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Oxygen working but getting rehit 1 hour later (Read 4375 times)
red ryder
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Oxygen working but getting rehit 1 hour later
Feb 15th, 2011 at 11:54am
 
The beast is back in full force. I have been on 240mg verap. for the last year after going for 8 months straight with low grade clusters. I would ramp up and down from 160-320mg  while they were very low grade (shadow like). They broke through full force last week and I have ramped the verap. up to 400 mg.

I am using the O2 at 25lpm when getting hit 90% at night. But after hitting the O2 and going back to sleep they will hit once I get into rem sleep mode. So I am up every 1 1/2-2 hrs. I started 3 mg melatonin last night. Any other advice on how to not get the rehits-besides not going back to sleep!!! Does it help to double does the verap. before bedtime. I am taking it now every 5 hrs by emediate release. Thanks for any advice!
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Re: Oxygen working but getting rehit 1 hour later
Reply #1 - Feb 15th, 2011 at 12:05pm
 
Can't help you on the verapamil, no experience there. Your dose of melatonin is very low. Some go up to 15 mg. Some have found success by combining the standard melatonin with the extended release melatonin, gets them thru the night without wake up hits.

I used to take an oral cafergot when I started the oxygen. 02 would beat it down, cafergot would buy me several more hours of pain free time. This last cycle I dumped the cafergot and instead drink a sugar free red bull with my 02. 02 knocks it down, red bull buys me a few more hours. 2 problems for you, the night hits, red bull isn't condusive to sleeping, and the taurine can interact badly with your verapamil causing heart issues.

Joe

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red ryder
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Re: Oxygen working but getting rehit 1 hour later
Reply #2 - Feb 15th, 2011 at 12:52pm
 
Thanks for the info Joe, I will try bumping up the melatonin over the next couple of days. Yes, I was worried about mixing the taurine with the verap. I might taper the verap down to nothing and try to start it again a week later since I have been on it non stop for 1 1/2 years. I was wondering if anyone out there doubled their verap dose at bedtime if this might help.Again thanks joe for the info.
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Re: Oxygen working but getting rehit 1 hour later
Reply #3 - Feb 16th, 2011 at 8:24am
 
The way I understand verpamil is it builds up in your system over time...10-14 days. The quick relase form might help if you doubled up on your daily dose some time before bed if that's when your cycle is the worst. I'd check this out with my dr, though. You still have some room to increase if everything else with you checks out fine. REM sleep was the worst for me, too. I take 15mgs melatonin 1 hr before bed and it seems to have worked wonders. I supplement with B6 also since melatonin needs that to work. Good luck and God bless. lance
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red ryder
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Re: Oxygen working but getting rehit 1 hour later
Reply #4 - Feb 16th, 2011 at 9:00am
 
Thanks Lance, I went up to 6mg melatonin last night and only had 2 hits, wow its amazing how good 4 hours of uninterupted sleep felt. I think I will keep uping the melatonin each night to see if this has a better effect. Thanks,  Jay
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Re: Oxygen working but getting rehit 1 hour later
Reply #5 - Feb 16th, 2011 at 9:53am
 
And just a reminder, Thomas was the first to bring it up on the melatonion dosing survey I did a while back. While 9-12 mg was kind of a comfortable medium dosing, many were up at 15 mg. Thomas said by combining slow release melatonin with standard release, he could get thru a whole night. Might be worth  a shot.

And yeah, 4 hours of uninterrupted sleep....pure heaven in high cycle! Smiley

Joe
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Re: Oxygen working but getting rehit 1 hour later
Reply #6 - Feb 16th, 2011 at 6:30pm
 
240mg. of Verapamil is low but not unheard of.  Most people I've talked to here said they finally got some relief at higher than that.  Some said 960mg.




