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lsarver3808

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Any new treatments that are working? Been 1.5 yrs
May 20^th, 2013 at 9:09am

My husband started a new cycle after a year and a half. He tried D3 last time and his cycle lasted longer than normal. It lasted 4 months instead of 6-8 weeks so not sure if I can convince him to try it again. He has not had much success with anything except oxygen which I put an order in for today. Was hoping there have been some advances. Hate to even look here when he is not in cycle because it feels like I will bring it on.---Lori

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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: Any new treatments that are working? Been 1.5 yrs Reply #1 - May 20^th, 2013 at 9:42am Good morning. I could offer some good info, but first prefer you clarify...is he in cycle or not? Your 1st line states he is in cycle, your last line states he is not. Which is it? -Gregg in Las Vegas
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lsarver3808 CH.com Junior Offline I Love CH.com! Posts: 62 South Park, PA	Re: Any new treatments that are working? Been 1.5 yrs Reply #2 - May 20^th, 2013 at 9:55am He is in cycle. Just started. Sorry for the confusion!
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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Any new treatments that are working? Been 1.5 yrs Reply #3 - May 20^th, 2013 at 10:04am It would be helpful if you give us a list of meds used, dosing, duration of use before being dropped.
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Re: Any new treatments that are working? Been 1.5 yrs
Reply #4 - May 20^th, 2013 at 10:11am

Lori, i'm sure others will provide helpful info, but here's my 2 cents:

Anti-inflammatory regimen includes Vitamin D3 at 10,000 iu daily, Daily multi-vitamin (containing K2, A and Zinc at RDA percentages), Calcium Citrate 500 mg daily, Magnesium Citrate or Malate at 400 mg daily, Omega 3 Fish Oil - 1000 to 2400 mg/day (EPA 360 mg/day, DHA 240 mg/day minimum).

Hyperventilating O2 at 25 lpm with non-rebreather mask.

Red Bull, Monster, Rock Star, energy drinks containing Taurine/Caffeine combo.

Magic mushrooms go to clusterbusters.com

Traditional medicines of Prednisone taper started in conjunction with Verapamil are still very common prescriptions and helpful to most of us. Lastly, Imitrex injections opposed to pills.

Hope this helps. Wink

-Gregg in Las Vegas

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« Last Edit: May 20^th, 2013 at 10:11am by LasVegas »

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lsarver3808

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Re: Any new treatments that are working? Been 1.5 yrs
Reply #5 - May 20^th, 2013 at 10:45am

Tried Verapamil and prednisone. Does not really help. Oxygen is the only thing that has helped. Made an appt. with a neurologist for the 28th of this month. Imatrex pills did not help. Finally have decent insurance now. As I said before D3 did nothing for him, in fact had a longer cycle. Tried melatonin. Did nothing. --Lori

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Any new treatments that are working? Been 1.5 yrs Reply #6 - May 20^th, 2013 at 10:49am You don't list any dosages or adjuncts that were taken with the D3. Sorry, I can't be of much help.
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Re: Any new treatments that are working? Been 1.5 yrs
Reply #7 - May 20^th, 2013 at 10:59am

Lori, consider this...just because one tries something unsuccessfully once, does not necessarily mean it is a total failure and not to try again.

Perhaps the type of Pred he used, the dosage, the duration, the Verap dosage, the Verap type, when he started the Verap in conjunction or not with Pred, etc, at what times of day or night he took the meds, with or without food, etc , how long he took each before stopping, etc., etc. Far too many variables to just throw in the towel on the most widely accepted medicine treatment for CH's. Share with us the details of exactly what his Pred/Verap prescription was and perhaps we can be of further assistance.

I mentioned Imitrex pills don;t work for most of us as they take too long. Imitrex injections are the preferred Sumatriptan followed by nasal sprays; again not the pills.

Melatonin has been reported effective for many CH'ers reducing KIP levels and frequency of night time hits. Of course depending on the type used, when it's taken, mg dosage, etc.

The Beast will morph each cycle and is very unpredictable. So what worked once may not work again. What did not work before, may work now. Unfortunately it is a torturous trial and error. A headache log aka documentation of EVERYTHING is truly required to establish an understanding of patterns and statistics.

One thing is for sure, we have very limited options available so quitting and/or stating it dodn;t work before so not going to try it again is NOT the proper attitude.

