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Mle

Cluster headache and multiple sclerosis

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Hi all, I'm just throwing this topic out there to see if anyone else has this combo. I've had ch for 15 years and was diagnosed with ms 4 years ago but had symptoms for a couple years before that. The ch makes my ms symptoms worse which sucks. Anyway, I believe both ch and ms are malfunction of the immune system so I was wondering if anyone else had this combo? Thanks

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I don't have MS but I have done some research on it for a couple friends of mine.  (I'll also note that in all my experiences with CH and CH sufferers over the years, I can't remember meeting anyone that had both MS and Clusters.  Obviously it happens, but to me it does not seem like a very common occurrence.)

 

Much of my research with Clusters has centered around an inflammatory substance called Tumor Necrosis Factor (TNF).  This is one of many substances produced by the immune system.  When you need it, it's great--it eats away tumors.  When you don't need it, it can cause a huge inflammation problem and has been implicated in all sorts of disorders.  High TNF levels have never been proven in Cluster Headache but I can't find one study that has explored the idea.  I suspect that cluster sufferers have high amounts.  The reason that I bring this up is that the psychedelic therapy is very good at lowering TNF levels, to the point that all hallucinogens that hit the 5ht2a receptor (the receptor that LSD and Psilocybin hit) are considered "super potent inhibitors" of TNF.  I think even if it is just one part of the equation this reduction in inflammation helps tame down the clusters.  

 

With MS, high levels of TNF have also been found.  The problem is, that when TNF has been lowered in these people sometimes MS seemed to get worse. There are some cases (mostly with rheumatoid arthritis) where people went on TNF lowering drugs and somehow ended up triggering an onset of MS that was not there before.  Admittedly, the way the hallucinogens work to lower TNF levels is a very different way then the way prescription TNF inhibitors work, but whether or not it could produce the same symptoms is anybody's guess until we do more research.  Searching the internet you don't find a lot of reports of people with MS taking psychedelics.  When I looked (not super hard or for a long time) I found 2 cases.  One was about a woman in the 1960's who had received legal LSD to treat her MS.  Supposedly it did not work, but there was no mention of her actually getting worse.  The other report was from a guy claiming his girlfriend with MS had taken 1 gram of mushrooms and thought that it had made her MS flare up.  

 

On the other hand, here is a person talking about clinics in Mexico that treat MS with Ibogaine, another hallucinogen somewhat related to the ones we use for busting.   http://www.thisisms.com/forum/natural-approach-f27/topic24133.html

 

I wish I could tell you that the psychedelics are good or bad for MS, but unfortunately I don't think anybody knows that for sure at this point.  I do know that stimulating certain muscarinic receptors have been shown to be helpful for MS and some of the substances that I have found helpful for clusters as well.  These are substances that you need to be pretty careful with, like Mandrake and Datura.  Let me know if you are interested and I will share whatever info I have on it.

 

Good luck,

 

Ricardo 

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Hi Ricardo, Thanks so much for the in depth reply. You've found more info than I have been able to uncover. Yea, I have a weird combo going on. I started ch 15 years ago when I was 30 and ms 5 years ago. Currently I'm exactly 60 days into a cluster and feel pretty bummed. I have a lot of fatigue with my ms and the ch knocks me on my butt. It's a good day when I have enough energy to shower and make dinner. Wahoo. I'm taking 40mg of celexa which I'm not willing to go off of to bust. I also take tecfidera for my ms. I'm a woman on the edge. Ha Im going to look into the links you posted. I'm using o2 at the moment to get through. It helps immensely with the pain, but even if the pain is diminished it doesn't help with the fatigue. Ah, I appreciate your reply.

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Sorry to be so late in replying.  I also have a diagnosis of both,  MS & Cluster Headaches. I have had both for several years (15+ years). There is currently no other family history of multiple sclerosis. My father (chronic sufferer) also has cluster headaches, but no other family history of cluster headaches  (multiple family members with migraine headaches though).

 

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Hey Mle and JenniDawn,

There is sufficient evidence to say cluster headache (CH) is an autoimmune disorder just like MS.  It also interesting to note that both disorders are highest among people who are vitamin D3 deficient...  When was the last time you had your serum 25(OH)D tested?  25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status...  The normal reference range for this lab test is 30 to 100 ng/mL...  Unfortunately, too many physicians will interpret 31 ng/mL as "Normal."  The real vitamin D3 experts say anything less than 50 ng/mL is insufficient and that 50 to 70 ng/mL is optimum for otherwise healthy adults...  As a CHer, we need 80 to 100 ng/mL and some need even higher levels.

Both CH and MS respond to a regimen of vitamin D3 and the vitamin D3 cofactors/conutrients if the vitamin D3 dose is high enough. 

