helpful Maz.

If we got the injection he could use it in the bathroom on the boat. But if he had a vomiting, sweating bullets, writhing attack like he did at the concert...that would be really awkward for him.
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feisty
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Re: walking a fine line
Reply #8 - Jul 21st, 2014 at 2:50pm
 
Other weirdness. I am complaining to the oxygen supply company because they tried to deliver a tank base to me that had large brown smears on it  Shocked . I don't want to know what that was but I refused delivery - then wiped down the tanks with rubbing alcohol (all I had). There was visible dirt on my cloth after wiping. Now I have to worry about this medical equipment being a biohazard?  Shocked . Didn't even occur to me with the first two sets of tanks.
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feisty
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Re: walking a fine line
Reply #9 - Jul 21st, 2014 at 3:30pm
 
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« Last Edit: Jul 22nd, 2014 at 2:14am by feisty »  

Smiley wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works!
 
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maz
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Re: walking a fine line
Reply #10 - Jul 21st, 2014 at 5:30pm
 
Yes the bathroom would be ideal. If he gave himself the injection fast enough - at the first hint of an attack then it wouldn't ramp up the way you describe. But if he couldn't get to it till it was bad, maybe you could do it for him. It will take the pain away in 5-10minutes.

They are not a syringe, so very easy to use. Some of them have to be loaded first, but you could do that part. Then just press the button on the top. Some come already loaded and look like a big pen. Again, just a button to press. Like I said in a previous post, I know a six year old who does it for her mum.

I was very squeemish and scared the first time I used one, but they soon became my new best friend. It's never pleasant getting an injection but believe me it's a whole lot better than a CH.

Good luck. Let us know how you get on.
Maz.
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feisty
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Re: walking a fine line
Reply #11 - Jul 21st, 2014 at 6:01pm
 
Thanks for the tips Maz. You make it sound less intimidating Smiley
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feisty
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Re: walking a fine line
Reply #12 - Jul 22nd, 2014 at 2:18am
 
Dh is flatly refusing pursuing the imitrex auto injections. I guess he was prescribed them in the US a few years ago. The warnings on the medication scared him and he is just not willing to go there.

Actually, he is also very annoyed that I have been pushing hard on this stuff lately. I need to back off.

I think I will concentrate on getting him the D25(OH) test and the full and correct anti inflammation regime. The rest will have to wait until and if he is ready.

sigh.
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Mike NZ
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Re: walking a fine line
Reply #13 - Jul 22nd, 2014 at 4:07am
 
It can't be easy being a supporter never mind when the person with CH is cautious about being helped. Thank you for trying though as those with CH know how it equally can't always be easy having it either.

When reading warnings on any medication it is essential to not just look at what can go wrong but the frequency at which it happens to get a real understanding of the risk involved. Can you imagine what the warning label on a car, helicopter or even a bed would be given that people die in them every year?

I'd work on the vitamin D3 route though as that has worked very well for a lot of people. My oxygen rig is gathering more dust and my imitrex injections only ever get used for migraines, so hopefully he gets similar results.
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Re: walking a fine line
Reply #14 - Jul 22nd, 2014 at 12:26pm
 
Thanks for your comments Mike. Yes, I think working the D3 route is really worthwhile - not only for clusters but possibly for overall health. Dh is not happy with his overall energy levels or moods.

Quote:
I'd work on the vitamin D3 route though as that has worked very well for a lot of people. My oxygen rig is gathering more dust and my imitrex injections only ever get used for migraines, so hopefully he gets similar results.
That is just so awesome Smiley

Quote:
When reading warnings on any medication it is essential to not just look at what can go wrong but the frequency at which it happens to get a real understanding of the risk involved.
I think my dh understands that the risks need to be taken in context. From his perspective, though, he is weighing the risks of having a CH (no risk) vs injection (death). I think his reasoning is faulty, though, because even if he can tough it through an attack, not having appropriate medications is having a big impact on his life.

Well, I am so grateful for oxygen and so glad that I got that organized for him. And I am glad that he is willing to go along with the supplements.
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Re: walking a fine line
Reply #15 - Jul 22nd, 2014 at 12:31pm
 
Last night was really rough. When I got home around 9:30 PM, dh was in a really good mood because he hadn't had the shadow headache he has been getting in the early evenings lately. Unfortunately I annoyed him by talking about CH stuff when he just wanted to not think about it. Then he got a full blown CH at midnight (woke him up), and then another full blown CH at 2 AM. Both went on for a while. He got up and went to work today...sooo exhausted. I wish he had a job where he could "lay low" sometimes. His week is full of clients meetings, site visits, etc. - no reprieve.
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maz
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Re: walking a fine line
Reply #16 - Jul 22nd, 2014 at 2:09pm
 
I wish there was something else I could suggest that would help. If he had the injections he could be asleep again ten minutes later. I guess you can lead a horse to water, but you can't make him drink.

