Jump to content

Need help - Old tricks not working anymore


iPain
 Share

Recommended Posts

  • Replies 55
  • Created
  • Last Reply

Top Posters In This Topic

I've done it with some success.  Really hot or really cold shower has given me some success in the past as well.  But those are only good for mid-day mid-level CH.  I can't see myself being able to stay put enough to give any of those a shot when I'm awakened at 2 a.m. with a kip 8-10.  Right now, best option is a much larger red bull than normal and oxygen.  Detox begins now.  Wish me luck all. 

Link to comment
Share on other sites

Best of luck iPain. You're way overdue for some luck of the good variety.  :o

And I know whatcha mean about finding the heat/cold to be more useful for the attacks that aren't at such an astronomic/nuclear level, although that's limited to my experience with attempts to abort an attack - I guess I haven't really pursued the heat/cold just with the hopes of lessening the severity of a hit that's not going to be aborted.

Link to comment
Share on other sites

Before I found my vibrator and the relief that has brought me, I was always running in extreme pain to the shower. There I would stand as close to the shower head, with it hitting the back of my head at full temperature. That was my every night for about 4 years. When I started dating my now wife, I would stay the night with her since she lived out of town and her roommate would always ask why I would take long showers at 2am every night. haha the luxuries of being a cluster head. It never aborted a headache, but chugging a monster while standing under the shower head always seemed to make it a little more bearable.

Link to comment
Share on other sites

Night 2 of detox was my worst ever in terms of number, but severity has been somewhat tempered.  Nothing above a kip 7, but I am having constant shadows and kip 4-7s lasting 20-90 minutes.  I haven't had more than maybe 4 hours go by since yesterday at 2 a.m. without a kip 4-7.  Last night, I was awakened at 12, kip 7, two red bulls and oxygen, couldn't fall asleep until 3, woke up again at 4, kip 6-7, tried oxygen only and it worked, back asleep around 5-5:30, up again at 6:30 kip 5-6, oxygen only, back asleep at 7:30, up again at 8:30 kip 5-6, oxygen and one red bull.  Holding out ok so far since, but shadows remain.

Oddly, my left eye will not recover.  Usually within 30 minutes to an hour, it looks normal.  It has been somewhat swollen, red, and tearing for at least a week now.  Plus, I'm constantly sniffing and blowing my nose because my left nostril is constantly running.  Everyone at work just thinks I'm sick.  I just keep my door closed all day and am averaging 4-8 red bulls a day.

I don't expect any responses, and I'm sorry to clog the board.  But, like I said, what I'm mostly feeling is a loss of control due things just not working as well as they used to (or at all), and somehow writing about it makes me feel better. 

Praying I'm one of the few for whom HBWR works when RC didn't.  Tuesday early evening will be bust night.....Monday evening if I lose my will, but NOT before. 

Link to comment
Share on other sites

tried oxygen only and it worked, back asleep around 5-5:30, up again at 6:30 kip 5-6, oxygen only, back asleep at 7:30, up again at 8:30

Ugh, yeah been there in high cycle where the O2 aborts for wake up hits tend to hold for exactly one hour.  :(

Here's hoping that AT LEAST the severity remains somewhat tempered, and that it could even be an indicator that the entire cycle is beginning to wane and is on the way out.

Link to comment
Share on other sites

I have been reading your thread and see you have had great advice. I did notice that you said your taking the D3 regimen...When did you start and on what dosage are you on?? If you are taking the calcium supplement then drop it now and do a daily loading dose of 50,000 iu for a week then get your 25 ohd lab test done to see where your level is as you want to be between 60 and 110 ng/ml to be in the pain free zone. Doing this dosage for a week will not hurt you in fact it should help you to be pain free quicker. I'm guessing that you started the regimen when your cycle started and dosing at 10,000iu daily may take longer than your cycle to end that's why i suggest the higher doses of D3 to get you in that pf zone quickly. I work with Batch on helping folks dose and tweak the regimen to work for you so I have alot of experience helping folks with the regimen. As you know it does not work for everyone but it won't work at all if your levels are to low....Best of luck and let me know what you have done so far with the regimen...John

Link to comment
Share on other sites

Clusterman, thank you so much for the advice.  I've been on the vitamin d regimen for a little over a year.  I've just been doing it daily, same goes for the fish oil and magnesium.  I figure it can't hurt and might help, but honestly, I can't say the regimen has definitely helped me.  I actually realized I haven't been taking the calcium anyway, so no need to drop it. You are correct that I am taking 10,000 IU daily.  50,000 honestly sounds a little scary to me, but given I'm currently wired after a double red bull/oxygen and still near hour long kip 7-8, I'd try just about anything.  My last d3 blood test, which I had done in March had me at only 45.1, so I have some room to move. 