   Protocol

"Patients with CH were started on 240 mg of verapamil daily.
The dosage was increased by 80 mg every 2 weeks and an EKG performed until the CH was suppressed, side effects intervened, or to a maximum daily dose of 960 mg.
EKGs were performed after 2 weeks to account for the time taken for the effect of verapamil dose changes to settle.
EKGs were performed either on the hospital site or by local practitioners if the distance from the clinic and travel were difficult.
One patient had 1,000 mg and one had 1,200 mg daily by their own decision."


At least you seem to have a good regulator with a high-flow.  After the hit goes away...stay on it for a while.
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Batch
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Re: Oxygen working but getting rehit 1 hour later
Reply #7 - Feb 17th, 2011 at 3:31am
 
Hey Red Ryder,

What you're experiencing although not uncommon, is a good sign on one hand and a possible indication of another problem or problems on the other.  I know that may sound strange so here goes my explanation. 

The good sign is you're able to abort your cluster headaches with oxygen therapy and it sounds like 25 liters/minute is helping you to do this reliably. That is great news all by itself!

My experience with CH and that of many other CH'ers indicate we experience high and low cycles where the frequency of our CH can vary from an average four to eight a week during a low cycle up to an average of six to eight a day during high cycles.  I've had as many as 12 during one 24-hour period with better than half coming at night while trying to sleep...  Not fun as you already know.

Why this happens is still subject to conjecture, but my experience tells me these high cycles can be due to a low arterial pH (too much acid), some kind of allergic reaction that results in neurogenic inflammation, a known component of the cluster headache syndrome, or a combination of the two conditions. 

These high cycles can also be due to a vitamin D3 deficiency as few of us get the needed exposure to direct sunlight without SPF 30 sun block or take sufficient vitamin D3 supplements. 

Vitamin D3 is essentially free.  Our skin can generate as much as 10,000I.U. of vitamin D3 in as little as 30 minutes exposure to direct sunlight in a bathing suit.  However the skin cancer folks have us smearing SPF 30 sun block on exposed skin and that prevents generation of sufficient vitamin D3.

Increasing verapamil dosage is a double edged sword. On one hand it might help (although it hasn't been very effective at the present dose), and on the other, you could experience some of the more invasive side effects of verapamil if you increase the dose.  Verapamil can do a number on your heart and blood pressure so don't increase the dosage without first consulting with your doctor.  An EKG is also a good idea.

Taking melatonin also works for many CH'ers, and if it works for you, don't fight with success.  However, to my way of thinking, using melatonin is only treating symptoms of the first three conditions.

What I've found works best for me and a growing number of other CH'ers who have tried it, is a combination of two regimes that are readily available over the counter. 

The first is a buffering regimen to elevate the low arterial pH that includes taking 3 to 4 calcium citrate tablets a day that contain vitamin D3, magnesium and zinc washed down with homemade lemonade.  I get these tablets at Costco and they're available at Sam's, WALMART, and most food stores.  Citracal Bone Density Builder has the same formula.  A slight change in diet to eat less red meat and more green veggies helps.

The second regimen has an anti-inflammatory affect and includes 2000mg. to 3000mg. Omega 3 Fish Oil and 10,000I.U. vitamin D3.  Both are available in softgel capsules and can be found at the same sources as the calcium citrate mineral supplements.

I've been on this combined regimen since last October and have been PF ever since.  I've had CH for over 17 years and have been chronic since 2005.  Since turning chronic, I've had several one to two week PF remissions, but I was unable to correlate these remissions to anything specific. 

For a few years, I attributed these wonderful remissions to the calcium citrate mineral supplements until a careful review of my CH logs found that during two of these remissions I wasn't taking this mineral supplement.  What jumped out of my CH logs instead was the interesting fact that all of the remissions corresponded with repeated exposure to sunlight for at least an hour a day wearing shorts and a tank top or a bathing suit.

Without a series of lab tests to determine arterial pH levels and 25(OH)D3, the metabolite of vitamin D3 most frequently used to measure serum levels of vitamin D3, the safe bet is to combine the two regimens.

If you take all this at face value, there's no real down side to this combined regimen.  It has no side effects and costs less than 10 cents a day.

