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.  :'( 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.

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.

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.

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.

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 :( .

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  >:( . So we are paying for everything and hoping. Not sure about the injections either. Usually tablet prescriptions would be covered, mostly.


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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  ::) . It's not my style to bully my husband. He knows I'm serious about this though.

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

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.

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.

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  :o . 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?  :o . Didn't even occur to me with the first two sets of tanks.

{.}

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.

Thanks for the tips Maz. You make it sound less intimidating :)

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.

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.

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.


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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 :)


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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.

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.

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.

Thanks Maz. I think you are right.

feisty wrote on Jul 22^nd, 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.

Mike NZ wrote on Jul 22^nd, 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 ;) .

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.

Dh only has a quarter of a tank left of the M tank that was delivered on Saturday. Poor guy :( . 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.

feisty wrote on Jul 24^th, 2014 at 2:26am:

Dh only has a quarter of a tank left of the M tank that was delivered on Saturday. Poor guy :( . 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

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.

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.

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"  ::) . 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.

An interesting thing happened yesterday. I was dreading the boat cruise that we went on for 3.5 hours between 530-9 PM - because he usually uses oxygen during that time to ward off a shadow/cluster attack. But...nothing  :) . He got the shadow soon after getting home though (late) and the full attack in the night.

Just 2 weeks ago, a similar thing happened. An important work party 5-10 PM - the attack was just starting at the end and we called a cab right away.

We otherwise we have avoiding going out during this cycle due to dh being tired all the time, and wanting to be close to O2.

It's making us wonder about the timing/triggers.

Is the home a trigger somehow? Indoor allergies? There are allergens - probably dust mite issues in the bedroom due to old carpet, and there are 2 guinea pigs with hay in the lining room (probably some mold associated with wet hay).

Or is dh getting stressed at home? There are stressors too - talking about CH, rowdy kids, etc.

There is no point trying to take the 02 calmly. He should have the highest flow he can, and huff it up as fast as he can. It's the hyperventilation that constricts the blood vessel which is causing the trouble. The pain would be gone in a few minutes and he could go back to sleep.

Your husband is not really being fair to you (sorry, I don't mean to criticize). You are going to so much trouble to help him, not to mention the worry, yet he is resisting at every turn. He wouldn't be sleep deprived if he followed the advice from us. We are experts at this and have learned over time how to handle it. And most importantly, we learned from each other.

You say you don't know how he would manage on his own, but perhaps it's time to let him try. Then he may appreciate the help that's being offered. Don't abandon him of course, just let him get on with it for a while. Tough love.

I'm so sorry if this sounds harsh. I wouldn't want to hurt your feelings for the world, or his, but I just don't understand why someone would rather suffer such hell, than do it the easy way. But as I've said before, it's his pain.

I hope I haven't offended you, that wasn't my intention at all. I hope his cycle ends soon, maybe he will listen to reason when he's not in so much pain and stress.
Please stay in touch here. You need us even if he thinks he doesn't.
Maz.

I'm not offended at all maz. Thanks for being honest.


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There is no point trying to take the 02 calmly. He should have the highest flow he can, and huff it up as fast as he can. It's the hyperventilation that constricts the blood vessel which is causing the trouble. The pain would be gone in a few minutes and he could go back to sleep.

That makes sense to me. I really appreciate the information and experience that is shared here.

He insisted that cold packs wouldn't help him but when he actually tried it, they helped!


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Please stay in touch here. You need us even if he thinks he doesn't.

Thank you, I appreciate the support and understanding very much.

And to offer a different perspective for a bit of balance. I can also see why your husband is thinking the way he is. CH, especially when initially untreated, does get to you. It has a way of grinding you down and just normal life stuff can get too hard. This should be no surprise when you consider what is happening. So trying to do too much all at once, no matter how valid the suggestions are, can get too much, so it can be a matter of taking small steps, with each improvement helping to put a slide to the downward spiral.

Or to put it another way, huge mountains like Everest are not climbed by giving someone a pile of mountaineering books written by experts, a backpack of equipment from the best climbing shop, etc... They are climbed by learning to climb small hills, then slightly larger ones and finally the biggest ones.

Mike NZ wrote on Jul 25^th, 2014 at 8:22pm:

CH, especially when initially untreated, does get to you. It has a way of grinding you down and just normal life stuff can get too hard.

Yup. He's there  :( . I think that's why he is having trouble problem solving here - something he's normally great at.

Today he actually had an attack during a meeting at work. It's been rare that he's had attacks during work hours this cycle and in the past. He had to leave an walk around until it subsided. When he told me about it he just looked so hopeless. After dinner he had a shower and went straight to bed.

Five days into the supplement regimen and it feels like things are getting worse, not better :( .

I'm only a ClusterHead and would never last seconds as a Supporter (don't know how you do it) but I can understand how hubby might be feeling just now.

When the fight is on I can't stand anyone near me and the only thing worse is someone 'trying to help'. They don't understand, they can't understand, and it's impossible for me to wrestle a monster while trying to explain.

I truly dips me lid to anyone so considerate toward us as you've been, Feisty, but I beg you take just one step back and give him a bit of fighting room.

You are truly to be admired for your efforts in learning about this dread disease, and all your knowledge will matter down the track. I just ask you allow him a little space in the meantime.

The work you've put in and what you've learned will matter.

Please, just give it time, and leave him room to move.

We truly care for our supporters,

Brian down under.

Very useful perspective Brian. Of course, I never talk to dh during an attack. But...it feels like this cycle has taken over our lives in a way that I never experienced before. I am recognizing more and more that dh is coping with this 24/7, not just during attacks. I don't think he was prepared for how the pattern has changed for him. There's nothing he hates more than feeling out of control. He is not a fan of needing others either.

I'll hand him supplements and try to give him more space.

