hi! so glad to hear she got a PF break! I hope they don't come back. if they do, like Mike says, don't let them keep giving her steroids - this is a once in a blue moon thing for when it gets really really really bad. to break a bad cycle. not a way to 'treat' the headaches, steroids cause a lot of other problems.

a naturopath would do a d3. and it is cool that you can get a test online now, i haven't ordered one that way before, but that sounds promising.

good luck!

Mjedwards409 wrote on Jul 22^nd, 2014 at 9:07pm:


It could just be a normal tension headache. Having one headache type doesn't preclude you from getting other types too, with CH and migraine being the more common combination.

The best we've figured out about shadows is that they are just low level CHs. Treating them like a CH, e.g. using oxygen, energy drinks, etc. seems to work quite well.

Yesterday was 40mg Pred instead of 60mg. Pf besides the tension headache. I know it's still early but fingers crossed. Today is 6 days pf.

Thanks for the info on shadows guys.  She describes these as completely standard tension headaches, like she as always had.  It might be coming from the Prednisone taper.

Quick update.  (Knocking A LOT on wood right now)  She is still pain free.  Yesterday she only took 20mg Pred.  Today she has been completely off all day.  I know it's still in her system a bid.  I am praying so hard that she reamins PF, as she has been so far.  I know the next couple of days will be crucial.

Thanks so much and please keep her in your thoughts.  Going for the "just in case" MRI tomorrow morning just to eliminate any other possibilities.

I hope everyone is doing well!

Glad your wife is currently PF

Quote:
Yes, my husband is getting shadows almost every day and the O2 helps. I can tell that he's getting one because he starts to rub the right side of his forehead - the asymmetry is a give-away.

Hoping the test results rule out more serious conditions.

Yes, the doctors will say it's the end of the cycle and not the D3 thats working. In fairness, it may well be that, as cycles can stop as suddenly as they start, or sometimes they just peter out slowly. I've had it both ways.

However, the D3 takes a while to build up to the correct levels in your system which is why the blood test is important - to check where you're at. So it's important to keep taking the D3 even after all sign of CH have gone. That way it will continue to build up in the system and hopefully the next cycle will be a non event.

I can't believe there are still doctors who won't diagnose CH in women. My own neuro is one of them. He KNOWS I have CH, but will not back down now. His official diagnosis is TAC. When I googled it, it's a group of 3 headache conditions of which CH is one. My symptoms don't fit the other 2. But it's not CH because I'm a woman. I told him there were hundreds of women on this site alone, and he denied they had it too. So every other doctor in the world who has diagnosed this in women, is wrong. You can't win !
So basically I have asked my GP for CH meds and she gave them to me, so when I see the neuro I just nod politely and then go home and do my own thing.

Is there any chance your wife can see a different doctor.
Maz.

Thanks maz and BL.  She had another hit at about 4:00AM this morning.  She took the Imitrex tab and declined the Red Bull.  Thing lasted about an hour.  Right as she dozed off, our alarms went off to wake up.  She described it as being a 9 on the pain scale, but since she is new to these I think it was more like a 6 or 7 in yall's world.  She didn't cry or flail, just kind of moaned and rocked.

I went and bought her all of the regimen yesterday.  Went with the Magnesium Citrate over the Magnesium Oxide due to some of the things I read.  Got the exact same brands of everything and threw in the B50 complex.  She took the standard 10,000iu dose to start off.  (Per Batch's recommendation to make sure there were no ill effects, which there were not)  She will take 70,000iu this evening with dinner along with everything else.

I have a few questions that I will also post of Batch's D3 thread:

- She starts a new job this week as a teacher so she absolutely cannot afford a hit at work that fails to be aborted.  Do you think it's wise to get a refill of the pred taper while she gets the D3 and all into her system?  Obviously this is not a long term solution, but her first taper was only 7 days which is fairly short, so maybe a second short cycle would give her some temp relief while she D3 loaded?

- Batch's original D3 regimen called for 400mg Magnesium.  However, since we bought the Magnesium Citrate it comes in 250mg tablets.  Would the single 250mg Magnesium Cit. be enough considering it absorbs much better than Oxide?  She already eats a lot of fruits, leafy greans, and mixed nuts.

- Since it looks like these neuros may stick to their guns on the "women can't get CH" thing, is it worth just getting an O2 tank through other means than medical?  If so, can I just get the tank and then by the non-rebreather mask from the site. Are there any other "parts" we'd need?

