Verapamil always controlled somewhat til cycle went away and then I could go off of it until it returned. Last cycle has been longer, my beloved 14.5 year old dog died and I spent 4 months crying everyday. I know depression makes it worse. Neurologist put me on Prednisone for a month and I had NO attacks, but prednisone is down to one every other day and I feel shadows. I go back the 15th.  He discussed that sometimes this knocks it out for a while and if it doesn't, he could try lithium or depakote. I fear a new med. I know verapamil will work if I take enough, but it makes me so tired that I can't keep up, and I hate feeling that way. I am scared to try new meds. If he changes, do you think side effects will be worse than the verapamil?? Prednisone in the beginning tore up my stomach, and kept me up forever, but no attacks. Now it's almost over and I know it's not time to go med free. It was my understanding to stop verapamil towards end to see if they were gone. I have been able to be pain free for a year before without meds, but now it's different and I can't stand meds. How bad is lithium or depakote going to make me feel? I looked them up and I don't have bipolar or seizures , so I don't understand and I am scared to go to something new. I want advice before I go in on the 15th. Thank you.

You've said several times you're scared or afraid of either the meds or their side effects. You've also admitted to a prolonged depression. These emotions are able to cloud your ability to make reasoned and appropriate decisions. I'm not saying they are but they can. Having said that, none of us can say what you will feel, physically or emotionally, by starting a new med. I can say the meds your doc is suggesting are valid for CHs and can work, sometimes in combination with each other, to reduce or prevent CH episodes. Do you have a good and effective abort system like slamming an energy drink and huffing high flow O2? Or imitrex or migranal? A good abort can help by giving us confidence we can leash the beast. Talk with someone you trust and then trust their opinion and guidance. It will help sort out feelings from facts. God bless. lance

Diamond,

In May of 2012 you indicated you would ask your endocrinologist for the 25(OH)D vitamin D3 lab test...  What where the results?

Take care,

V/R, Batch

For well over 20 years lithium was my prevent med. We take it at doses far lower then for it's psychological uses, so don't be put off by the Hollywood stereotypes of mouth breathing zombies. At 900 mg a day it blocked 80-90% of my hits. After about 20 years of using it, its effectiveness went down, we increased the dose to 1200 mg a day. At that level it was blocking 60-70% of my hits. I completed a 30 year career in law enforcement while using the lithium as a prevent. If I didn't tell you I was taking it, you wouldn't know.

As far as side effects, you pee a LOT the first week or two, it's a salt  after all. The first time you go on it, you have to do 3-4 blood tests as you increase the dose to establish what your therapeutic dose is. You feel a little lethargy, nothing like I've heard about verapamil, and a cup of coffee is all it would take me to shake the lethargy. Definitely worth looking into.

All THAT being said..............the D-3 regimen has had me pain free for 3 years after over 30 years of episodic CH!

Joe

Thank you, Guiseppi, that's what I wanted to know. That someone had tried these meds without problems. There are alot of meds I can't take and don't want something too strong where you can't think clearly. I will ask dr. about the D3. After last cycle went away before this, I had forgotten about it.

Lithium slowed me way down (mentally and physically) and didn't help. Depakote made me loss chunks of hair that eventually grew back. It did not help either.

I4B

No attacks since finishing the Prednisone. Stopped verapamil on 8th, stopped prednisone on 11th. Neurologist today, said if they come back, start verapamil immediately. He didn't change my med. Call with problems and go back in 4 months. He gave me the order to bloodtest vitamin D. Lab was closed in their office and can get blood test in this next week. He said there was no scientific evidence that vitamin D can help in cluster headaches, but wouldn't hurt to test, because helpful for osteoporosis and a number of things.

Diamond,

PM me your neurologist's email address and I'll send the medical evidence...

You can also print out the section in the main post on the anti-inflammatory regimen and give that to him or just send him the following link. 

