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Pos1964

This is hell!

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Another update,

I didn't have the time yet to contact Batch, it was a bit hectic here at home. I don't know if the Vitamin D kicked in real hard but I do know that, since he took it, it got worse!

Jan busted again last night, he had 2 minor hits since during the night. He's still sleeping now. Hope this time the shrooms will do their job better then the previous one.

Coming Tuesday he has an appointment with his neurologist, we kept track of the hits since Nov. 27th and he's planning to show here the number of hits he had since then. I'm guessing she will prescribe another type of medication again. not expecting much of it anyway!

The pain in his neck (exactly where he got the injection) is increasing, so he wants to let that checked for sure.

The good news, it's already 13 hours since the bust and except for the 2 minor hits he hasn't had any major hits and is still asleep right now.

I hope the slap backs will stay away or at least be mild.

I've uploaded 2 screenshots of the "cluster-diary" I've kept, if your interested.

Hoping for positive results again!  :)

Elly

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Hi all,

It's been a couple of days since the last update but it is a very busy time at work these days.

While I was still figuring out how to put my questions in writing to pm Batch, he had already contacted me :), such a nice, patient and helpful man!

I still have email contact with him and he explained a lot about the Vitamin D regimen. He also send me a paper on how to use the oxygen properly and the different ways Jan can use it.

As for Jan, well it's not getting any better at the moment. He had his last bust last Saturday, didn't had any slap backs but the hits are still frequent, still up to 6-8 a day.

The positive thing is that he didn't use any medication during the last 3 weeks now. So, he gets hit 6-8 times a day without any medication ( except for the oxygen) while, before it got real bad with up to 13 hits a day, he got the same amount of hits with medication!

He's really exhausted now and when he saw his neurologist yesterday he decided to take the Deseril again (we had discussed this before, knowing the neurologist would suggest that) until things have calmed down. We believe that he is both chronic as episodic and he is in his episodic cycle now. Once he's back to his chronic cycle, he will sure do the shrooms again, they have proven to us that they work, for the first time in many, many years, he had his 30 hours of PF time while busting.

Maybe we started busting to soon for him, I've read here on the forum that for chronic CH'ers, it's harder to get the results we were hoping for.

Meantime, he will do the D3 regimen along with the oxygen and Deseril and will start busting again once this cycle is over!

PF wishes to all of you

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Well, already a week ago since I posted, Jan is doing better now, however it's on Verapamil, Deseril and oxygen. . Occasionally he's using Imigran but very rarely these days. He is also doing the D3 Regimen, that won't hurt anyway. He has gained some weight, looks better, is more active and the hits are now reduced to approximately 5 a day, less severe and lower in frequency. He has PF periods of 14 hours and up, so we're very pleased with that!  :)

Although it's nice he's feeling better, we know it's just temporary, one day he will get used to all medication again and they won't be sufficient anymore. He definitely will bust again when he reaches that point. We still believe this method is helping, as I said before, he has had 30 hours of PF time on shrooms without any other medication at all!

For now, we're glad there's some "normal" living again, especially now the Holidays are near. We will enjoy that period and start the new year with high hopes. One day he will be on maintenance dosing too, like many others on this sight!

Wishing you all a Merry Christmas and thank you all for being so supportive the last couple of weeks. I will keep visiting this forum and definitely will be back. This site helped and still is helping CH sufferers and their loved ones, keeping their sanity!

Thank you all!

Elly

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Good Morning, afternoon,evening!

Wishing you all a very Merry Christmas, hope Santa will give everybody two PAINFREE days!!!(I really hope forever but we have to start somewhere)

By the way, Jan is getting better every day, he only gets hit at night once or twice and occasionally one at daytime, so the hits are reduced now to 3-4 on a daily base  :)

Sure, he's taken Verapamil and Deseril but hardly any Imigran.

I think very soon next year he will be recovered enough to bust again  ;)

Enjoy the Holidays!!!!

Elly

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Great news for you both! Things seem so much better than a few weeks ago. I also am improving but not out of the woods.  I slept all night and woke pain free.  I was so happy getting ready to open presents and then I was visited by the "buzz killer". It was mild and knocked down with O2 quickly, but a clear reminder that things are still not normal. Tell Jan that he has a friend in the States who has faith that the new year will bring many more pain free times. You are his rock. Merry Christmas!   

    

                            Jackie

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Thanks Jackie, Birdman, Bejeebers

Jackie, great to read you could knockdown the beast, hope you had two fantastic Christmas days. Jan appreciates your kind words and we're both hoping you'll get a very long PF time :)

Birdman, Bejeebers

Thank you for all the support you always give, even just one small single sentence is helping so much!

Wishing every body on this board a Happy New Year!!!