As always, consult with your PCP or neurologist first before changing the dosage of any prescribed CH medication or starting this combined regimen.

Hope this helps,

Take care,

V/R, Batch
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« Last Edit: Feb 17th, 2011 at 11:16am by Batch »  

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red ryder
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Re: Oxygen working but getting rehit 1 hour later
Reply #8 - Feb 17th, 2011 at 5:12pm
 
Great info Batch,
I actualy went looking for your regimin when they started up full force. Funny I actualy bought lemonaid on the way to work today. I am taking  5000iu d3 by intself every other day and just started back up the calcium- mine is a combo of citrate-carbonate and another.

Batch, If you dont mind me asking which brand name product you use with the combo of mag- cal-zinc-D3. What brand of fish oil?  I have used nortic naturals in the past. I am a chiropractor and keep some of these suppliments in office. After 16 years of cluster headaches I Still have NOT found that magic chiropractic adjustment!!!  In my 10 years of practicing I've seen only  2 patients with clusters and I send them straight to this website and my local Headache specialist-neuro for O2!!!  I can help a tension HA, I can help a migraine--I am not going to stop a cluster Headache!!!!
I would love to try what you are using and give you some feedback.
Keep up the great work and research!!!!
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Re: Oxygen working but getting rehit 1 hour later
Reply #9 - Feb 18th, 2011 at 6:26am
 
Hi Red,
Batch has mentioned in previous posts that you should continue the deep breathing of O2 until all the symptoms are gone...If you stop the O2 before this, it might be the reason you are getting the repeat after 1 1/2-2 hrs...I am saying this because I get exactly the same repeat timescale as you are! I am not on any meds or O2 (yet).....

Batch, got my D-3 and 3 days into them, so not feeling like an 18 yr old yet!
and a lot easier to take than the Skullcap Bluuuurgh!

Respect

Gary
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Re: Oxygen working but getting rehit 1 hour later
Reply #10 - Feb 18th, 2011 at 10:22pm
 
Hey Red Ryder,

Good question…  As a rule, I try not to push any one particular brand of vitamins or mineral supplements in my posts.  Having said that, I do favor the brands that are made here in the U.S.   The two brands of Omega 3 Fish Oil and vitamin D3 I use the most are Nature Made and Puritan's Pride.  They both claim to manufacture and formulate their pharmaceuticals here in the US.

I've also found the calcium citrate tablets formulated with vitamin D3, magnesium and zinc made by Kirkland, Nature Made, and Citracal (Bone Density Builder) all have similar formulations and work well for me.

My rationale for selecting U.S. manufactured Omega 3 Fish Oil products is simple…  I'm not a sino-phob and for sure not a xenophob.  Having said that, the vitamin and mineral pharmaceutical market is flooded with Chinese products.  Moreover, as Chinese manufacturers are not well known for quality control and I'm sure the FDA has it's hands full trying keep up with all the pharmaceuticals imported from China, I'd just as soon buy American when it comes to the vitamins and mineral supplements I take.

Out of curiosity I did some checking. Nature Made is owned by Pharmavite® LLC who actually manufactures Nature Made pharmaceutical products.  It in turn is owned by a parent company, Otsuka Pharmaceutical, Japan.  Although ultimately owned by a Japanese firm, Nature Made is one of the largest firms in this market segment. 

They've also had to defend the purity of one of their fish oil products in a recent law suit due to traces of Polychlorinated Biphenyls (PCB) that exceeded the California Proposition 65 limits of 90 parts per billion (90 ppb).  In it's defense, Nature Made claimed their fish oils are well below the FDA’s tolerance limit for PCB in fish which is 2000 parts per billion (2000 ppb, 2 mcg/g or 2 mg/kg). 