Stick around, do some reading and get your husband on the board to educate himself as well. I commend you as a supporter, it's tough to help others afflicted by our disease. Hang in there for him! Wink

-Gregg in Las Vegas

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Re: Any new treatments that are working? Been 1.5 yrs
Reply #8 - May 20^th, 2013 at 11:08am

Brew wrote on May 20^th, 2013 at 10:49am:

You don't list any dosages or adjuncts that were taken with the D3.

Sorry, I can't be of much help.

Exactly! Chances are he was not taking the vitamin regimen EXACTLY as Batch suggested. It's certainly worth giving it another try. Might even get himself a test of his 25(OH)D levels just to confirm where he's at on the D scale.

I've learned the hard way, that a slight deviation of co-factors may prevent one from achieving success with this regimen. Example would be taking all of the ingredients of this vitamin regimen not just D3. Or taking Citrate form of Calcium or Magnesium opposed to Oxide form due to the bioavailability issue. Again, trial and error.

Hang in there Lori, we'll educate you soon enough so you can get your husband hopefully feeling better soon.

-Gregg in Las Vegas

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Batch

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Re: Any new treatments that are working? Been 1.5 yrs
Reply #9 - May 20^th, 2013 at 12:07pm

Hey Lori,

Brew and Gregg have asked some great questions. I'll add one more regarding vitamin D3 therapy... Has your husband had the lab test for 25(OH)D? That's the serum level metabolite of vitamin D3 that's used to measure it's status.

The normal reference range for the 25(OH)D lab test is 30 to 100 ng/mL. Unfortunately, too many physicians will interpret 31 ng/mL as "normal." While that may be true as a high enough concentration to prevent rickets and osteomalacia... it won't do diddly for cluster headache. The 25(OH)D serum concentration needs to be much higher to prevent cluster headaches.

It's understandable that most CH'ers will get impatient when starting a new preventative therapy... When the beast is hammering away around the clock, day after day, all of us expect results in hours or a few days. Unfortunately, without a lab test for 25(OH)D, there's no sure way to determine how long it's going to take to respond to vitamin D3 therapy.

As the following chart indicates, it can take up to two months dosing on 10,000 IU/day vitamin D3 for some to experience a pain free response or a significant reduction in the frequency, severity and duration of their cluster headache attacks.

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Data we've collected here at CH.com and from the online survey of CH'ers using the anti-inflammatory regimen with 10,000 IU/day vitamin D3 indicate the therapeutic range for 25(OH)D where nearly all CH'ers experience a sustained response to this regimen is 60 to 110 ng/mL.

That means the target 25(OH)D serum concentration to shoot for is 85 ng/mL. It will take a vitamin D3 dose of 10,000 IU/day along with Omega 3 Fish Oil, calcium and the vitamin D3 cofactors to reach that serum concentration.

Many CH'ers have used a more aggressive vitamin D3 dosing schedule taking 15,000 to 20,000 IU/day plus a weekly loading dose of 50,000 IU to reach that therapeutic range. This is a very safe and well tolerated dosing schedule.

'Hope this helps. Please keep us posted.

V/R, Batch

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Bob Johnson

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Re: Any new treatments that are working? Been 1.5 yrs
Reply #10 - May 20^th, 2013 at 7:30pm

Ref. post #5, meds: ASSUMING you were using the appropriate doses of these meds, that these didn't work is a clue.

These are mainline Cluster meds, so the lack of benefit points to you the possibility that Cluster headache is not the issue. There are a variety of disorders which mimic Cluster but which are not primary headche disorders. It takes a sharp doc to look at the possibilities of such a situation so hope you are working with a headache specialist.

Suggest you print out the following and give to any doc you see. A fresh perspective is often useful in medicine.
---

Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
===
Also print out the PDF file, below. These are the standard meds for Cluster, dosing, and ratings on effectiveness. Check doses here with the doses you used for another clue.

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« Last Edit: May 21^st, 2013 at 8:20am by Bob Johnson »

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Guiseppi

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Re: Any new treatments that are working? Been 1.5 yrs
Reply #11 - May 21^st, 2013 at 9:13am

Thanks for being the supporter who does the footwork for her sufferer. We consider our supporters golden!

In order, Batch's post. That stuff is golden. We've never seen a treatment that provided relief to the majority of people who tried it. His posts can get a bit long and technical but they are GOLDEN

Bob's post. He is our research guru and knows of what he speaks. There are several headache types which somewhat mimic CH, when many of the standard treatments provide no relief, it opens the door to the possibility you may have another issue, either INSTEAD of CH, or in ADDITION to CH.