I think dh is having that thing where REM sleep triggers an attack. His typical pattern these days is an evening shadow, with a full attack about an hour or so after he falls asleep - that one is a doozy because he doesn't wake up until it's full-on. If he goes to sleep early, like last night, the attack hits early.

I think there's still a lot of denial for dh. Today he seemed so happy after dinner because he hadn't had an attack all day. He settled down and started watching a music concert DVD. The attack started at 9:30 PM. He said he was hoping it wouldn't come, that he was just trying to enjoy himself. He sat there clutching his head, not heading for the O2 until it got really bad. Then he had tough time settling it down - sometimes sobbing with the pain.

His whole day is work, and pain management. There is no time or energy left for enjoyment, relaxation - even today he was working an extra contract.

Hard to watch.

Next time get him on to the O2 much earlier, at the first sign of an attack. The faster you start it the quicker it works. Huff it down fast and after 10 minutes - gone. Stay on the O2 for another 10 minutes to be sure. I am a few days into a cycle now and with the O2 I've not had an attack worse than kip 4. See tab on left of your screen titled "kip scale".  If he doesn't go to the O2 immediately, bring it to him.

I remember well how hard it was to cope when I was working (retired now) but with the correct pain management his life need not be so disrupted. O2 at home, injections for when he's out and the attacks will stay relatively short, and mild. Only minimal tiredness, much less fear and stress waiting for the next one, no more sobbing with pain, and plenty of energy left for the good things in life. I am a few days into my cycle right now, and yesterday, I had 5 attacks through the night and another 3 during the day. I jumped on the O2 quickly, and got back to sleep soon, so although I had a disturbed night I did manage to get some sleep. During the day I went shopping (injection in my bag) did some house cleaning, made 7 pounds of jam, had a visit from my grand daughter, and enjoyed an evening of TV. Yes, I was tired, but not so much that I couldn't cope. There is life between the attacks. 

There are triggers for this thing. Alcohol is typical for many whilst in cycle, but OK at other times. Excessive heat is often another. But the problem is the triggers are different for all of us. If you can figure out what your husbands are it would be great but don't get too hopefull. In seven years I still don't know what causes mine as they seem totally random. Hot, cold, summer, winter, working, relaxing, sleeping, awake - doesn't seem to make much difference to me. Finding his triggers won't stop the thing, it just helps to avoid some of the attacks.

Waking up in pain about an hour after you go to sleep is very typical of CH. As your husband only had one attack yesterday maybe his cycle is slowing down and coming to an end. I hope so. When it does, don't get complacent. BE READY FOR NEXT TIME.

Good luck - keep us informed.
Maz.

Thanks Maz. You truly are the voice of experience. I'm sorry you're going through a cycle :( . It sounds like you really have found ways to manage it though - it sounds like managing is the key here.

Dh's stressful work life really is a big part of the problem here. He's an associate in his firm now and the buck stops with him when clients have needs. A key employee quit and dh needs to clone himself several times over.

He ended up having two attacks yesterday - one hit at 9:30 PM, then he went to sleep when it settled down, then another hit a while after he fell asleep. Then he had an allergy attack in the middle of the night and "couldn't breathe" (nose issues) and woke up with a sinus headache.

Triggers are hard to identify. Hot baths seem to be a problem - but he hasn't been doing this cycle that as it's summer. He drinks a lot of beer, but he tried doing without in previous cycles and it didn't seem to make a difference. And he's had attacks before having a beer during this cycle as well. You can drive yourself crazy trying to figure out it. This morning he says that relaxing might be a trigger  ::) .

feisty wrote on Jul 27^th, 2014 at 3:12pm:

Dh's stressful work life really is a big part of the problem here. He's an associate in his firm now and the buck stops with him when clients have needs. A key employee quit and dh needs to clone himself several times over.

Stress is a trigger for many people with CH, although quite how it affects us varies. For some it is times of high stress, for others it is low stress and for others it is the transition between the two.

Ask Dh if he was managing someone going through what he is doing if he'd be expecting him to do all that you're suggesting or would he go with what he is doing? Maybe that might be a way to get him to see things differently?

Yes you will drive yourself crazy trying to figure it out. I don't try any more - I just roll with the punches.

In the early days I didn't have the correct meds and when I was in cycle I was 24/7 either in pain or afraid of the next one, or worring about the cause, or panicking to get important things done between attacks. I would wait for an attack, get through it, and go shopping the minute it had finished in the hope I could get home again before the next one. I was scared to go out, scared to meet up with friends - so no social life, not even a coffee,I didn't see my only grandchild for weeks because I didn't want to frighten her but she thought I stopped loving her and didn't want to see her any more.I was scared to go to bed and even more scared of getting up the next morning and facing another day of misery. FOR THE REST OF MY LIFE.  I was in a very dark place and I will admit I contemplated the unthinkable on more than one occasion.

It affected every one, not just me. During one particularly bad attack which lasted 16 hours I took every pill and potion I could find, to the point where I was overdosed on several different meds at once. I watched my husband throw away all his own (much needed) medicine so I couldn't take it, while my 40 year old son sat on my bed and cried like a baby. As I've said on these threads before, While my head exploded, my heart broke.

But then, I got sumatriptan (imitrex) and that made a big difference, although you can only have 2 injections a day and I was having up to 8 attacks. All the same, it was a big help. Then in february this year I got the 02. You can use that as often as you need to so it has transformed my life. I've used it 4 times today (10.30 pm now) and no doubt I will hugging the tank a few more times during the night, but now I look upon it as a recurring  inconvenience rather than a reason to do something terrible. I won't say it never gets me down because it does, but I pull myself together and don't let it consume me any more.