Also, I'm sure this is far from novel, but my wife brought me an ice pack to hold on my face during this latest episode.  It cut the pain almost in half.  Given my current desperation, it's always interesting to find relief in something so simple.

Link to comment
Share on other sites

Hooray for the ice!

You are correct that I am taking 10,000 IU daily.50,000 honestly sounds a little scary to me

Like C'man59, I feel very confident that 50,000IU per day for a week won't harm you, especially since your D3 is so low. (I'm hedging that a little because, after all, I'm not a doctor.)  Some people get side effects they don't like from D3 (and some people here have said the D3 regimen made their attacks worse), but I don't think there's a general medical danger of going up to 50K IU/day for a week.     But it's probably important to do the whole thing except for the calcium, which would include the daily lemonade/limeade, too (I think -- maybe C'man59 will set me straight about that).

Link to comment
Share on other sites

Looks like I fell out of the loop on the exact D3 regimen during my time away from the board.  I am not sure what you mean by the daily lemonade/limeade thing.  Would someone mind sending me to a post giving the exact regimen?  I did a search and see plenty of discussion, but I don't see the exact regimen listed.  I've just been taking D3, fish oil, and magnesium nightly. 

Will do the 50,000 today.

Meaning no disrespect to my chronic brothers and sisters whose lives I can't possibly understand, but at what point do I start worrying that my episodics have turned chronic?

My history is episodic once or twice a year for 1-3 weeks from the time I was 17 until I was 28 (misdiagnosed as migraines).  At 28 had my first kip 10 during a 3 month cycle during which I almost lost hope for my life, and then I  found this board.  I'm now 30 and my episodes are occurring several times a year lasting up to 2 months.  Now I've been in "cycle" for about 4 weeks.  3 busts have had no effect.  Oxygen has lost its miracle effect and only sometimes helps.  Same with red bull.  I know it has been only 4 weeks and chronics would call that nothing, but the fact that nothing seems to be working right has me worried that my condition is taking a turn for the worse.

Link to comment
Share on other sites

Looks like I fell out of the loop on the exact D3 regimen during my time away from the board.I am not sure what you mean by the daily lemonade/limeade thing.Would someone mind sending me to a post giving the exact regimen?I did a search and see plenty of discussion, but I don't see the exact regimen listed.I've just been taking D3, fish oil, and magnesium nightly.
This post from a while back gives the regimen as it was prescribed in 2011. I haven't checked recently for updates, but I'd love it if John (C'man59) or anyone else would let us know if this file needs to be brought up to date.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804
Link to comment
Share on other sites

Thank you CHfather.  I think I'm going to move to 50,000 IU and stay with the same fish oil and magnesium only for now and see where it goes.

Right now, I don't know how I would be maintaining my detox without the ice pack.  Wow, what a difference-maker for me.  I know everyone has their thing, and I finally found mine.  I love my ice pack.  I highly recommend trying it to anyone out there suffering.  The pressure of pressing it against your face along with the cold really seems to help me.

Link to comment
Share on other sites

Hey ipain...

If you have been on the regimen for a year or more and your last test was only a 45 ng/ml your levels are to low but you need to get a 25 ohd lab test to see where your level is? As we can't do this properly until we know what your D3 level is so please schedule a test asap and you shouldn't need to go the 50,000iu for a week I would just do it for two or three days and that should help you and then just do a 50,000iu loading dose weekly and up your dose to 15,000iu daily (as instructed by Batch) so hang in there...:)

I will post the D3 regimen and yes you need to do the lemonade with the regimen and just follow the regimen exactly and be sure to do the cofactors of 400 mg of Magnesium, Zinc and vitamin K2 as that usually helps greatly....Best of luck to all and please feel free to message me if you have concerns...Johnny...:)

Link to comment
Share on other sites

Here is the D3 regimen...Please read very carefully and it's best to have your doc on board and if he or she has concerns just direct them to Batch's thread. Some folks have medical problems that effect taking the regimen adversely so thats the reason to have your doc involved. BE SAFE...:)