When I tried to run this story to ground it appears the Nature Made Fish Oil product in question in the lawsuit was cod liver oil and not their Omega 3 Fish Oil.  It turns out that it's nearly impossible to remove all PCBs, dioxins and mercury from fish oil.  Moreover, most Omega 3 Fish Oils are purified with a process called molecular distillation that brings PCB, dioxin and mercury levels down to the point where they are difficult to detect and well below levels the FDA considers safe.  As a matter of fact, Nature Made also lists the PCB assay of their Omega 3 Fish Oil on the label at "less than 0.09 parts per million" (that’s less than 90 ppb) so it meets or is less than the more stringent California Proposition 65 limits of 90 ppb.  I'm still using them.

From what I can tell, Puritan's Pride is a home grown US firm from the get-go.

Most of the Omega 3 Fish Oil products in the market today are refined with molecular distillation from anchovies and sardines caught off the coast of Chile because these species are highest in the Omega 3 fatty acids EPA and DHA.  Fish that live longer, grow larger and that are higher up in the food chain tend to collect or bioaccumulate more fat soluble PCBs, dioxins and mercury.

Accordingly, I gladly take the Omega 3 Fish Oils, vitamin D3 and would eat three to four servings of wild salmon a week if I could afford them. I just think the wild salmon tastes much better.  The farmed salmon is also ok and in a pinch I'll eat it. 

My rationale on all this is simple.  Last August while salmon fishing in Ketchikan Alaska, I met with gent working on his Doctorate in Marine Biology at the University of Washington.   He was collecting samples of wild salmon for PCB, dioxin and mercury tests as a part of his doctoral thesis.  He indicated from the test results he's seen over the last few years, there is no significant difference between wild salmon and some of the farmed salmon with respect to levels of PCBs, dioxins, and mercury.

I'm a native of the Pacific Northwest so salmon fishing is a routine activity and seafood has always been a part of my diet.  To put this in perspective, I've no problem with the above brands of Omega 3 fish oils.  The benefits far outweigh any potential risks from PCBs, dioxins, or mercury.  So far, I've not found any deaths related to the regular consumption of salmon or Omega 3 Fish Oils… 

I'm sorry to say we can't say the same for verapamil. You'll see what I mean if you take a look at the following link that provides statistics on adverse reactions and side effects attributed to verapamil as reported to the FDA.

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The links relating to death and verapamil are sobering:

Index of reports > Cases resulting in death (133)
         Completed Suicide (104),  Cardiac Arrest (12),  Drug Toxicity (10),  Poisoning (10),  Cardio-Respiratory Arrest (6),  Intentional Drug Misuse (5),  Poisoning Deliberate (5),  Medication Error (5),  Respiratory Arrest (5),  Intentional Overdose (4)

Try to find similar data on adverse reactions to Omega 3 Fish Oil or oxygen therapy...

Hope this helps.

Take care,

V/R, Batch
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« Last Edit: Feb 19th, 2011 at 9:05am by Batch »  

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Re: Oxygen working but getting rehit 1 hour later
Reply #11 - Feb 19th, 2011 at 8:44pm
 
Hi Red
One thing worth a try is taking 1 Imigran (Aus) tablet after you have killed the hit with o2 & before you do the follow up breathing to prevent rebounds.
Why this works for some I don't know as usually Imigran in tablet form is not worth a pinch of Cocky's; it wont work if you take it before hitting the o2 or if you wait till after, for some reason it only works for me by taking it in that middle point, by doing this I have been able to get around 6-8 hours PF time & some very valuable ZZZ's.

Cheers
Barry
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« Last Edit: Feb 19th, 2011 at 8:45pm by Barry_T_Coles »  

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Re: Oxygen working but getting rehit 1 hour later
Reply #12 - Feb 19th, 2011 at 8:45pm
 
Hey Red Ryder
I have been on Batch's regimen for about three weeks and they've helped considerably so I hope the same for you.  For me I noticed a difference after three to four days.  There's certainly something about vitamin D.  I was talking with a friend of mine today who was suffering from depression starting in November.  Her M.D. put her on 100,000 IU of vitamin D3 a week (50,000 twice a week) and nothing else.  She told me it took about three weeks to kick in and when it did it made a HUGH difference in her depression - as in it was gone.  On a different post I noted a study which found vitamin D3 receptors in the hypothalamus, the part of the brain where current research suggests CH's originate.
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Re: Oxygen working but getting rehit 1 hour later
Reply #13 - Feb 21st, 2011 at 10:15am
 