So, I have accepted that this thing in my head will never go away but I have weapons now. So far, since february I have won every battle. I don't worry and stress over it any more, and I don't try to figure it out, because all that stuff consumes your life. I just DO it, 20 minutes at a time, instead of all day every day. I deal with it when it comes and when it's over I go right back to what I was doing before, and try not to even think about it till next time. If I'm out I just go to the nearest ladies room with my injection, and if I'm home I listen to Meatloaf full blast while the O2 does the rest.

Yes management is the key and your husband doesn't need the stresses of CH on top of his job. He may not be able to control the stresses of work but he can control the CH with the correct management. I expect he feels sorry for himself - I know I did big time, but once he accepts that he can control it he will learn to live with it and he will get his life back. And you'll get yours.

Keep fighting and stay strong. You can beat it.
Maz.

I feisty,
             Been following your despair in your threads !
I was one of those stubborn males that wouldn't accept my condition !!!!   ;)
Just wanted to say,  be strong, your doing a great job !
supporters like you are what helps us get thru this demon !
he may not appreciate everything your doing now, but he will.  And until that time, " we all appreciate your efforts in all your doing for him"  your a champion !
and as you've seen, we are all here for you in what ever advise or re assurance you need !!
kindest regards
col

Hi Feisty
I found this site and treatment because of someone like you, my wife.
I was stubborn and endured months of pain because of it.
She researched relentlessly and then put a firecracker under me.
I thank her for what she did and I thank you for what you are doing.
Stay strong, you are in the right place.
Alan

" you truly are the voice of experience"

I learned what I know from others here with far more experience and knowledge than me. Any credit due should go to them.

Thanks Mike, maz, shortstraw, blacklab :) . What some of you have endured  :o . Many CH sufferers have it MUCH worse than dh. That has been an eye opener for me - and scary that it could get worse.


Mike NZ wrote on Jul 27^th, 2014 at 5:45pm:

feisty wrote on Jul 27th, 2014 at 3:12pm: Stress is a trigger for many people with CH, although quite how it affects us varies. For some it is times of high stress, for others it is low stress and for others it is the transition between the two. Yes, I wonder about that, although it seems like things have been high stress for a long time. Mike NZ wrote on Jul 27th, 2014 at 5:45pm: feisty wrote on Jul 27th, 2014 at 3:12pm: Ask Dh if he was managing someone going through what he is doing if he'd be expecting him to do all that you're suggesting or would he go with what he is doing? Maybe that might be a way to get him to see things differently? That would be a good way to get my head bit off ;) . maz wrote on Jul 27th, 2014 at 6:08pm: I was in a very dark place and I will admit I contemplated the unthinkable on more than one occasion. Thank you for sharing your story. I can truly understand how a person could get there :( . I am so glad you have O2 now. It's not a cure but this cycle I don't see how dh could have gone without O2 and toughed it out without going to a very very dark place. [quote author=69676A6860676A690B0 link=1405923272/38#38 date=1406524019]I was one of those stubborn males that wouldn't accept my condition !!!!   ;) Col, stubborn males have some good points too :) . I see you are working really hard on the supplement solution - that is awesome. [quote author=677C7B66606760667563140 link=1405923272/39#39 date=1406542792]She researched relentlessly and then put a firecracker under me. I thank her for what she did and I thank you for what you are doing.

Alan, I'm sure you're like my husband - you have earned the firecracker...and the loyalty from your wife.

I feel like I'm taking a lot of "air time" here on the forum  :-[ . I appreciate replies, but I don't expect replies every time I post. I just find it comforting to have somewhere to express my thoughts and feelings about this.

Last night was rough. Attacks at 9:30 PM, 11:30 PM, and 1:40 AM - the last two woke him up. Seems like what Batch describes here is happening:
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Dh started oxygen almost 4 weeks ago so I'm hoping that these re-attacks start tapering off. He is not using the oxygen properly though - he just breathes normally at 12/15, not hyperventilating at higher flow (he has the information on how to do it properly). He is doing the taper off at lower flow though.

Last night he messaged me from the other room:
"I feel like you married a broken man. I did not know I was so broken."
:(

Of course I don't see him that way and told him so. I asked him if he would be there for me if I had a health crisis - would he help me and still see me as the person he fell in love with? He said yes.

I use 15 lts per minute, but I don't hyperventilate.  It still works for me though. For what it's worth I do believe 15 is the lowest to get the desired effect.

Turn the dial up when he's not looking.  ;)

maz wrote on Jul 29^th, 2014 at 1:34pm:

Turn the dial up when he's not looking.  ;)

[smiley=biggrin.gif]

maz wrote on Jul 29^th, 2014 at 1:34pm:

Turn the dial up when he's not looking.  ;)

Just one step at a time, so there is a gradual transition?

He doesn't like the feeling of the bag filling up faster than he normally breathes.

Based on Batch's advice, I am upping the D3 loading sched. So far:

day 1-5 - 20000 IU
day 6 - 50000 IU
day 7 - 20000 IU
day 8-9 - 50000 IU

Another awful night. Attack at 9:30 which was easily aborted with O2. Dh was dreading the next expected one, and stayed up late and refused to relax. Did that ward off one of attacks? Went to bed at 12:30 AM, and woke up with a really bad attack at 2:10 AM that he was not able to fully abort with O2. Stayed up until 4 AM  :(

This IS getting worse.

last night:

one at 7:30 PM
a small one at 9:30 PM
the big one at 11:30 PM

This is getting worse. The cycle started just over a month ago, with 1-2 per day. Now it's 2-3 per day. I'm disappointed that dh is not responding to the anti-inflammatory regimen quickly, but really hoping that he's one of the folks whose response kicks in by the end of the second week.

He's gone through two M tanks and one E tank in the last week. He is starting to tweak is his breathing technique a bit and that does seem to help.