If he carries on without accepting help he won't be able to work eventually anyway, and all this suffering now will have been for nothing. But as I said before it's his pain and he will know when enough is enough.

If I were you now I would back off because he clearly wants to do it on his own, but be there when he eventually admits that he needs help. And he will !!

You need to take care of yourself too
Maz.
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Re: walking a fine line
Reply #17 - Jul 22nd, 2014 at 3:17pm
 
Thanks Maz. I think you are right.
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Re: walking a fine line
Reply #18 - Jul 22nd, 2014 at 6:48pm
 
feisty wrote on Jul 22nd, 2014 at 3:17pm:
Thanks Maz. I think you are right.


I too think Maz is right.

As a supporter there is only so much you can do, no matter what you try. It needs the person being supported to want things to happen. This isn't anything CH specific as the same thing can apply to almost anything.
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Re: walking a fine line
Reply #19 - Jul 23rd, 2014 at 12:25am
 
Mike NZ wrote on Jul 22nd, 2014 at 6:48pm:
It needs the person being supported to want things to happen. This isn't anything CH specific as the same thing can apply to almost anything.
So true. Generally I really try not to get involved in dh's business, unless he asks for my help. This has been a rare exception...hence me walking a fine line Wink .

I pleased with myself. I ordered the final remaining supplements that we needed, and I ordered the home blood test. So it's full steam ahead on the supplement regimen at least.
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Re: walking a fine line
Reply #20 - Jul 24th, 2014 at 2:26am
 
Dh only has a quarter of a tank left of the M tank that was delivered on Saturday. Poor guy Sad . He is not even doing very high flow, only about 12 lpm. I guess I will do the long drive to pick up more tomorrow because the next scheduled delivery is on Saturday.

I have a bad feeling that oxygen isn't going to be covered by our extended insurance.

And that 4 hour boat tour tomorrow? I'll have a Red Bull in my purse, but we have no other plan for if an attack hits. He's been getting shadows during that time period almost every day.
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Re: walking a fine line
Reply #21 - Jul 24th, 2014 at 4:41am
 
feisty wrote on Jul 24th, 2014 at 2:26am:
Dh only has a quarter of a tank left of the M tank that was delivered on Saturday. Poor guy Sad . He is not even doing very high flow, only about 12 lpm.

This may be a false economy as many folk get little relief until 15-25 lpm.

Consider cranking up the volume and using less O2 for a greater effect
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Re: walking a fine line
Reply #22 - Jul 24th, 2014 at 4:48am
 
I agree with Brian. If he uses a higher flow he will need to be on it for less time, so may in fact use less.
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Re: walking a fine line
Reply #23 - Jul 25th, 2014 at 5:20am
 
I've two regulators, one which goes to 15lpm and one to 25lpm. The 25lpm will kill a CH off in almost a third of the time of the 15lpm so it uses a lot less oxygen to do so.
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Re: walking a fine line
Reply #24 - Jul 25th, 2014 at 2:50pm
 
Thanks for the advice to use higher flow to ward off an attack. I've talked to dh about this. I think what is happening is that he is trying to lie down and regulate his breathing to a "calm" rate and breathing the O2 thus. At that rate he would not be able to breathe more than 12 lpm. I think he is aware of the advice to "hyperventilate" O2 at a higher flow rate. For some reason he is resistant to trying that. I'm not sure why.

Maybe it is that he is super tired and when the attack hits he just wants to take what feels like the "path of least resistance"? The nighttime attacks are really dragging him down. I will keep reading about O2 technique and drop hints when appropriate.

Keeping O2 on hand is turning out to be complicated. They only deliver every two weeks. Yesterday I picked up 2 M tanks (long drive on a toll highway), but they were NOT happy about my transporting them horizontally in the car. They "have rules"  Roll Eyes . I don't know how dh would deal with this if he was trying to do this by himself while sleep deprived and working full time.
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« Last Edit: Jul 25th, 2014 at 2:52pm by feisty »  

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