May the force be with you  ;)

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Great, great news! Jan is, for the first time since many, many years, PF for more than 48 hours now, his last hit was on Dec. 31th at 3:25 am and was aborted with oxygen in less than 10 minutes! :D

I can't remember the last time he has been PF that long, as a chronic CH, he always had at least 4 hits a day!

I know he's on verapamil and Deseril but that had never stopped the hits entirely so I'm convinced the shrooms he took, along with the D3 regimen he's taking since a couple of weeks now,  have a very great positive impact. If this PF time remains we will be busting again sooner than we've planned. We're so exited! 2013 has started in a fantastic way!

Hope the new year has started positive for all CH's!

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Great, great news! Jan is, for the first time since many, many years, PF for more than 48 hours now, his last hit was on Dec. 31th at 3:25 am and was aborted with oxygen in less than 10 minutes! :D

I can't remember the last time he has been PF that long, as a chronic CH, he always had at least 4 hits a day!

I know he's on verapamil and Deseril but that had never stopped the hits entirely so I'm convinced the shrooms he took, along with the D3 regimen he's taking since a couple of weeks now,  have a very great positive impact. If this PF time remains we will be busting again sooner than we've planned. We're so exited! 2013 has started in a fantastic way!

I'm so happy for Jan and you!!! 

You know, ever since suffering from CH, this type of news maybe makes me the happiest out of any other news I could hear.  It almost, nope, it does(it's doing it now), brings tears to my eyes and sunshine to my soul. 8-)

Keep it up!!!  Happy New Year!!! ;D :D ;D

Runaway

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Hi,

I've been away for a bit, and must admit I haven't read this entire thread yet, but even from reading this page of it - WOW! Jan has it rough.

I thought 1-5 hits a day every 2-3 days was rough. My heart goes out to you two.

I had tried everything the doctors could think of before busting. It all either wore off as my body got used to it, or the reactions were so bad it was worse than the clusters. I tried Batch's Vitamin D regimen, which I found effective. BUT, I was on Topiramate at the time, and the combination turned my urine to fire. Haven't tried it since coming off Topiramate.

It has taken me a year of busting off-and-on, but I'm now getting up to 23 days Cluster Free at a time. So long I can almost, just about, forget I have clusters for a time.

Between D3 and Busting, I do believe the demon can be stopped. Just hang in there and keep trying everything.

Hope we all have a more PF 2013, especially Jan. xx Moxie

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Well it's been a while since my last post, Jan is doing great! He had 3 mild hits the last two weeks so that is really a big improvement.

We're now caching up the lost time we had during the cycle and have been very productive  :).

Thank you for all the positive comments and I want to say to Moxiegirl, I hope you will also get more PF time soon. 1-5 hits a day every 2-3 days IS rough! Our heats go out to you. I really, really hope it will get better very soon!

Meanwhile, we keep our fingers crossed and hope Jan continues to keep feeling better every day!  ;):D

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Hi all,

Back again with another update!

Last Thursday Jan and I went to his neurologist to get info about the upcoming ONS surgery. We received a lot of information, asked all the questions we had and got the answers to it.

It comes down to:

- from March 14th. Jan needs to keep an online diary, the first 6 weeks he needs to fill in once a week how many hits he had.

- the next 6 weeks he needs to do this on a daily base, whether he had a hit or not.

- approximately between half June/July he will get the surgery which takes 2 hours. If everything goes well and he's feeling well, he can go home the next day already.

- there will be no immediately effect, this can take up to 6 months. Depends on how soon they can set the correct frequency for him.

- after that 6 months, he will get a remote so he can adjust the frequency himself if needed. He needs to participate the study for a total of 15 months. During that study, he will be checked on a regular base.

We have gotten a lot of information and also been told that there's no guarantee it will work, a previous study showed that  one group has had a reduction of 95%, another group has had a reduction of 50-75% and the last group had no effect at all!

Let's just hope Jan will at least be in the middle Group, that would already be a huge improvement.

Meanwhile he's doing better, he had to stop all medication except for Verapamil. We notice the hits are coming more frequent again but with the surgery in mind, he can cope with it.

PF days to all of you, keep you posted!

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I am sorry your surviving this. I hate saying suffer.

Where or how did you get or make that headache diary?

I have a lousy one I use for my nuerosurgeon.

Any chance of emailing me a link or how to do one like you?

I am NOT computer savy....but I do love your chart,very well detailed. Easy read.

Hope you feel better.

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Been thinking about you guys and sending positive vibes your way.  I hope he gets the best results possible, we suffer enough that we can be a little greedy.  Please keep us posted on his progress and I will keep sending thoughts your way.

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@CHS,

I made the chart myself , I will PM it to you (if possible) asap.

@birdman,

Hi Birdy  :), thanks for your great support, sure we will keep you all posted.

How are you doing these days?

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