We were supposed to go for our first camping trip of the year in 9 days, and it looks like we'll either cancel or he won't join us :( . First, if his CH continues he can't really do without O2 and that wouldn't work with camping. Also, he had tonnes of holiday time coming to him, but he can't take the two days off that he'd have to due to his role in the company. And...he's just burned out.

I really hate that this CH hit in the summer (it's ALWAYS been in October before). Our summers are so short here and I was really hoping we'd have a chance to more as a family this year. Sorry to whine  :-[

It's OK to whine. You should have heard me last night. We all whine sometimes and we  will always listen cos we know how it is.

I had several hits last night, one of them lasting an hour and a half but I've been pain free all day thank god, but I dread going to sleep tonight. I have just made an appointment to see my Dr (usual 2 week wait) to get my O2 supply increased because what they give me barely lasts. I sucked up a whole tank full last night and STILL had to have an injection. I'm going to ask if I can get a higher flow too, but I don't think it's available here.

Where in Canada are you. South of England here, and we're having a heat wave which doesn't help when you feel like s**t.

Keep fighting one day at a time, and telling yourself it will end eventually. I do hope your poor husband gets his camping trip. Sounds like you could both do with a break.
Maz.

Oh, poor you Maz! That sounds brutal.  Watching my husband, the dread of the pain is almost as bad as the pain himself...it's like a huge psychological cringe  :( .

I hope you get more O2. It's amazing how much dh is going through. We don't even know if the insurance will pay for it yet  :o .

We're on the southwest coast so our summers are mild.  High of 25C today.

But dh is having a tough time with his allergies. Yesterday, he started violently sneezing within minutes of coming home. Then the CH hit half an hour later. His armchair is near the guinea pig cage which gets cleaned and bedding changed once a week. Even though all the windows are open, I am still wondering if there could be an allergy trigger with the hay, the animals themselves, or possibly some summer mold on the hay? And maybe the allergy trigger is a CH trigger? He rarely gets CH outside the home.

With your weather I hope you are drinking lots of water with enough electrolytes too!

Thanks for your support. I hope your husband is there for you.

Hi fiesty,
Yes my husband is a wonderful supporter. It breaks his heart that he can't do anything for me, but he keeps out of my way which is basically how I prefer to handle it. I know I only have to call and he'll be there. He felt rejected at first, but he understands now that I don't want to be fussed over.

Although I do dread the next one I try very hard not to think about it. As I said in another post I just deal with them as they occur. Otherwise your whole life is about CH, and I have better places to direct my energy. It completely took over in the beginning but I wanted my life back. You mustn't let it win.

Is it possible to put your pets in a different room for a while - as an experiment. If he sits right next to them, then no doubt he is breathing in thier dust/ scent/allergens. Lots of allergies are caused by animals. If you move them and he suddenly gets better then you'd know. How good would that be ?   :D
Maz

I don't know. Maybe we could board them out for a week? We live in a 1000 square foot apartment and the bedrooms are too small for their cage (which is the size of a small bed). I guess it's worth it huh?

Our bedroom has an old gross carpet in it too. You vacuum and steam clean but it feels like it's never really clean. I wonder if he has allergies to things in the bedroom and living room since he seems to get headaches in those places the most. Hmm...

Vacuum your mattress too. The dust that comes off the average mattress is unbelievable. And all that dust is dead skin cells and matress mites (no offense intended here - we all have them) and thier poo. Gross !!! Breathing in that stuff all night is bound to have an effect on those who suffer from allergies. (And can't be much good for those who don't).

Some years ago I had a guy come round to demonstrate some super duper vacuum he was selling. He put a clean, new bag in it and vacuumed my mattress. When he emptied the bag I couldn't believe my eyes. And the mattress was only a year old. Sadly at well over £500 I couldn't afford to buy the vacuum. Still, got a free clean up.

The temperature has been about 25c here today too - quite a bit cooler than it as been for the last few weeks. (This is not the typical english summer). A few years ago we went to Darwin Australia in December which is summer over there. One day the temp was 51c. That's hot.

maz wrote on Jul 31^st, 2014 at 5:13pm:

Vacuum your mattress too. The dust that comes off the average mattress is unbelievable. And all that dust is dead skin cells and matress mites (no offense intended here - we all have them) and thier poo.

Funny you should say that. My son got diagnosed with dust mite allergy so I learned a lot about it. We have a mattress pad and all of the bedding gets washed and sanitized (removes allergens) weekly in case that's the issue. But if dh has a dust mite allergy, apparently carpets are the #1 issue. We use a good vacuum with an allergy filter but still.

I started a thread about the allergy issue to get feedback about whether it's worthwhile putting a lot of effort into this particular project.

[smiley=arg.gif] Just found out from the home oxygen supplier that employer-based supplemental health insurance plans usually DON'T cover O2 for cluster headaches. We are spending about CAN$100/week on it  :o . We'll submit the receipts but I'm not optimistic. Maybe dh will take up welding.

Jeez. I don't know how much a CAN$ is worth in English £, but that sounds like a lot of money.

I've never understood your insurance systems. It always seems you are covered for everything except what you've got, regardless of what it is.

Here, we pay our National insurance contributions, deducted at a set rate from our pay. Aged over 60s and under 18s don't have to pay anything. Unemployed are automatically covered the same as every one else.

When you need drugs you pay a fixed amount which I think is currently £7.10. Again under 18s, over 60s and unemployed get it free. All hospital or doctor appointments and treatment are covered with nothing extra to pay. The only snag is long waiting lists, so some people who can afford to will  pay to "go private", but no one is left without treatment.
I haven't paid for pills, injections or O2 for over 4 years. I've had appointments with specialists and surgical procedures - all covered.

We complain like hell about our NHS, but I think I prefer our system to yours. I'm on a low income and just wouldn't be able to afford it. I read a lot of posts from America, from people who are absolutely desperate for help and have to go without because of insurance issues.