Thanks Barry and Glassman, I pm'ed Batch and fully started his routine yesterday. Still got hit every other 1 1/2 hours last night. But was able to abort the hits quick with O2. I am praying this will space out the nightime hits or stop them all together. Its funny as long as I am up and not sleeping they do not hit me. So I am thankful of this. I have some  (migranol) dihydroergotamine from 1 1/2 years ago that I am trying to stay away from, plus I don't know if it has lost its effectiveness. Migranol always gave me 2 days and nights of no hits- but is some powerful stuff  (to my body anyways). I will keep everyone one up to speed after a couple of days of Batch's plan. Thanks everyone.   Jay
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Re: Oxygen working but getting rehit 1 hour later
Reply #14 - Feb 26th, 2011 at 8:03am
 
Red Ryder,
I'm interested in knowing how it's going with the supplements.  Any progress?
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Re: Oxygen working but getting rehit 1 hour later
Reply #15 - Feb 26th, 2011 at 11:28am
 
Hey guys, still getting hit every 1 1/2 hours after trying to sleep. No hits durring the day. I am draining an E tank every night. 02 is killing them within 10 minutes or less if I catch it quickly, just not getting enough sleep. I don't know like someone else posted if it matters at what time of the day the cal-mag-d3-fish oil needs to be taken. I am taking it all in the morning now- maybe I should try splitting up durring the day into two doses. I am still taking the verapamil (80mg) every 5 hours. Am wondering if it is even helping-or if it is and that is why I am not getting hit durring the day at all. I wonder if taking 160 mg right before bed might decrease the hits at all, that would put me up to only 480 mg total for the day.  Anyway , still trying to play with Batch's formula as to the amounts taken and at what time of the day. I will keep you guys posted. Thanks for the help.    Jay
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Re: Oxygen working but getting rehit 1 hour later
Reply #16 - Feb 27th, 2011 at 11:28am
 
I split up the supplements through the day taking them at breakfast, lunch time, and then dinner. Sometimes, instead of dinner I'd take that evening batch just before bed with a piece of toast or a small bowl of cereal.
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Re: Oxygen working but getting rehit 1 hour later
Reply #17 - Feb 28th, 2011 at 9:39am
 
Wow , First day of no headaches. Slept all last night for 7-8 hours. I believe Batch is on to something. I am up to 10,000 iu of D3. I also was out in the sun a lot yesterday. Started taking it (D3) all in am, then splitting the fish oil and other suppliments to am and pm. Also am up to 9mg melatonin before bed. This is the first time in 17 years that I slept through the night without DHE or either the cycle ending. But only 3 weeks into cycle this was just awesome. Praying for more nights like this.    Jay
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Re: Oxygen working but getting rehit 1 hour later
Reply #18 - Feb 28th, 2011 at 10:37am
 
Jay that's fantastic news, praying the regimen continues to work for you.

Joe
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Re: Oxygen working but getting rehit 1 hour later
Reply #19 - Feb 28th, 2011 at 1:31pm
 
Great news Jay!  Hope it keeps up... let us all know!
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Re: Oxygen working but getting rehit 1 hour later
Reply #20 - Apr 26th, 2011 at 5:29pm
 

   Is your hit that comes one hour later worse then the hit that the O2 helped abort?

   The reason I asked is that O2 used to abort the first hit I would get in the morning. The next one came 1 hour later and was much worse (came to a peak very, very quickly and the pain was more ferocious then the previous attack. then the next one would last the usual 3 hours and the O2 would rarely help at all. I wish I had more to offer, but I would also like to know if anyone has found a way to fix this problem.

      Thanks MikeS
    


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