I've been working with cluster headache sufferers (CHers) for over six years and have roughly 600 of them taking what I call the anti-inflammatory regimen with 10,000 IU/day vitamin D3, Omega-3 Fish Oil and the vitamin D3 cofactors/conutrients that include 400 mg/day magnesium 12 mg/day zinc, 1-3 mg/day boron, Vitamin B 100 complex, vitamin A (retinol) at RDA and vitamin K2 at 100 mcg/day.  I also have a close friend and Vietnam buddy who's wife has RRMS.  She's been taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 for over 4 years and has remained in remission the entire time.

You can download the latest version of the anti-inflammatory regimen CH preventative treatment protocol at the following link.

  Be sure to share a copy with your PCP or neurologist.   That way you're both singing from the same sheet music when you ask for the suggested lab test of your serum 25(OH)D, total calcium and PTH (Parethyroid Hormone).

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

You can also scan the following QR code with your smart phone and it will download a pdf copy of the treatment protocol to your phone as a ready reference.  If you don't have the QR Code Reader App, it's free and It takes less than 10 seconds to download and install.  

LkufLye.jpg

The really important news for you deals with the Coimbra Protocol for MS developed by Dr. Cicero Coimbra, MD PhD, a neurologist in Sao Paulo, Brazil.  His treatment protocol calls for much higher doses of vitamin D3 plus the cofactors.  Where the anti-inflammatory regimen with 10,000 IU/day vitamin D3 works out to 100 IU of vitamin D3 per Kg of body weight per day, the Coimbra Protocol calls for upwards of 1000 IU of vitamin D3 per Kg of body weight per day...  For a sleek rascal like me weighing in at 95 Kg, that works out to 95,000 IU/day of vitamin D3! 

What is also exciting is none of his MS patients on this protocol suffer from vitamin D3 intoxication/toxicity...  There's a good reason for this...  When MS patients start on this protocol, they need to avoid taking any calcium supplements and avoid calcium rich foods, i.e., dairy products... They also need to drink 2.5 liters of water a day to help their kidneys flush excess calcium from their systems.  Nearly all of his MS patients find this a very acceptable trade off.

You can read about Dr. Coimbra's work with his MS patients at the following links. He and his team of neurologists have treated over 3000 MS patients over the last 10 years and 95% of them are in complete remission.  Many have reported their existing MS lesions are shrinking or have disappeared completely.

https://www.vitamindwiki.com/Interview+of+Dr.+Coimbra+-+Vitamin+D+protocol+for+Autoimmune+diseases+–+2016

https://www.vitamindwiki.com/Multiple+Sclerosis+and+(lots+of)+Vitamin+D+-+book+by+patient+on+Coimbra+protocol+-+Feb+2016

 

There's also a very exciting study done by Dr. Jody Burton, MD et al. University of Toronto where she had 25 RRMS patients start an escalating dose of vitamin D3 from 4000 IU/day up to 40,000 IU/day and back down to zero on 6 week intervals for one year. 

This trial concluded with an averaged a vitamin D3 doses ~14,000 IU/day/year and 32/52 weeks spent at doses ≥ 10,000 IU/day:

·      • There was no hypercalciuria, hypercalcemia or parathyroid dysfunction

o   No radiological evidence of calcification

o   No clinical or biochemical adverse events

o   Significant reduction in RR and EDSS

o   Significant reduction in T-cell reactivity/proliferation

·    • Vitamin D3 intake up to 40,000 IU/day and prolonged intake of ~ 10,000 IU/day appears safe and is associated with improvement in clinical disease activity and T-cell reactivity.

  http://www.vitamindandms.org/researchers/burton/index.html

Take care and please let me know if this information is of interest.

V/R, Batch

 

 

 

 

 

 

 

 

Edited by Batch
QR Code graphic did not display properly

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Hey JenniDawn,

Thank you for the reply.  I know this topic sounds too good to be true, but it really is that good and all of it is true.  Six years ago no one thought taking vitamin D3 and the cofactors would prevent cluster headache...  It just couldn't be that simple...  In January of 2011, when the first few CHers tried the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and the cofactors, they were amazed it prevented their CH, some in less than 24 hours, Many of their posts at CH.com basically said "It can't be that simple," yet it was and still is.  The same goes for preventing RRMS with even larger doses of vitamin D3.