I know, it's crazy huh?

In Canada we pay relatively low set monthly fee for medical services which includes necessary medical care/hospitals. But it doesn't include drugs or treatments administered outside a hospital. Many have employer-based insurance to pay for those, but the exceptions are many.

feisty wrote on Jul 31^st, 2014 at 12:19pm:

Also, he had tonnes of holiday time coming to him, but he can't take the two days off that he'd have to due to his role in the company. And...he's just burned out.

Even without all the complications of CH this is an issue in its own right. Everyone needs to have time off to recharge. So add in CH as well and it is no wonder he is feeling burnt out.

He needs to address this too, which I know is easier said than done when everything seems to be going against you. He just needs to start making small, simple steps.

Thanks for chiming in Mike. Yes, he needs to work on stress, and holidays. A key employee left the company during this CH cycle, and it's fallen on dh to pick up the pieces. That really didn't help.

feisty, I've noticed in this string and other strings how many times you mentioned the animals in your apartment and allergies . Is there any way you can remove the animals and their cage/bedding from the apartment for a week or 2 and see if the allergy outbreaks stop?

Oxygen costs and insurance concerns... welder's oxygen is the same quality as medical oxygen.
Just don't mention it is for breathing. If they ask just say a friend is teaching you to weld. It comes in large tanks and smaller, more portable sizes.

It has been my belief that stress is not a trigger of attacks. It is the relaxing after the stressful period. Most of us get attacked during REM sleep. There's not much stress at that time of the night. Many get attacked 3 or more hours after the stressfull workday is finished. Holidays are relaxing times, or should be. So, stay stressed and never sleep. Ever. ;)

Hi BobG,

I talked about it with dh last night, and he thinks that our conversations about allergies, the guinea pigs, etc. are just grasping at straws. He is not convinced that he has a consistent trigger pattern and he wants to focus on just getting through this. I did offer to board out the guinea pigs for a week or two to try it out, but he didn't want to do that.

I'm going to look into welder's oxygen.


Quote:

It has been my belief that stress is not a trigger of attacks. It is the relaxing after the stressful period. Most of us get attacked during REM sleep. There's not much stress at that time of the night. Many get attacked 3 or more hours after the stressfull workday is finished.

This does seem to fit dh's pattern.


Quote:

So, stay stressed and never sleep. Ever.

::) I'll be sure to relay that advice  ;)

Thanks for your comments.

So, this is day 12 of the supplement regimen, and I keep thinking: "THIS will be the day that things start getting better". No luck so far, though Batch's info shows that quite a few have to wait for 2 weeks or more to see results.

Dh started sneezing today in his office, so I'm starting to think it's just a pollen issue, not an indoor allergen issue.. He's been home all day but didn't have any sneezing or nose issues until 7:30 PM tonight. No CH yet.

I've been getting allergies lately too - and I've never had them before. They say that climate changes is affecting allergenic pollen timing and profiles.

Haven't decided whether to go camping with the kids without dh next weekend (3 nights). He doesn't really NEED my help, but seems like the moral support helps him? Plus it is useful that I do all the cooking/errands/housework so when I'm away there's more for him to cope with. When I scheduled this camping it never occurred to me that things would be WORSE at this point.

If your hubby doesn't feel up to it why don't you take the kids camping without him. I know you need a break, and it would be a great pity to dissappoint the children. CH impacts on the lives of not just the sufferer but all those around him, and even though they won't mean to the kids are bound to resent missing out on the good things because of it. It would be a good time for them to re-charge too.

If you make sure all the housework is done (get the kids to help as part of your preperations for the trip) and put some pre- made meals in the freezer for him so he has everything  easily at hand and no chores to do. You never know he may appreciate the "me time".

When ever we have plans to visit family in different parts of the country, and CH strikes just in time to ruin it, I always insist my hubby goes on his own.I prefer to be left alone during an attack anyway and this way he and the grandkids don't miss out, and between attacks I enjoy the solitude.

Alternatively, can you take the O2 with you. It may be equally beneficial to him to have some family time in the peace of the country side with no work (turn off that cell phone) and no stress. I have had 2 long foreign trips where I was plagued with CH. I couldn't take O2 on the plane but had dozens of sumatriptan injections with me. I dealt with each attack when and where it happened and didn't let it spoil anything.

I guess it has to be your husbands choice. But either way I think you and the kids should go. Which ever way it goes I hope you have a great time. Come back and tell us all about it.
Maz.

Thanks Maz. I have mixed feelings about going camping without him, but it might be best. I'll see how he feels about it.

I don't think O2 camping would be safe, would it? I wouldn't have control over flame sources in a crowded family campground with campfires, camp stoves, kids running around with burning marshmallows, etc. I guess if we left the tanks in the car? My husband wouldn't have any privacy if he was using O2 in the car though. Hmm.

Fire danger from O2 is misunderstood. It won't catch fire by itself, but will accelerate a fire that is already burning, if the O2 is concentrated enough. If hubby is using O2 sitting 2 feet from a camp fire in open air, nothing is going to happen. Or if hubby is using O2 while smoking weed in a car with the windows rolled up, and catches his shirt on fire, well that wouldn't be a good thing.

Could you leave it in the car and just bring it out if he needs it? I wouldn't leave the car in the burning sun though, or it may get too hot.

I should think if you only used it in the confines of your tent and kept it well away from any fires and stoves it would be fine. After all there is not much of it that will escape into the air as he will be breathing most of it. I nursed my mum for a while before she died and she had an oxygen machine in her bedroom. It was a very tiny flat with all rooms leading off a centrall hall, which was only about 4 ft. square. The bedroom door was right opposite the kitchen door and I had to leave all the doors open so I could hear and see her. I cooked in the kitchen on an open flame every day.I smoked too, although I did stand by an open window for that.  Obviously I wouldn't have done it in her room any where near the machine but I was fine across the hallway.