I am not a doctor so I just try my best to help with the regimen and if I can't answer your questions then I will direct you to Pete Batch who is the man who created the regimen and all you have to do is click on his name (Batch) and then click on "send a personal message to Batch" and he would be happy to help anyone with the regimen...Good luck to all and be patient as it can take as long as 8 weeks for the regimen to work effectively and be sure to get your 25 ohd lab tests to keep you safe and in the pain free zone of 60 to 110 ng/ml range it's VERY IMPORTANT and take the survey after 30 days pain free or not....Johnny...:)

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404

Link to comment
Share on other sites

HBWR arrived today.  It's day 4 of detox.  I'm dealing with some fairly intense shadows at the moment, but I made it into the office.

Do I wait one more day?  How hard and fast is this 5 day rule?  I'm really anxious to bust this cycle, and I'm praying it's bustable. 

Link to comment
Share on other sites

How hard and fast is this 5 day rule?

I wish I could tell you I've seen a definitive answer to that question, but unfortunately some feel strongly that 5 is a hard and fast rule, while others believe just as strongly that 4 or even 3 days can suffice.

So this is one topic where I don't have any feeling that there's a real consensus among CBusting folk, and it could probably even be deemed controversial.   :-/

Link to comment
Share on other sites

I with Jeebs, although I probably fall more into the second camp.  If the hits are bad enough or causing problems at work, you may want to go ahead and dose tonight iPain. 

On another note, I noticed this post made today on the thread,  "Lemon Tek for Busting":

quote:

[highlight]Well this is interesting! I added lemon juice to my HBW concoction (5 seeds) and had a very long 12 hour trip!

I only added the lemon for the taste, and wondered why it was so strong! Ha! Knocked my CH into remission for another year so I can't complain! Hope all goes well for you all xxx[/highlight]

Link to comment
Share on other sites

Interesting.  There's no question the hits are bad enough and are causing problems at work.  It's time.  But I used peppermint tea, not lemon juice.  Didn't see your post in time.  It's sitting in the refrigerator now.  Also, since I've never had anything that in any way even remotely resembling a trip, the thought of a 12 hour long one kinda scares the crap out of me.  Wouldn't mind an escape from this current life though I'll tell you that much.  This is no way to live. 

Link to comment
Share on other sites

It better have worked because that was surprisingly awful.  Thirty minutes of nothing, one hour of slightly drunk feeling, then couldn't keep my eyes open and fell asleep.  Weird dreams, up every couple hours.  Several CH in the middle of the night of mild-moderate intensity, but I felt almost paralyzed and could not get up to go to my oxygen.  Very late to work as a result.  Regular headache and feeling very weak at the moment.  If it worked, I'll throw away a day anytime.  But, if it didn't, that was pretty uncomfortable.  No CH since around 4 a.m., but that's pretty typical for me.  They don't start up until the afternoon, and the biggies usuallly don't occur until late night/early morning.

Link to comment
Share on other sites

Thanks guys.  Used only three per alleyoop's recommendation.

Dull headache and overall weakness remains.  Just had my first cluster pain of the day.  Relatively mild though.  One red bull and it disappeared pretty quickly.  Mild shadows now.  The real test will be what happens tonight and early tomorrow morning. 

Link to comment
Share on other sites

Improvement!.....hopefully.  Got up twice during the night with kip 6-7....basically just enough to wake me up.  Oxygen-only for 10 minutes each time and got back to sleep.  Some shadows this morning.  But, I definitely feel better today than I have in more than a month now. 

I don't know if it's the HBWR or if my cycle is winding down or if this is false hope and just an easier night of the cycle, but I'll take kip 6-7s over 8-10s any day of the week.

As a sharing my experience kind of thing, that regular dull headache I had and general weakness following HBWR lasted a full 24 hours.  Not too fun.  But if I worked, I'd do it anytime!

Link to comment
Share on other sites

I don't know if it's the HBWR or if my cycle is winding down or if this is false hope and just an easier night of the cycle, but I'll take kip 6-7s over 8-10s any day of the week.

Hopefully, it is your cycle winding down, but the change up does sound like the busting is shaking things up -- good sign! 

Depending on how things go, I would plan on busting again this weekend.

bobb

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
 Share


×
×
  • Create New...