Thanks very much again for the support.

Hi Mjedwards,

Greetings from a fellow supporter. I haven't read your whole thread so my apologies if I have written something below that doesn't apply.

Maz is giving you good advice

Mjedwards409 wrote on Jul 28^th, 2014 at 7:32am:
That is a tricky situation. I can't advise you on the meds, but I can tell you that my husband - who has been having CH for about 4 years - has had the pattern of attacks in the evening and at night. Daytime attacks have been very very rare.

Mjedwards409 wrote on Jul 28^th, 2014 at 7:32am:
If she is taking a multi, check how much magnesium is in it. I would do the full 400.

Mjedwards409 wrote on Jul 28^th, 2014 at 7:32am:

Sometimes you have to educate your doctor. Print and highlight:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
Quote:

Emphasize the CH-specific symptoms that she has: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
Make sure they have ruled out other underlying causes - if they don't think it's CH, what are they saying it is? Other causes of pain like that can be even more serious .

Mjedwards409 wrote on Jul 28^th, 2014 at 7:32am:
I walked into our family doctor's office determined to get an O2 prescription and I was successful. It's important to speak in a language they understand. Your wife needs to present the problem: "I will lose my job if I can't get the pain under control. I can't sleep and I'm terrified of the attacks". And then present the solution: "could we at least do a trial period to see if the O2 helps?". The indirect message that you don't say is: "it's your fault if I lose my job due to lack of appropriate diagnosis/treatment". Speak for your wife if she can't advocate for herself this way.

Having seen how O2 helps my husband, with no side effects, I would get welder's O2 if I had to. Especially with the nighttime attacks, it gets him some sleep (but the attacks still exhaust him). If you're serious about doing this first read this whole page carefully:
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and here is how one person did the welding O2 thing:
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Good luck. I'm posting in a thread in the Supporter's Corner part of the forum - it can be helpful to take some time to make it "all about me". I know what you're going through - dh can barely cope right now and I've been desperately running around trying to organize things for him. We are constantly cancelling things and it's been hard on both of us.

Can you have her describe her pain and where exactly it is located.

For instance for me my cluster side is my right side. My pain starts with a burning in my nostril and then moves up to my temple as the pain increases. Is her pain excruciating, exquisite, worst pain she has ever experienced? Does she have a stuffy nose during the attack? These are all classic signs of CH.

From reading I agree O2 with a good non rebreather mask and regulator that goes at least up to 15lpm. Also verapamil. I would advise starting at 240-360mg of Verapamil and increase as necessary. Verapamil has been a huge preventative for me. I have tried it all and I still get CH breakthrough, but I have been on Verapamil for many years and side effects are minimal in my case.

Prednisone works. I use it for emergencies. I travel with it in case I get hit while away from 02. It sounds like her taper was very quick, I would go with a longer taper if possible.

We all do truly feel for her, but we know so much more now than we did 25 years ago when I got hit for the first time. But still at first it is damn scary.

Another alternative I don't think I saw mentioned was clusterbusting. Just google it.

--mike--

Thanks for the help everyone.  On a work conference call so I doon't have a lot of time to post details.  (Will later today)  Basically the doc called in a script for Topamax.  Researching the sides now.  I know it's normally a migraine med but I've read there have been some good results with CH as well.

She has a follow up appt with the new Neuro (same office, but lead HA specialist) in 8 days.  Started Batch's D3 regimen but too early to tell.  Will follow up this afternoon with full details.  Thanks!

Mjedwards409 wrote on Jul 29^th, 2014 at 7:41am:
From a CH study where they used Topimarate:
Quote:

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Here's an old thread talking about Topomax side effects in CH sufferers:
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I would not want to try a drug like this while starting a new teaching job 

Hopefully, her cycle is coming to it's natural end. If so, now is the time to get stocked up on all necessary things so you are ready for the next one. If she doesn't want the topomax maybe she could try a long term preventative like verapamil, and also get a few imitrex injections for if a sneaky one gets through, then she should be well armed.

All the meds I have ever tried (many that were not even the right ones for this condition) have had gruesome side effects for a very few people. Depression and suicidal feelings have only ever been brought about by the pain for me. Not the meds. Such side effects are really very rare.

Personally I don't use any preventative (except D3). I prefer to just use abortives when and if I need them (O2 at home and injections when I'm out) but it's easier for me as I no longer work.

Hope she's getting the break she needs. But don't get complacent. Always be prepared.
Maz.