Thanks again for your footwork on behalf of my CH brother. If my wife hadn't found this board I'd still be snorting lidocaine and pounding my head against the walls!

Joe

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lsarver3808

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Re: Any new treatments that are working? Been 1.5 yrs
Reply #12 - May 21^st, 2013 at 12:00pm

He has an appointment with one of the associates of one of the Nuerologists listed on the Ouch website Monday. For years he was treated for sinus infections and I could not understand why the antibiotics did not work for him. That was when I found information on cluster headaches and realized that this was indeed what I was watching my husband suffer through year after year for weeks on end. I took the info to our primary care dr and he agreed with me and put him on prednisone and verapamil and o2. Sorry if I don't remember the dosages. The only thing that seemed to help was the o2. That is why now that we have insurance, I made the appt with the neurologist hoping that since they specialize in this type of stuff that they might better be able to prescribe something to help him. Had trouble yesterday with a different dr in the practice who would not prescribe him the o2. Said he didn't need that much o2 and that if we put the pulse ox on his finger it would not show lower oxygen levels therefore she would not prescribe it. He is going to a different dr in the practice today to hopefully get things on track. I was so mad I was crying yesterday when they told me this. If it was their loved one suffering so, I am sure they would have done something. Was just looking for possibly some new advances in the time he has been pain free. As I said before, coming here when he is not in cycle feels like I am willing it to happen again when all I want is for them to go away completely. This beast robs me of my husband. He withdrawls from us and understandably becomes very short tempered since he is so tired. These attacks take everything out of him. But I am preaching to the choir here. You all know how brutal they are.

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Batch

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Re: Any new treatments that are working? Been 1.5 yrs
Reply #13 - May 21^st, 2013 at 7:52pm

Lori,

Blood oxygenation levels have no relationship to the cluster headache abortive effect of 100% oxygen.

Tell the physician, the oximetery test is for COPD, NOT OXYGEN THERAPY FOR CLUSTER HEADACHE !!!! THESE ARE TWO ENTIRELY DIFFERENT MEDICAL CONDITIONS AND SO ARE THE METHODS OF PROCEDURE IN ADMINISTERING OXYGEN THERAPY !!!

I've got a finger pulse oximeter and road out several cluster headaches with 99% SpO2 for up to an hour without any relief at an oxygen flow rate of 7 to 9 liters/minute and a only slightly better response at 15 liters/minute.

It wasn't until I increased the oxygen flow rate up to 25 liters/minute and above that I started to experience what we call rapid aborts of cluster headache attacks in the 4 to 7 minute range to a pain free response.

The most effective methods of oxygen therapy as an abortive for cluster headache involve 100% oxygen flow rates that support hyperventilation ≥25 liters/minute with 40 liters/minute being optimum for the fastest aborts.

What makes oxygen therapy most effective is casting off CO2 faster than the body generates it through normal metabolism. This results in respiratory alkalosis, hypocapnia (lower than normal arterial CO2 levels) and an elevated arterial pH... These conditions in turn stimulate the rapid vasoconstriction that's associated with very fast and very safe cluster headache aborts with oxygen therapy.

The CH'er needs to intentionally hyperventilate with 100% oxygen until the symptoms of respiratory alkalosis are clearly present. These symptoms are also called paresthesia. They include a slight tingling or prickling of the lips, finger tips and back of the neck. The CH'er might even experience a very slight dizzines. These symptoms are VERY NORMAL when hyperventilating with 100% oxygen and they are VERY SAFE...

I have prayed to pass out using this method of oxygen therapy and in 11 years of using it... that never happened.

See the following link for a detailed level of information how and why this method of oxygen therapy is so effective:

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I developed the original method of oxygen therapy at flow rates that support hyperventilation in 2005. In 2007, Michale Berger and I modified that procedure to work with an oxygen demand valve provided by Royce Fishman who was working for Linde at the time. We filed the above patent when the results of our own pilot study indicated this method of procedure was far superior to oxygen therapy at a flow rate of 15 liters/minute. See the results of our pilot study of oxygen therapy at flow rates that support hyperventilation in following comparison with oxygen therapy at a flow rate of 15 liters/minute:

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Participants in this study logged abort times and pain levels on every cluster headache they aborted with oxygen therapy for 8 weeks...