I've exchanged several emails with Dr. Coimbra and he is the real thing... as is the Coimbra protocol.  If you're interested in this protocol, there are two doctors trained in the application of the Coimbra protocol here in the US,  Dr. Barrett Ginsberg, MD or his wife.  Both are ophthalmologists in Naples, FL.  Barrett's wife's sister was diagnosed with RRMS so she flew to São Paulo, Brazil to study under Prof. Dr. Cicero Golli Coimbra MD, Ph.D.  Barrett is up on this protocol as well. I've spoken with Barrett several times and he accepts new MS patients even though he and his wife are ophthalmologist.  His contact data follows:

Website:  http://www.ginsbergeye.com/contact-us.html

Email:  Dr. Barrett Ginsberg, MD <vitamind@ginsbergeye.com>
Barrett Ross Ginsberg, M.D.
77 8th Street South, Suite B
Naples, Florida 34102
Phone: (239) 325-2015
Fax: (239) 325-2014

As if Dr. Ginsberg's email address wasn't a giveaway he's a vitamin D3 believer...  There's another vitamin D3 website you might want to browse....  The following two links will get you started at VitaminDWiki...  The webmeister at VitaminDWiki is Henry Lahore and his website is a cornucopia of all things vitamin D3.  I've known Henry for several years and visit with him frequently as he lives less than an hour's drive north of me in Port Townsend WA.

This first link will cover 80 medical conditions either successfully treated or prevented with vitamin D3 citing RCTs as medical evidence.  It's a jaw dropper...
https://www.vitamindwiki.com/Proof+that+Vitamin+D+Works

The second link covers all the studies of vitamin D3 treating MS.

https://www.vitamindwiki.com/Multiple+Sclerosis

So here;s the bottom line...  The relationship between cluster headache and MS is not a coincidence.  Both share a very common link... a vitamin D3 deficiency.  Moreover, both conditions respond to treatment with vitamin D3 and the cofactors if the vitamin D3 dose is high enough...

Sooo... when you see your neurologist, be sure to ask for lab tests of your serum 25(OH)D.  It will help if you take along a copy of the anti-inflammatory regimen.  If you don't want to wait until July, you can see your PCP for this same lab test and discuss the anti-inflammatory regimen.  I developed this treatment protocol for neurologists and headache specialists treating CHers and migraineurs so it's worded accordingly. 

25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status.  The normal reference range for this lab test is 30 to 100 ng/mL (75 to 250 nmol/L).  As CHers, we need to have our 25(OH)D up around 80 ng.mL in order to experience a lasting cessation of CH symptoms. Unfortunately, too many physicians will interpret a 25(OH)D serum concentration of 31 ng/mL as "Normal."  Nothing could be further from the truth...

I've had a online survey of CHers taking the anti-inflammatory regimen to prevent their CH running since December of 2011.  As of 15 April, 2016, 187 CHers have completed and submitted their surveys.  The following normal distribution curve illustrates their 25(OH)D serum concentrations before starting this protocol.

As you can see, over 80% of them were vitamin D3 insufficient/deficient with a mean value of 22.8 ng/mL and all had a 25(OH)D serum concentration < 47 ng/mL. I'm very confident most MS sufferers will fall into this same category unless they're taking supplemental vitamin D3.

Take care and please keep us posted.

V/R, Batch

LkufLye.jpg

 

Edited by Batch

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I've had cluster headaches since 1998, and in recent months I have started to present symptoms of MS. My left hand is paralyzed, and now it is in my right leg. I'm from the US, but I've lived in India on and off for the past 22 years. My symptoms are also indicative of Hansen's Disease, aka leprosy; my biopsy will be returned tomorrow. Three doctors that I see have told me leprosy will be the best diagnosis for me, as it is curable. Otherwise, it is some kind of neuropathy or MS, conditions that are much more grievous. In any event, the three doctors I see (two neurologists and a dermatologist) confirm coincidence of MS with cluster headache patients. The other reason I post this is because during this situation I have been disturbed by the lack of support groups for people with leprosy--whether I have the disease or not, I have not found any support online, and the internet is filled with misinformation about the disease. 

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Hey Tom,

I'd really suggest you see one of the Coimbra Protocol trained physicians at the following link:

https://www.google.com/maps/d/viewer?mid=1fATZJUEhOsYYJdBY41h48FBkLaQ&hl=en_US&ll=14.974129117547387%2C-42.780705499999954&z=2

In the mean time, starting the anti-inflammatory regimen is a great choice no matter the medical condition.  You can download a copy at the following VitaminDWiki link: 

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Take care and please keep us posted.

V/R, Batch

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On 6/12/2017 at 4:02 PM, Batch said:

 

There is sufficient evidence to say cluster headache (CH) is an autoimmune disorder just like MS. 

 

This is something I've heard people say as a suspicion but I've never been able to find any study investigating it.  Do you have any info on this?

 

-Ricardo

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Anecdotal: I've had multiple autoimmune disorders...CH was the first....MS was suspected by several neuros....lymphoma and numerous environmental/food allergies followed. Antihistamines were helpful during my early ch career. I can't prove or attest to a damn provable thing...sometimes ya just "know"...I await the studies to affirm......

Best

Jon

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That would work for some,  but not others... I have both cluster headaches advance multiple sclerosis, but my farther has cluster headaches but no other conditions..

