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Remission Over

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I just stumbled upon this website in search for some sort of cure for my headaches. I just had to take many weeks off work to deal with a cluster after 2 year remission.

I had my first headaches very young, around 14. At the time it was pretty much just "eat some Tylenol" situation. They slowed down in my early 20's. I think I know why now but it would have been nice to know during the intense regions of the pain. Relationships and friends lost over crushing my face into pillows and floundering around; I wouldn't have wanted to be around me, not surprised in the least I became a misfit.

CH was diagnosis and it was pretty obvious, unilateral left side, unreasonably painful, to the point that I'm not even sure I can feel physical pain like I should be able to since the 6+ years of chronic headaches. I had hope that after a couple years of remission some miracle cure had come out and seeing an ER would fix me during this new bout. It looks like the same landscape as it was before. I know what makes them go away, I wish everyone did and it was accessible. Oxygen doesn't seem to work for me; I have huge lungs - different story but they are gigantic. Maybe if I increased the flow it could help. Calcium channel blockers did nothing, triptans do very little other than side effects and weird injection site pain.

Anyway, just introducing myself. Looking for a new neurologist in Boston area that specializes in headaches, specifically CH. I am sick of being grouped in with "migraine sufferers". I am sure that is terrible but they are clearly wholly different in their origins and mitigation.

Hope everyone is doing alright, stay strong etc.

 

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Hey Blue X 3,

Welcome to Clusterbusters.  We know what you've been going through and the good news is it doesn't need to be that way. You've got two effective options...  Busting and Vitamin D3.  The busting experts will be along shortly so I'll cover the vitamin D as you're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH. 

Download the anti-inflammatory CH preventative treatment protocol from the following VitaminDWiki link and take it to your PCP.  When you get there, discuss starting this regimen and ask for the lab test of your serum 25(OH)D.

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

 

This is not a joke and I don't sell anything.  I've been providing information outreach to migraineurs and CHers on the benefits of this regimen and vitamin D3 since December of 2010.  If you've any doubts about starting this regimen, click on the following VitaminDwiki link.  It will take you to a page at that site that's all about my work with CHers taking this regimen with vitamin D3 and the cofactors.

http://is.gd/clustervitd

If you’re still in doubt about starting this regimen, please read through the following posts by other CHers who started this regimen.  I have hundreds more just like them.

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/798/#798

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1393027277/2/#2

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1425/#1425

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1465/#1465

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404/278/#278

Please feel free to ask questions... Most CHers have them when starting this regimen...  I'm here to help. 

Take care and please keep us posted,

V/R, Batch

 

Edited by Batch

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Welcome to the community blue...sorry ya need to be here!

You have a most excellent neurologist in Boston who is also a longtime member here in Dr Brian McGeeney!! He has been attending our annual clusterbusters patient conference for several years and is a really great guy! Let his office know you're a clusterhead and I'm sure he'll work you in asap!!

Dallas Denny 

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blue,

Follow the advice of Batch and Denny and it'll get you going in a very good direction.

I remember at a conference some years ago a small woman, maybe 5 feet tall, maybe 100 pounds, who could use O2 faster than a 60 lpm setup could provide it.  (Her screen name, for those who go way back, was Tingeling, which means Tinkerbell in Norwegian.)  I think Batch's method should work for you, because it's not dependent on flow rates (see this post), and I would think a demand valve would also work.  MrGeeney will know, I'm sure -- and just as important, he's likely to care about making sure you get what you need.

 

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Wow, thanks for the suggestions. I will be looking into these and will definitely be contacting the doctor suggested; my PCP is getting me a referral to Boston Medical Center so I wonder if he is the person that she found. Normally my doctor does not refer out of her area but I stressed the importance of the cluster headache diagnosis. I had just spent ~3 weeks at a number of hospitals with literally no solution other than IV/Oral Ativan, sumitriptan injector script, no focus on CH at all, in fact I was largely ignored while being treated at one of the larger/famous hospitals in the Boston area. 

The need for a specialist is obvious so hopefully I will be lucky enough that the doctor and I cross paths in the near future. I am lucky enough to have enjoyed a few years CH free - I still get the 3 am wake up every morning right now in this cycle but no headache attached at the moment.

I have had a lot of blood drawn in the last month - is it possible that 25(OH)D testing would be in any of that blood work? I probably had 15 blood draws over the course of the 3 weeks.

 

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Hi blueblueblue,

So how is the migraine coming along? - only kidding! Sorry to hear of your troubles and welcome to the group. There is an extremely active closed discussion group on a certain other social media platform that you will be told about, featuring many of the Clusterbusters group members. You need to attend the annual Clusterbusters meeting in Denver, middle of Sept 2018.

I am happy to facilitate an early office visit on your request-if you are interested message me with your contact info, I have not been on here in a while but will keep an eye out now.

Regards,

Brian E McGeeney, MD, MPH, MBA

Neurology Dept, Boston University School of Medicine and Boston Medical Center. 

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2 hours ago, blueblueblue said:

I have had a lot of blood drawn in the last month - is it possible that 25(OH)D testing would be in any of that blood work?

Vitamin D level is usually included in standard blood panel.

If you're going to use those sumatriptan injectors, be sure to read the file "Extending Imitrex" in the ClusterBuster Files section (it's on the second page, I think).  Virtually everyone can get by with less than 6 mg.  For some, 2mg is sufficient; 3 works for pretty much everyone.

The Facebook group that the doctor mentions is "Cluster headaches."  I'm giving you the specific name because there are other CH groups at FB that are suspect to some of us.

Edited by CHfather

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Understood - the injection they gave me is 6mg so maybe too much. I am trying to avoid use if possible, very disruptive. 

17 minutes ago, CHfather said:

Vitamin D level is usually included in standard blood panel.

If you're going to use those sumatriptan injectors, be sure to read the file "Extending Imitrex" in the ClusterBuster Files section (it's on the second page, I think).  Virtually everyone can get by with less than 6 mg.  For some, 2mg is sufficient; 3 works for pretty much everyone.

The Facebook group that the doctor mentions is "Cluster headaches."  I'm giving you the specific name because there are other CH groups at FB that are suspect to some of us.

 

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1 hour ago, CHfather said:

Vitamin D level is usually included in standard blood panel.

If you're going to use those sumatriptan injectors, be sure to read the file "Extending Imitrex" in the ClusterBuster Files section (it's on the second page, I think).  Virtually everyone can get by with less than 6 mg.  For some, 2mg is sufficient; 3 works for pretty much everyone.

The Facebook group that the doctor mentions is "Cluster headaches."  I'm giving you the specific name because there are other CH groups at FB that are suspect to some of us.

Thank you for offering the name of the other FB group!  My Dad has been a cluster sufferer for years with very little relief...  I've told him about this group, as well.  Again, thank you!

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