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New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › Day 97......

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Day 97...... (Read 2407 times)

Mike Bernardo

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Chesterfield, NJ
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Day 97......
Mar 6^th, 2012 at 12:14pm

Dear Diary.........

Today the visit went well. I'm starting on Depakote, and luckily we decided NOT to try lithium. I'm getting an MRI of the brain and MRA of the neck and COW to check that pesky torturous vein in my brainstem. Also to see what else is going on down there. As I was about to leave, I did actually man up and mentioned something to the doc which may make a difference. For the last month or so, maybe longer, while I'm not depressed or anything (even though I probably have a right to be), I cry like a little baby over everything. I've never been a crier (or is it cryer). I see a commercial, a movie, hear a song. The other day, I was up at 5AM, making coffee, and I started, no reason. And I'm not even sad. He looked at me and said, "I think we need to check your testosterone levels to see if that's keeping you in cycle so long......" So, we have an add-on to the game plan. To think, I wasn't going to mention it for fear of sounding like a little wimp. Man up, guys.

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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: Day 97...... Reply #1 - Mar 6^th, 2012 at 5:56pm Testosterone therapy has helped a lot of people Mike, here's hoping you're one of them. Joe
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Batch

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Control The Beast With
O2 & D3 You Must

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Bremerton, WA
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Re: Day 97......
Reply #2 - Mar 8^th, 2012 at 12:47am

Hey Mike,

When you get tired of "dopeycoat"... and you will... at your next appointment ask for an Rx for home oxygen therapy as an abortive. It's the most effective and least expensive abortive available to CHe'rs and it has no side effects...

I've gone over all your posts and there's no mention of oxygen therapy.

While you're there, as for a lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D. This is a metabolite of vitamin D3 and I suspect your results will come back indicating you are vitamin D3 deficient.

The normal reference range for 25(OH)D is 30-100 ng/mL... Less than 30 ng/mL and you're deficient. Having said that, we've see lab results come back as high as 42 ng/mL from CH'ers with active CH.

Moreover, CH'ers who have taken this test after going pain free or experiencing a significant (>60%) reduction in the frequency and severity of their CH after starting the anti-inflammatory regimen with 10,000 IU/day, have all reported 25(OH)D concentrations ≥ 60 ng/mL... some as high as 120 ng/mL...

Take care and please keep us posted.

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Mike Bernardo

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Chesterfield, NJ
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Re: Day 97......
Reply #3 - Mar 8^th, 2012 at 9:30am

Hey, Batch thanks for the post. I do use O2. Not very often, as it works, but not well. I actually get just as beneficial an abortive effect from running or cycling as I do from sucking on an O2 tank with non-rebreather mask (thanks to you guys on this site). I do use it occasionally for bad bouts or if it's late at night and can't hit the road for a run, then I do a sumavel shot with Cambia, take my 15mg melatonin and hit the sack.

I do get my bloodwork done regularly and test my D3 due to taking Topamax. It's normal, and I also take D vitamin on my doc's suggestion since I'm taking Topamax. As an update, I'm down to 100mg, on my taper, as I'm switching to Depakote this weekend. I'll be off Topamax by week after next. I'm getting my MRI and MRA on Tuesday to check my head and neck out, as I also have a tortuous vessel in my brain stem, and they want to look for changes since I've had 3 concussions in my life. I'm on day 99 now, wishing I get some luck on day 100 and this thing ends. Maybe I'll get lucky like the doc says and it will simply be that I have low T. Though I'm afraid of what that could be from since I'm only 41, and I've had a couple trips to the Urologist for issues with the nether regions that I blamed on too much bike riding.

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Batch

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Control The Beast With
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Bremerton, WA
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Re: Day 97......
Reply #4 - Mar 8^th, 2012 at 5:51pm

Hey Mike,

Thanks for the update... and that leads me to a few more questions... What oxygen flow rate? We all need a minimum of 25 liters/minute... higher is even better like 40 liters/minute in order to hyperventilate.

During your runs, you're likely ventilating your lungs at close to 50 liters/minute and that blows off CO2 even faster... It's not the extra oxygen you get while running but rather that you're blowing off CO2 more effectively due to the physical activity that helps abort your CH faster than the oxygen...

The second question is what was the actual 25(OH)D concentration? There are still some labs here in the US that use the older lower reference range of 20-70 ng/mL, (50-175 nmol/L). For them any 25(OH)D concentration >20 ng/mL, (50 nmol/L) is normal... albeit only normal for rickets...

CH'ers with active CH have tested as high as 42 ng/mL 25(OH)D. Moreover, CH'ers who have gone pain free on the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and had this test have all come back with 25(OH)D levels ≥60 ng/mL....

And that brings me to the last question... How much vitamin D3 are you taking each day?

Take care and please keep us posted.

V/R, Batch

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Mike Bernardo

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Chesterfield, NJ
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Re: Day 97......
Reply #5 - Mar 9^th, 2012 at 8:07am

In order:

I am using 15 Liters, which probably explains why I like running better than the O2 tank, though the tank irritates me anyway, as I've been in the ER 2x in the last year with unstoppable nosebleeds, which is an issue I've had since I was a kid.

I just checked my labs (I keep them scanned on my PC), and my 25-OH Total is 33, D3 is 33, and D2 is <4.

I can't answer the last question until I get home and look at the bottle. I only keep the pill in a pill box to take in the AM and another at night, but it's a horse pill, that's for sure.

So, it sounds like 10,000 IU/day is what I should be taking, based on common thought? (I know you're not a doc and this is not medical advice, and I will make my own decisions).

Thanks for the fast follow-up.

Mike

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Batch

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Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: Day 97......
Reply #6 - Mar 10^th, 2012 at 2:10pm

Hey Mike,

I wouldn't worry about vitamin D2 levels... It's the vitamin D3 you need to prevent CH... and 10,000 IU/day is a safe therapeutic dose for most CH'ers... Most of them experience a favorable response before their next lab test at the 30 day mark. Shoot for a 25(OH)D serum concentration in the 60-90 ng/mL range and you should be good to go... PF that is...

Take care and please keep us posted.

V/R, Batch

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Mike Bernardo CH.com Veteran Offline I Love CH.com! Posts: 231 Chesterfield, NJ Gender:	Re: Day 97...... Reply #7 - Mar 14^th, 2012 at 10:56am MRI and MRA clear, still waiting on the blood tests. The MRA still shows the tortuous blood vessel on the cervix, same side as my HA, but no changes in the last 2 years. Also, I just ordered my 5,000IU Vitamin D3. Going to give that a try, as well, even if the blood comes back showing Low T.
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