I assume all the fires and stoves will be outside the tent in the open air, and if you keep the kids out while he's using it,then he'll have the privacy he needs. And at night he could probably use it in the car as there would be no one around to see. You can stand guard for him.

I do hope he goes with you. I'm sure with care and a little careful planning you can figure out something workable.Even though the CH will take some of the pleasure out of it, I still think it would do him a world of good to be away from the office for a while and spend leisure time with his family. As i know from my trips away, you can still have a really good time. You mustn't let it completely take over your life.

Hi Maz,
Sorry to read you've been getting attacks during the night
again, I know we've spoken a lot about this here, but trying
to wake up my grey mater, and was wondering if you are
taking Melatonin before bed 5-15mg to stop those night
attacks ?

Hoppy.

Hi Hoppy
Yes I'm really getting hammered at the moment, day and night. I have not had melatonin this time around, but I did use it for my last episode and it didn't help at all. I was taking 12mg (4x3mg). So this time I didn't bother with it.

The O2 is great for kip6 or less,which have been going on for a couple of weeks now.But it's not helping the big ones at night. Maybe they have got too firm a hold by the time I wake up.

I was having 2 or 3 hits during the day, but through the night it was on the hour, every hour. I started taking a sumatriptan tablet at bed time as per your previous suggestion and that seems to have helped, and I am settling into a pattern now, of only 2 per night. I take a suma and a sleeping pill and go to bed appx 11pm. Get woken between 12.30 and 1.30 with a k5 or 6 which I take care of with O2. Then at 4.30 I'm woken again with a monster and the O2 won't touch it so I use an injection. At least having it this way I do manage 2 or 3 hours sleep where as with the all night k6s I wasn't getting more than a half hour doze.

I'm sleeping in the spare room at the moment so I don't disturb Len. I have my tanks and my "home pharmacy" close at hand and when it happens I just think " Oh, here we go again" and I get up, deal with it and go back to sleep. So I'm learning to live with it, and I keep reminding myself that it will stop eventually.
Maz.

Oh Maz, that sounds really rough. I hope your CH taper off soon!


maz wrote on Aug 4^th, 2014 at 2:59am:

The O2 is great for kip6 or less,which have been going on for a couple of weeks now.But it's not helping the big ones at night. Maybe they have got too firm a hold by the time I wake up.

Yes, dh has also been finding that he is getting woken up by full-blown attacks that are hard to abort because they've advanced too far.

Have you tried this O2 breathing technique recommended by Batch?
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Dh did find that his breathing technique affects how well the O2 aborts, though he hasn't fully tried the technique above.

Regarding camping with oxygen. There are a few issues. I've read in numerous places that you shouldn't leave a tank in a hot car - obviously we would expect the car to become very hot in a camping situation in the summer. Leaving tanks in a tent seems like a bad idea too. We wouldn't always be there - we'd be at the beach a lot for example. We would not be able to ensure that the tanks would be secure with kids and flame sources everywhere. A tank will not catch fire by itself, but there have been cases of tanks leaking. I don't know...I'm sure it's do-able but there's some problem solving to do IMO.

So, for the first time in weeks, dh had a pain-free day yesterday!  :)

He was only woken by a small shadow quickly aborted. He did a few things differently last night. He didn't relax in an easy chair or bed until 3 AM - he worked on his computer in his office the whole time. He also had two rum and cokes in the wee hours (the caffeine?) - he normally drinks beer. It's a long weekend here.

So was it the caffeine (Coke)? Not relaxing? The regimen finally kicking in on day 14?

He's not happy/excited - doesn't want to get his hopes up... :-/

Hi Maz,
About the Melatonin, I also didn't get much success with
Melatonin, after trying a few different brands, then after reading Joe's post that this worked the best N-ACETYL-5-
so I thought nothing ventured nothing gained, although
not for stopping night attacks as I didn't get them, but
just for sleep. I now use eurovital 5mg which I get online
from Biovea, I take 5mg before bed and sleep like a baby
For CHs 5-15mg seems to work best, but you can take up
to 22mg before bed to help stop those night attacks.

Best Hoppy.

10:50 PM. Stopped movie. It's back :( .

OK, more optimistic this morning  :) .

For the past two nights, dh has only had one CH per night - each time it started weakly and was easily aborted with O2. Last night it started during our movie but he aborted it and he was back to watching within 10 minutes.

Something is happening. Either the cycle is winding down, or the regime is starting to work - yesterday was day 15. I am hoping it's the regime because of what this would mean for dh's future.

Me too. :D

Three mild ones in the early hours of this morning, Used O2 but no injections needed, and PF since 6.30 am. It's 9.15 pm now.

What ever is going on for your hubby fiesty, I hope it continues. You may get that camping trip together after all.

Maz...that is great!  [smiley=applause.gif]

Dh can't go on the camping trip even if he recovers from CH. Too much pressure at his job :( . I think we may go anyway. I'm not too excited about it though - it doesn't really feel like a holiday going camping as the sole adult...so much work  :-/ .

Dh got hammered badly with an attack in his sleep last night. Sounded like he was having a lot of trouble aborting with the O2.

I haven't been on in awhile but I hope you have read the thread about the success of using D3. My DH hasn't had a CH in over 4 years, since starting the D3 regimen.

QnHeartMM, thanks for the advice. That is fantastic that D3 has been working for your husband!

Dh has been on the D3 regimen for 16 days but so far it's not working. There were a couple of easier nights recently, but last night's middle of the night attack was a doozie.

Dh is on Day 17 of regimen. There may be some reason for slight optimism. For weeks, it was 2-3 attacks per night. The past four nights there has only been one attack per night - mild if dh is awake and can abort with O2 quickly, bad if it ramps up while dh is sleeping then he wakes in raging pain.