I've also recently,  been blessed with my longest remission from cluster headaches,  that I've had since getting them. 

Mine have been once a year  (4 months or so long) every year,  and occasionally they skip a year.. I had the absolute worste bout last time.  They lasted about 6 months,  I had multiple clusters each day (normally only get 1-2 a day for 4 months).. They came on all night and day randomly,  they were lasting longer than normal, and they weren't actually going away at the end of  it,  they were leaving a shadow in the corner where I could feel it's existence,  but without the excruciating pain... After that round,  I have now skipped 2 years.. October will be 3 years..

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Currently, no. Since being cluster free for this long,  I have opted to cease ANY medications (except for OTC meds), out of pure fear of triggering the clusters to return.  To be clear,  I actually haven't taken any MS meds since prior to my last round of clusters.. I can note the differences that occurred in my last round of clusters,  to see if anything sticks out as a possible explanation. 

My round of clusters was MUCH worse than normal (longer period of time,  with more clusters per day,  etc) 

I took Sumatriptan injections more often than normal,  to the point that the inside of my mouth felt swollen,  like an allergic reaction would do. 

My doctor had me take a steroid pill (he sworeI was wrong about steroid injections helping,  but they really do for 1 day). I forget the name of the steroid he prescribed, but I can get back to you if you want to know. The steroid was SUPPOSED to reset my brain and maybe make them go away.  I altered the dosage taken and they were effective whileI was taking them,  but there were multiple times without.  And they made me gain a ton of weight.  After roughly 4 months of back and forth with these 2, I finally obtained oxygen.  I successfully aborted my last 2 or 3 clusters,  and they have not returned since then. 

Let me know if further details would help! 

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Currently, no. Since being cluster free for this long,  I have opted to cease ANY medications (except for OTC meds), out of pure fear of triggering the clusters to return.  To be clear,  I actually haven't taken any MS meds since prior to my last round of clusters.. I can note the differences that occurred in my last round of clusters,  to see if anything sticks out as a possible explanation. 

My round of clusters was MUCH worse than normal (longer period of time,  with more clusters per day,  etc) 

I took Sumatriptan injections more often than normal,  to the point that the inside of my mouth felt swollen,  like an allergic reaction would do. 

My doctor had me take a steroid pill (he sworeI was wrong about steroid injections helping,  but they really do for 1 day). I forget the name of the steroid he prescribed, but I can get back to you if you want to know. The steroid was SUPPOSED to reset my brain and maybe make them go away.  I altered the dosage taken and they were effective whileI was taking them,  but there were multiple times without.  And they made me gain a ton of weight.  After roughly 4 months of back and forth with these 2, I finally obtained oxygen.  I successfully aborted my last 2 or 3 clusters,  and they have not returned since then. 

Let me know if further details would help! 

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Hi All. I was the potential leper who chimed-in a short time back. I've spent the past 8 days in the hospital due to increased numbness and paralysis of my left arm and right leg. My new neurologist was incensed that two other doctors diagnosed my case as leprosy (Hansen's Disease), and he exclaimed that conduction blocks of the nerves do not happen in leprosy. To make a long story short, I went through a series of tests this past week, and I have been diagnosed with CIDP, and in particular a subtype known as Lewis-Sumner Syndrome. Although CIDP and MS are different, they are both demyelinating conditions; and perhaps this prompts further consideration of Mle's (the OP) query about cluster headaches and demyelinating auto-immune diseases. I'm not suggesting a connection, but I do want to make others aware that something such as CIDP exists, for whatever that is worth. Leprosy would have been a more interesting diagnosis while chatting at cocktail parties, but the bland abbreviation "CIDP" provides me a diagnosis and a somewhat navigable route for battle and recovery. 

Allow me to close by saying that I do not blame the two dermatologists for suggesting my condition was leprosy; I'm in India, and when patients in this country present these kind of symptoms, leprosy is always the first consideration. One doctor told me that we should be hopeful that it is leprosy, as it is completely curable--otherwise it is some form of polyneuropathy, meaning that we are in nebulous territory. Perhaps some of you identify with me in the sense that I always want to attach cluster headaches to other symptoms in life, and thereby knock them all out with a single stone; i want to be able to say CH is bundled and fully connected with everything else and in that manner find some superstitious panacea. I even stopped wearing red shirts for a while because on three occasions I had cluster headaches while wearing that color. I know that's irrational magical thinking, but cluster headaches aren't applauded for their ability to promote lucidity and reason. -Carl

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Haha! I know the feeling exactly!  I STILL refuse to drink Pepsi or eat fudge because one round of clusters started the night that I drank Pepsi for the first time in years and ate fudge for the first time in years.  All other things were normal routine that night... 

Unfortunately,  even completely omitting both from my diet ever since,  had no improvement of clusters (that was about 15 years ago). My recent recovery was in no way related. 

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