The key section starts with the title:

Basic and Complete Anti-inflammatory Regimen
Treatment Protocol and Dosing Guide

and it's located at the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take care,

V/R, Batch

D L, neuro said there was no scientific evidence that
vitamin D can help in CH's. Is that why we are pain free. [smiley=shocked.gif]

Hoppy.

Don't get mad at me, I'm just telling you what he said today. I was thinking that since we have cycles and can be pain free during different periods without D that he knew what he was talking about, but I was still willing to test and try it. I'm not saying it doesn't work.

He had no problem with the order for bloodwork. Was very nice about it. Said it's great for a lot of things. Just made that one statement about evidence.

D L,
No one is mad with you, far from it, i'ts just a comment we
make when we hear this sort of stuff from the medical
profession.With the D3 Regime you need to be on it all
the time to ward off those cycles.

Hoppy.

I have read over this tread, but I am kind of lost about D-3 ... I am still in my cycle and they have me on lithium, verapimil, and depakote. Plus just went into the hospital last night for a major dose of steriods to try to help ward them off for a while. Still trying to find an answer for this cycle since Verapmil has worked so effectively before and now it isn't along with the other ones. So can someone explain the D3 to me? I am guessing it has to do with vitamin D. I also am having awful side effect from the lithium and depakote so i would love to get off of them ASAP!

Hey Jodee,

As the guy who's been developing and using the anti-inflammatory regimen with 10,000 IU/day vitamin D3, 1000 mg/day Omega-3 Fish Oil and the vitamin D3 cofactors since Oct 2010 to prevent my cluster headaches...  I think I can give you a good explanation.

From the data collected to date from over 400 CH'ers here at CH.com and over 165 who responded to an online survey of anti-inflammatory users... the efficacy of this regimen to significantly reduce the frequency, severity and duration of cluster headaches is at least 80%... 70% experience a pain free response... and there have been no serious side effects reported that required medical attention.

This is a very healthy regimen of vitamins and minerals with many other health benefits making it something all should take.  If you're curious about that, just check out the following link at vitamindwiki:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE In particular, read through the column at the left on the home page titled "Health Problems and D"

The 10,000 IU/day vitamin D3 we take as part of this regimen may sound high... it's not. Vitamin D3, a.k.a. the sunshine vitamin, is made in the skin for free...  if exposed to the UV-B in mid day sun wearing a bathing suit without any sun block.  20 minutes exposure to sunlight under these conditions results in the skin generating up to 20,000 I/U of vitamin D3... your maintenance dose of vitamin D3 is only 10,000 IU/day.

If you're like nearly all of us... you don't run around in the mid-day sun clad in a bathing suit without any sun block... That means you are very likely vitamin D3 deficient.  The normal reference range for the 25(OH)D lab test is 30 to 100 ng/mL, (75 to 250 nmol/L). 

If you were a healthy Southern California Lifeguard, you would would average a 25(OH)D serum concentration of 110 ng/mL during the summer months.

One of the benefits of vitamin D3 is auto-regulation.  As the body generates vitamin D3, it is also capable of regulating it's production and metabolism.  This makes it very difficult to overdose on vitamin D3 or force your 25(OH)D serum concentrations too high into a toxic region.  It would required more than 50,000 IU/day vitamin D3 for several months to reach the lower threshold of vitamin D3 intoxication, ~ >200 ng/mL.  We shoot for a target 25(OH)D serum concentration range of 60 to 110 ng/mL in order to remain pain free from cluster headache as illustrated in the following chart:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The data collected to date suggest a clear causal relationship between cluster headache and a vitamin D3 deficiency.  CH'ers tested for 25(OH)D prior to starting the anti-inflammatory regimen with 10,000 IU/day vitamin D3, averaged a serum concentration of 26.5 ng/mL, (66.25 nmol/L).  CH'ers who experienced a favorable response to this regimen averaged a 25(OH)D serum concentration of 81.4 ng/mL, (203.5 nmol/L).

The following link contains a complete list of the supplements used in this regimen along with a "How To" guide in taking them.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Please feel free to ask questions.

Take care and please keep us posted.

V/R, Batch