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Sean0308

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Chronic Cluster Headaches
Dec 25^th, 2013 at 1:04pm

Hi I am having chronic cluster headaches. I am having them 3-4 times a day for the last 2 months. I use sumaville dose pro shot 6mg everyday 3 times a day to abort the headache. I am now starting to get rebound cluster headaches now. I have been through many medicines they don't work or I have a reaction. I used verapamil high doses that worked the best. Along with horizant and gabapentin. I got porphyria from verapamil and had to be pulled off. I am now going through lyrica gralise and topamax. That is no longer working. I am now going through iv treatment I started last Wendesday DHE that worked great for 5 days. I finished Sunday night that was my last dose. I was getting it twice a day. Monday I woke up with a full blown cluster and I had 2 more that day. Tuesday I woke up with a full blown cluster. I started magnesium 500mg or 1000mg I can't remember. Today I woke up with a full blown cluster. I am also on iv magnesium again and my last dose is tomorrow. I get it once a day. I am also on d3 1000iu daily orally with my other medicines. I was on d2 50000iu to get it up quick because it was low my D3. I know my doctor did the DHE and Magnesium wrong. I have been told by the in home nurses. They said all the neuroligist order the magnisum the same time they do the DHE. My question is I heard sansert works great but it was pulled off the market do they still make it. If not is their something close to it. I also have done the shots in the front and back of the head. My next question is do they make steriods that are very strong that can be done through an iv to break the cycle. I have been on oral steroids that were a high dose but they did not break the cycle. I have been on them 2 in a row. Anyone have any suggestions or comments I would live to know or hear them. I have tried oxygen with the mask on this site and the 15 lpf if that is right I know it was 15 but it did not work at all. Thanks.

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Bob Johnson

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Re: Chronic Cluster Headaches
Reply #1 - Dec 25^th, 2013 at 2:32pm

1. Are you working with a headache specialist?

2. Ask for a few samples. You will know with 1-3 doses whether this one works for you.

-----
Headache 2001 Sep;41(8):813-6

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====
3. Has your/any doc considered your Dx thru this lens?

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

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Bob Johnson

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Sean0308

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Re: Chronic Cluster Headaches
Reply #2 - Dec 25^th, 2013 at 5:40pm

Hi I have been to UVA VCU and Mayo Clinic. I seen the neuroligist their and headache specialist. UVA gave me steroids twice that was it. VCU would not treat me. I also seen Mayo Clinic they would not help me either which made me mad. I have a Neuroligist here he really doesn't know how to treat me he has never seen a 15 year old with clusters as sever at this age. He wants me to do gama ray. I am not to keen on it because it could make you go blind. What do you mean by dx by lense. I had my putitatary gland and that was normal. Thanks.

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Chronic Cluster Headaches Reply #3 - Dec 26^th, 2013 at 7:00am "lens" is a way of saying: Ask the doctor to consider that you don't have Cluster but any one of a nulmber of conditions which mimic Cluster. Print out the piece message I cited and give to your doc; he will understand the issue. Best,
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Imitrex4Breakfast

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Re: Chronic Cluster Headaches
Reply #4 - Dec 27^th, 2013 at 5:39pm

Bob Johnson wrote on Dec 25^th, 2013 at 2:32pm:

1. Are you working with a headache specialist?

2. Ask for a few samples. You will know with 1-3 doses whether this one works for you.

-----
Headache 2001 Sep;41(8):813-6

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====
3. Has your/any doc considered your Dx thru this lens?

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

ANOTHER ZYPREXA BOMBARDMENT !! SHALL I KEEP POINTING ALL OF THESE OUT ON IRRELEVANT SUBJECTS ?? DOES BOB OWN STOCKS IN THE COMPANY ?? IS THIS WHAT OCD LOOKS LIKE ??

Solumedrol is a powerful IV or IM steroid, but it usually only works temporarily. The odds of it breaking a cycle are very rare, but I guess possible.

