strange changes to my clusters

[mark m]

I am on the D regiment yet this last week has been pure hell every cluster comes on fast and goes right to full pain in seconds, imitrex shot stopped one yesterday then it came right back 10 minutes later. I was at the ER when they gave me the imitrex then they gave me another shot of something else. since then I have been having shadows and I took my first Lithium with my last imitrex pill this morning at the onset of another cluster. If I was alone I would have taken my own life last night. I am not a quitter and would not leave my wife alone . Seems the vitamin d regiment and oxygen are useless at this point. I am at a total loss here. Appetite is almost none existent. 

[xxx]

Hey Mark,

Thank you for your Service and sorry you're having such a rough time.  I know what you're going through...  A CHer with Migraines makes you a special case.  Have the medical types at the VA ordered tests of your serum 25(OH)D, calcium and PTH?  If not, you need to ask for these lab tests.

What we've found over the last 8 years of CHers and migraineurs taking this regimen to prevent their headaches, is most chronic CHers and migraineurs need a higher vitamin D3 dose and higher resulting 25(OH)D response between 100 ng/mL and 150 ng/mL in order to bring their headaches under control.  25(OH)D concentrations this high cause most PCP/GP and neurologists to freak out saying you're pushing yourself into vitamin D3 toxicity.  That's a scare tactic...

I'm a chronic CHer and have maintained my serum 25(OH)D concentration between 120 ng/mL and 180 ng/mL over the last three years in order to remain CH pain free.  This has required average vitamin D3 maintenance doses between 20,000 IU/day and 40,000 IU/day.  My PCP has been OK with my 25(OH)D this high during my annual physicals as long as my serum calcium and PTH remain within their respective normal reference ranges... and they have.

We've also found that the Bio-Tech D3-50 water soluble 50,000 IU form of vitamin D3 is faster acting and more potent in terms of elevating serum 25(OH)D than the same dose of the oil based liquid softgel vitamin D3 formulations.

I doubt the VA has this brand and strength of vitamin D3 in their formulary so you'll need to order it from amazon.com or iherb.com.

If you haven't already done so, restart the Vitamin B 100 Complex.  Doing this has helped a number of CHers and Migraineurs.

A number of CHers and migraineurs with problems like yours have found taking a first-generation anti-histamine like Benadryl (Diphenhydramine HCL) for a week to 10 days at 25 mg every 4 hours and at bed time helped them kick start the vitamin D3 regimen.

What other Rx pharmaceuticals have doctors at the VA prescribed for you besides the CH/MH prophylactics?

Most migraineurs find they need a few other supplements in addition to the anti-inflammatory regimen at higher vitamin D3 doses to control their migraine headache (MH).  These additional supplements include:

300 to 900 mg/day CoQ10

1000 to 2000 mg/day Turmeric (Curcumin)

4000 mg/day Liposomal Vitamin C

Probiotic with a high colony forming count containing a variety of Lactobacillus acidophilus, Lactobacillus plantarum, Bifidobacterium bifidum, and Streptococcus thermophilus.  Take as directed on the back label until the bottle is empty.

• 300 to 600 mg/day Alpha-Lipoic Acid (ALA)

• 500 mg/day Resveritrol

• 500 mg/day Quercetin

• 3 to 6 grams/day L-Lysine with the liposomal vitamin C

I know this sounds like a lot of supplements to take on top of the anti-inflammatory regimen, but they don't all need to be taken at the same time.  For example, a 20 to 30 day course of probiotic is only needed to start this regimen and following any prescribed course of antibiotic.  This helps colonize or re-colonize the friendly bacteria in the GI tract called the microbiome. 

A number of studies have found the microbiome plays an important role in a healthy immune system.  Efficacy data indicate it's best to start this regimen with CoQ10, liposomal vitamin D3 and turmeric (curcumin) and to continue taking them daily.  The ALA, Resveritrol, Quercetin and L-Lysine need only be added if there's still no favorable change in migraine frequency.

The Atkins or ketogentic diets are also proving to be very helpful in controlling both CH and MH.  You start these diets with a 24 hour fast drinking only water (and taking the anti-inflammatory regimen).  This fast burns off the blood starch (Glycogen) stored in the liver.

When done with the fast, it's zero sugars and that includes commercial fruit juices and soda pop.  Zero wheat products including bread, pasta, cereal, cookies, crackers and pizza...  Limit foods high in starchy carbohydrates like potatoes and bananas to a small handful a day.  Stay away from grain oils like Canola and Mazola/corn oil... They're usually made with genetically modified grains high in Glyphosate, the herbicide in Roundup. 

Good oils include organic butter, olive oil, avocado oil and my favorite, extra virgin coconut oil.  You can eat all the free range organic meats, poultry and eggs you want.  A serving or two a week of wild caught fish is great.  You can also eat all the organic NON GMO green and colored veggies you want. Limit fresh fruits to a handful a day of dark berries like blackberries, blueberries, raspberries and dark grapes.  Organic almonds make a great between meals snack.  Be sure to drink at least 2.5 liters of water a day.  Having your wife join you on this diet makes it a lot easier...