They compiled a total of 366 aborts using oxygen therapy at flow rates that support hyperventilation or with a demand valve... Both methods worked equally well with the 7 participants using a 0-60 liter/minute oxygen regulator from Flotec or an Oxygen Demand Valve.

Try to get your husband the lab test for 25(OH)D when he sees the neurologist on Monday... He is likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of his cluster headaches. The anti-inflammatory regimen with 10,000 IU/day vitamin D3 is the latest, safest and most effective method of preventing cluster headache... No reports of serious side effects...

Take care and please keep us posted.

V/R, Batch

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« Last Edit: May 21^st, 2013 at 8:01pm by Batch »

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lsarver3808 CH.com Junior Offline I Love CH.com! Posts: 62 South Park, PA	Re: Any new treatments that are working? Been 1.5 yrs Reply #14 - May 21^st, 2013 at 11:46pm Batch, I would like to print out some information to take along to the dr on Monday about the D3 therapy. What would you suggest I print? Thanks---------Lori
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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Any new treatments that are working? Been 1.5 yrs Reply #15 - May 22^nd, 2013 at 8:17am Print everything Batch wrote and bring it with you. And good luck with that, but if it doesn't pan out, there is advice here on using welding O2 for which you do not need a Rx. blessings. lance
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Batch

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Re: Any new treatments that are working? Been 1.5 yrs
Reply #16 - May 22^nd, 2013 at 11:27am

Hey Lori,

I keep the following link updated with the latest information on the anti-inflammatory regimen and results from the online survey.

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It contains a section I prepared to help physicians understand the importance of vitamin D3 and 25(OH)D serum concentrations as a cluster headache preventative. That section starts with the following title:

Basic and Complete Anti-inflammatory Regimen
Treatment Protocol and Dosing Guide
Copy this section to the end of the post and print. It should help when you see your neurologist and ask for the 25(OH)D lab test.

It's unfortunate, but some neurologists are dismissive of the benefits of vitamin D3 at a dose of 10,000 IU/day or 25(OH)D serum concentrations in a range of 60 to 100 ng/mL as a cluster headache preventative... Some will even refuse to order this simple lab test.

Take care and please keep us posted on the results of your husband's upcoming visit with the new neurologist.

V/R, Batch

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« Last Edit: May 22^nd, 2013 at 11:34am by Batch »

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Any new treatments that are working? Been 1.5 yrs Reply #17 - May 22^nd, 2013 at 1:23pm I've said it before and rest assured I'll say it again Batch: You sir, are the man. Joe
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Bill

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Re: Any new treatments that are working? Been 1.5 yrs
Reply #18 - May 26^th, 2013 at 2:21pm

I'm in the middle of an episode now, getting 1-3 per day, mostly early in the morning. I have had episodic clusters approximately every 2 years for the last 20 years.

I have tried a number of preventatives ( no luck at all) and abortives (O2, ergotamine, cafergot, imitrex) with limited success.

This episode and my last one, I have been treating solely with Red Bull. I love the stuff SO MUCH that I still had two in my fridge from my last episode over a year ago... Wink

But it works. I once drank an entire pot of coffee, and it didn't quite abort the cluster, so the Taurine has something to do with it - the fact that Taurine can apparently pass through the blood/brain barrier may be the key.

Tips:

I have gotten pretty good at catching the headaches early, when they are still down in the 3-4 range. I'm not sure how well this would work for a 7 or 8.
Obviously, get it down as fast as you can. Relief takes about 5-10 minutes.
It doesn't always completely kill the headache, but its almost always gets it down to a tolerable range.
All the flavors are like lightly carbonated pancake syrup, but lime (silver) is the most tolerable (especially at 3 in the morning.)

Major downside: I feel like I have forgotten how to sleep. But its a lot better than a cluster... Shocked

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Batch

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Re: Any new treatments that are working? Been 1.5 yrs
Reply #19 - May 27^th, 2013 at 3:16pm

Hey Bill,

Give the anti-inflammatory regimen a try... The instructions are at the following link:

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A few days to a week or two on this regimen and your cluster headaches will become a thing of the past... You'll also be sleeping like a baby...

The efficacy of this regimen is holding strong at 81% and most of them experience a lasting pain free response as long as they stay on this regimen.

Take care,

V/R, Batch

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