Sansert is NOT available in the USA, but the last I heard, it can be ordered by doctors from Canada. (weird) ... ALSO -->SANSERT (Methergine) and other drugs like this CANNOT BE USED WITH TRIPTANS OR DHE drugs (ERGOTS). This can cause a "cardiac event". Research before even asking about Sansert. It's a very powerful vasoconstrictor too. Too many constrictors at once can cause heart spasms or worse because you're squeezing the blood and oxygen out of your heart and other organs.

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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: Chronic Cluster Headaches Reply #5 - Dec 27^th, 2013 at 5:44pm WOW I4B.....a strong reaction there, clearly something you're passionate about. Bob was sharing a med which worked well for him and suggested the person discuss it with their doctor......I'm pretty sure Bob is not a stock holder in the company. Joe
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Sean0308 CH.com Junior Offline I Love CH.com! Posts: 27 Gender:	Re: Chronic Cluster Headaches Reply #6 - Dec 27^th, 2013 at 9:50pm Anyone ever used IV methylprednisolone 250-500mg. This is going to be my next treatment to try and break this cycle. It is a sting dose but if it works it works.
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jon019

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Re: Chronic Cluster Headaches
Reply #7 - Dec 28^th, 2013 at 12:10am

Sean0308 wrote on Dec 27^th, 2013 at 9:50pm:

Anyone ever used IV methylprednisolone 250-500mg. This is going to be my next treatment to try and break this cycle. It is a sting dose but if it works it works.

Hi Sean,

Yes.....yrs ago after a 7 yr hiatus without meds this was the first thing new doc tried...I suspect the "clean" system helped. Stopped a mad bad cycle midcycle nearly instantly..and I always thought you had to hit a cycle quickly before it ramped up. Near miracle which lasted for about 8 months. Tried once or twice more (I forget) with absolutely no success...no longer can due to other issues. Methylpred is indeed much stronger than prednisone....but its a short term deal so fewer issues for concern. Note it is normal for a taper of oral tabs after the IV...

Best

Jon

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Batch

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Re: Chronic Cluster Headaches
Reply #8 - Dec 28^th, 2013 at 1:45am

Hey Sean,

Why not give the anti-inflammatory regimen a try instead of the methylprednisolone hot shot... Only this time take the full vitamin D3 dose of at least 10,000 IU/day vitamin D3 and not the vitamin D2 injection...

We've collected sufficient data from hundreds of CH'ers using this regimen and it's clear we need a therapeutic 25(OH)D response between 60 and 110 ng/mL... Most CH'ers who respond to this regimen have a 25(OH)D serum concentration around 80 ng/mL. That takes a minimum of 10,000 IU/day vitamin D3 and all the cofactors as shown in the following chart.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

This dose is very safe... Your skin can make as much as 15,000 IU vitamin D3 in as little as 10 minutes exposure to the UV-B in high-noon sunlight clad in a bathing suit without any sun block.

Multiple Sclerosis patients take even higher doses of vitamin D3 without any problems associated with vitamin D3 toxicity.

The methylprednisolone hot shot will likely work to prevent your CH for a few days... That said, I'm not sure you'll like the side effects. It's a very powerful anti-inflammatory.

Take care and please keep us posted.

V/R, Batch

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Artworks

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Re: Chronic Cluster Headaches
Reply #9 - Jan 4^th, 2014 at 10:26am

Hey Sean, a couple of things.

First, I am on the D3 regimen and, while it it too soon to tell for sure, there are some signs it may be working for me. It is a very low-risk, low-cost option and I agree with Batch that it is well worth considering.

Second, about sansert, one of its side effects (and, I believe, the reason it is no longer available in the U.S.), is lung fibrosis. My neurologist has told me that if lung fibroids start to grow, use of trex (or any of the triptans or ergots) would be medically contraindicated. I don't know about you, but I would never do anything that might take trex injections away as an abortive measure.

Art

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