Dh is on Day 45 of cycle. In the previous 5 years, the cycle happened in October and lasted 3-4 weeks so this cycle is atypical for dh.

Cycle has been going on since Jun 24 now. It's now been 10 days that dh has "only" gotten one attack per day, except 3 nights ago he had a pain-free day/night. Still wondering if the D3 is starting to work (end of 4 week period is in 4 days) or if this stupid cycle is starting to wind down. When dh had his pain-free day he was SO happy, but it was short-lived.

I did go camping for 3 days with the kids, without dh. It was worthwhile, and fun. But a bummer leaving him behind. He was a good sport about it.

So glad you had fun camping with the kids. In a way you all suffer from your husbands CH and I'm sure the break did you good. ( Got any pics ?) It's important to look after yourself too.
Hope he was OK while you were gone.
Maz.

Didn't take too many pics - too busy supervising kids and doing camp chores ;) . It was a nice change of scene for me though.

Dh was fine without me. Probably better actually ;)

On Batch's advice, dh took an extra loading dose of 50,000 IU last night. He continues to have one milder headache per night - usually waking him up but sometimes hitting before bed. I think he is feeling a bit better than when he was getting the more powerful 2-3 attacks per night. But what really shows the toll was the night when he didn't get an attack at all (5 nights ago). He said he woke up and felt well rested and SO GOOD that he couldn't believe it.

I'm very curious to see what his D3 test will show - he'll take it in two days then we have to wait for the results.

No CH last night for dh!

Too early to do my happy dance but I am hoping the episode is over!

I'm wondering if the D3 regime is working here, or cycle finishing. We'll continue with the regime either way - for health reasons.

Dh has been pain free for the past two nights :)

I posted this in another thread:


feisty wrote on Aug 17^th, 2014 at 3:34pm:

Well, here's an update of my dh's results so far. His cycle started June 24, approx 8 weeks ago. He's never had a cycle in the summer (usually October), that has lasted this long (usually 3-4 weeks), or been this bad (2-3 attacks per night much of the cycle, some very long attacks). Dh started Batch's Anti-Inflammatory Regimen 28 days ago (except it has been lacking boron, which was not available locally or included in the multi I purchased. dh was taking honey as a source of boron but he will start a boron supplement as soon at it arrives). Based on Batch's advice, dh did an accelerated loading schedule in the first two weeks. He has taken a total of 580,000 IU of D3 within the 28 days. When he started the Regimen, dh was getting 2-3 attacks per night and they were pretty brutal. After 14 days of the Regimen, dh's attacks dropped down to one per night. On day 21, he had a single pain-free night. Then within the last week, the attacks have been one per night, and milder, with pain-free nights on days 26 & 27 (last two nights :) ). At this point, it's possible that dh's cycle is ending naturally, but the pattern of CH intensity seems to correspond with the pattern of D3 loading. It's day 28 so dh did the 25(OH)D blood test that we will mail into GrassrootsHealth. When we receive the results we will fill in Batch's survey. I am really hoping that it's the Regimen that is contributing to the pain reduction so that we have a long-term prevention solution. Thank you Batch for the work that you have done on this. There are so many reasons to take the Anti-Inflammatory Regimen other than CH, so I and my children (modified) are taking it as well.

I really think the D3 is working - it's been 3 painfree nights in a row!

That's good to hear, fingers x it stays that way.
It didn't work for me during my Spring 2012
cycle, but I persisted, and stayed on the regime,
and haven't had another episode since.

Hoppy.

That's so fantastic Hoppy. This forum has helped so many to manage CH and become pain free  [smiley=applause.gif]

Sigh. Don't count your chickens...dh was on the O2 in the middle of the night last night.

Well, a pain-free night for dh last night...which is GREAT because he was staying at a hotel with no O2. Four of the past 5 nights have been pain free. I really think it's the Regimen. Really curious to see dh's D3 levels - because I think we tested right at his threshold for becoming pain free. It would be cool to get a really good maintenance dose.

another mild CH last night.

feisty wrote on Aug 21^st, 2014 at 11:28pm:

another mild CH last night.

Pain free nights and single mild CHs are a big step forward from a few weeks back. Hope it keeps improving with more of the pain free nights.

Yes, HUGE progress Mike :) .

Pain free nights the last two nights. I gave dh an extra loading dose of 50K D3 last night in case he just needs a dose upwards to nudge him out of CH zone.

feisty wrote on Aug 25^th, 2014 at 3:05pm:

Doing my happy dance because something is working.  [smiley=smug.gif] Weeks 1 & 2 during accelerating loading doses: 2-3 attacks per night Week 3: 1 attack per night Week 4: 3 pain-free nights Week 5: 5 pain-free nights My husband is starting to become himself again. Thank you Batch.

My husband has been pain free for over two weeks now :) . But, I posted about a concerning symptom in the 123 thread:


feisty wrote on Sep 3^rd, 2014 at 4:25pm:

OK, I could use some help with figuring out whether the Anti-Inflammatory Regimen may be causing a symptom for my husband. Yesterday, he said that he had woken at 3 AM with heart palpitations (unpleasant awareness of his heart pounding) for the previous three nights. A couple of years ago he did have a doctor notice a heart sound with a stethoscope which makes me wonder if he has Mitral Valve Prolapse, but that has not been diagnosed, and he has not regularly had heart palpitations. He started the Regimen July 21, and had his last headache Aug 20. He is not taking any medications and he can't think of any other thing that has changed recently. I found these anecdotes: CrankieFrankie discontinued the Regimen after getting anxiety and heart palpitations: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Articles about heart palpitations being triggered by D3 supplementation with inadequate magnesium: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Could lack of magnesium combined with high Vitamin D3 be causing night-time waking with palpitations? I see that my husband's magnesium dose is a little low (375 mg) compared to Batch's recommendation (400-500 mg). My husband is taking: Centrum Men 50+ | START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (includes 125 mg magnesium) Jamieson Magnesium 250 mg Nature's Bounty, Ultra Strength D3-10,000 IU Jamieson B Complex 50 mg Life Extension, Super K with Advanced K2 Jamieson Vitamin A 10,000 IU Nature's Bounty Omega-3 Fish Oil 1000 mg Now Foods, Boron 3 mg Jamieson Probiotic 10 Billion Jamieson Exxtra-C 500 mg Any help with this would be appreciated.