Getting back to lab tests for 25(OH)D, calcium and PTH at the VA...  If you tell them you're taking 50,000 IU/day vitamin D3 to control your CH and MH and that you want to ensure you've not pushed yourself into hypervitaminosis-D, they're required to order the 25(OH)D and calcium lab tests.

Take care and please keep us posted.

V/R, Batch

Edited March 25, 2019 by Batch

[mark m]

The lithium 300 mg 1 daily took away 95% of the clusters for about 8 days and then  started getting a lot of shadows and now I am back to full pain and my clusters do not react to Oxygen at all and a shot of imitrex does nothing so I was in the ER last night and they gave me a combo of imitrex, dilaudid, zofran & benadryl with saline. I was there for 4 hours and when I left I still had pain in my face. Here it is Sunday I woke up with pain in my face and within 2 hours was at pain level 4 and I put ice on my face while breathing oxygen and it slowly got better.  I requested to have the blood tests and have heard nothing yet. I am switching to a different VA hospital asap as I am very unhappy with the Sacramento Mather VA.

[CHfather]

mark, I wish I had something valuable to add, but just a few thoughts after having read this thread:

1. Your oxygen seems to be varying it its effectiveness. A weird thing that some people have found is that when the O2 in a tank gets low, using O2 is less effective. "Low" can mean a third of a tank left, or even more than that in some cases. If you have a full tank, I'd consider switching to that one.  Also, are you downing some caffeine as you get on the O2 -- for example, an "energy shot" such as Five-Hour Energy, or you could even try straight strong coffee.  You mentioned going up to 15 lpm -- at that flow rate, is the bag always full when you want to inhale, or are you having to wait, or to breathe more shallowly, and therefore less effectively, than you could/should be?  If so, you want to get a higher-flow regulator.  

2. Same variability of effectiveness seems to be true of your Imitrex injections.  I'm a little confused because you talk in one recent post about Imitrex pills. You also mention that you ran out of trex.  Most people with CH can split their trex injections and still have them be effective. Given your mixed success, I can't say if this would work for you, but the info is here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

3. If O2 and trex are generally not fully effective and high-dose verapamil didn't work, it's possible that you might have a CH "lookalike" condition, such as paroxysmal hemicrania.  That condition responds to a medicine called indomethacin but is generally not responsive to CH treatments.  There are some other headaches for which people have reported some CH-like symptoms (cervicogenic headaches, for example), and I did read once that there are some traumatic-brain-injury related headaches the look like CH but are not.

4. Batch made some suggestions that you would want to consider: the ketogenic diet; Benadryl 25mg every four hours and at bedtime; and restarting the Vitamin B 100 complex.  Those all seem worth trying.  Batch is also big on drinking 2.5 liters of water every day. If Batch says it, I think it's worth trying. 

[mark m]

I have tried verapamil but the doctor took me off it before trying a higher dose, No clue why. The only time imitrex has not worked is when I had none at home and the pain got to suicide level by the time I got to the ER and they gave me a dose but I have no clue how much they gave me. Up until a few years ago my clusters were every 3 years but last summer I flew to Boston then to Texas then back to California and the flying caused a short attack that lasted 6 weeks. Now i am in my regular cluster time except they usually laster 12 weeks and I am into the 14th week. I have no idea why they are so bad this time or why I am having pain in places I never had pain in the past such as in my neck and in the roof of my mouth. I will drink more water and get some B complex as you suggested. Thanks, Mark

PS and benadryl.

[mark m]

my recent test results : serum 25-oh-d results >120.0 H PSA>are normal    Not sure what this means?

[xxx]

Hey Mark,

Any 25(OH)D serum concentration above 100 ng/mL will be assessed as "High".  Please don't let that bother you.  The technoids (not real vitamin D3 experts) who set the upper limit for the 25(OH)D normal reference range knew that 200 ng/mL was likely safe, but where a few people start experiencing hypercalcemia (too much serum calcium) so they wanted to be uber safe and conservative so set the upper limit at 100 ng/mL.  If you're still getting hit with CH with your 25(OH)D at 120 ng/mL, you may need a higher vitamin D3 dose and a 25(OH)D serum concentration up around 140 ng/mL to achieve a favorable response.

For reference, over the last three years I've kept my 25(OH)D serum concentration between 130 ng/mL and 188 ng/mL taking between 20,000 IU/day and 40,000 IU/day vitamin D3 to stay CH pain free depending on the pollen and mold spore count.  My PCP has no problem with my 25(OH)D serum concentration this high as long as my serum calcium concentration remains within its normal reference range...  and it has.  Be sure to ask for serum calcium and PTH when you go back in for lab tests at the next VA facility.

Take care and please keep us posted.

V/R, Batch.