from the 1,2,3 thread:

feisty wrote on Sep 8^th, 2014 at 9:31pm:

Batch wrote on Sep 6th, 2014 at 4:01pm: I'm a little uncomfortable with the continued heart pounding after upping the magnesium dose to 500 mg/day... Yeah, we are too. The pounding was ongoing yesterday. We decided to discontinue the Regimen as of today to see if that stops the heart symptoms. If the pounding continues we will know that it's not related to the Regimen at least. I will continue to push for a visit to the doctor's office but he continues to claim that he can't get away from work. In other frustrating news, I found out that the Vit D test results that took 3 long weeks seems to have been botched or something?? We did the blood spots correctly. I got this reply: Quote: Thank you for your recent blood spot card submission.  As part of a quality check process at [Purity Laboratory], your test was chosen to duplicate.  Unfortunately, there was not enough blood on the test to complete the process.  They have asked that you re-submit a new blood spot test card for this quality check. [then later] Thank you for your call today.  I spoke with the lab, and unfortunately, at this point, I cannot give you your husband's results.  I also spoke with our director who looked into the matter as well and could not get any additional information for me to pass on.  My deepest apologies for this extreme inconvenience.  I wish there was something we could do for you right now; there is a slight chance they will be able to release the results after additional testing for that batch, but I will not know more about this until later this week. That seems really odd to me. It makes me wonder if his test result was unusual and they wanted to confirm? I really wanted to know THAT level because that was very close to when he became pain free. Also, if we discontinue his levels may drop and then we will lose that reference point :( . I've asked for my money back as I don't have much confidence in their procedures if they are going to botch such a simple thing and take so long to do it. I don't know if I should fill out the Survey without the test results? I'll keep you posted about the palpitations and whether they turn out to be related to the Regimen or not.

also from the 1,2,3 thread:


feisty wrote on Sep 19^th, 2014 at 3:53pm:

A little update about the heart pounding sensation symptom that my husband experienced: feisty wrote on Sep 8th, 2014 at 9:31pm: The pounding was ongoing yesterday. We decided to discontinue the Regimen as of today to see if that stops the heart symptoms. If the pounding continues we will know that it's not related to the Regimen at least. Eleven days later, we have concluded that the heart pounding sensations were related to the Regimen. He had been getting multiple episodes for 30+ minutes at a time. Immediately after discontinuing the Regimen, the episodes reduced a lot in frequency and duration - usually just none or once per day, usually just for a few minutes. They still continue and they still are bothering him, but it's far less than before. I wish he would see a doctor but he insists that he can't due to ongoing work crises. He is interested in re-starting the Regimen in components, but we're thinking that we should wait until the pounding stops completely (assuming it will). Interesting anecdotes about discontinuing the Regimen - husband quickly got a cold, and he has not been sleeping as well as he was while taking the Regimen.

So frustrating. We don't know what his D3 levels was or are (due to the lab screwup), we don't know if the Regimen worked (because it might have been the episode ending naturally), we don't know why the Regimen caused the heart pounding sensations, and we don't know whether the Regimen can be tweaked to prevent this. The pounding really bothers my husband - it wakes him up and stresses him out.

Trust me.. Tell the stubborn fool to crank up the O2 and hyperventilate! (Mama has spoken!). It works better and quicker that way.

And pick up some Melatonin at the drug store or grocery store. Take about 10-20 mg before bedtime. It helps get thru the REM (Rapid Eye Movement) where the CH hits after about 90 minutes of going to sleep. Sometimes it takes a while to get in your system so keep taking it.. It's OTC and doesn't have any side effects.. But it will help him get the rest he needs to fight the other hits.

And about the Red Bull.. it's loaded with caffeine and taurine which seems to help stop the CH (if you chug it at the first sign of the CH). Coffee helps some also.

We've all been where he is and are trying to help him. If you can get him on this site and let him hear our "war" stories. Sometimes just knowing he's not the only one helps.

I've been hit on airplanes and in airports and about everywhere you can think of.

And I'm with everyone on the Imitrex. It's a med used for migraines (and works well on CH) and I can't for the life of me understand why your GP is hesitant to give you the injections. You might ask about cafergot (another med used for migraines and CH). It's a vaso-constrictor (comes in pill form). Bad part about it is that it makes you nauseated (or does me). I take Phenergan with it (Dramamine will work also).

Cafergot takes longer to work, but seems to me it lasts longer than Imitrex.

Keep him on the D3 (and the supplements). It's working for so many of us.

Keep us up to date and bring the big lug to this site and let me put my 5 1/2 shoe in his rear..  :) And bless you for helping him.  :-*

Thanks BarbaraD. Fortunately husband is between cycles right now. Unfortunately, as soon as his cycle stopped, he started having atrial fibrillation. It was diagnosed a few nights ago in the ER. We are worried :( .

I have to say, I am having a tough time being a supporter. I worry (too much?) about my husband and I am having trouble keeping on track with my own freelance work and homeschooling the kids. My life is complex at the best of time and it sucks dealing with the consequences of having let things slide due to the focus on husband's health over the past four months.