FAO Batch… Vit D help needed please

[Dawn French]

Hi Pete & co,

I have been recommended by Craig Stewart to ask Batch for advice here. My story is I started CH in the spring of 2021, four attacks per day over three months, I was 59 years old. Fortunately got to see a neurologist quite quickly who diagnosed me and got me on sumatriptan nasal shots, later followed by oxygen. Remained pf the rest of the year and started the Vit d regimen in February 2022, all was great I missed potentially the spring cycle but October I started to get a few shadows so after getting advice I upped the Vit d until I was at 50k. I had a 7 hour flight for a holiday and on landing the beast struck hard! I upped the Vit d to 100k and it tailed off to one attack over night. I experimented with increases plus the extra co factors inc turmeric etc and over the course of my holiday I was having pf days but some nights I was having attacks. By the time I got home, after two attacks on the plane home I was taking 250k, I then had one last push to 300k in a last ditch attempt but to no avail, clear all day but two attacks overnight without fail. I then decided to stop the Vit d as obviously I was aware it could cause problems. I got my bloods done which I’ve attached, my GP was a tad shocked but after I explained what I was doing she fully understood why! So my plea here is, what did I do wrong or is it that it just doesn’t work for me. I’ve been so good for 18 months and really thought the Vit d was keeping me in a great place, any help you can give me I would really appreciate, thank you 

[kat_92]

@Dawn French hello. I hope batch sees this soon. But as far as I can tell the d3 is a life savor, but any potential trigger (such as air travel) can make all your preventatives void. Also too much d3 won’t do much good if you don’t have enough corresponding magnesium. It could also be that the sumatriptan made it a little worse? It has been known to make rebound headaches a lot stronger. I use verapamil along with my d3 yearly. What other medications are you on?? 

[CHfather]

@xxx  (Please see above)

(xxx is Batch's handle here.)

[Dawn French]

Kat-92 thanks for your thoughts, the only medication I’m on is an antihistamine twice a day. I think the flights ruined my progress maybe I should have done another loading dose?

[Shaun brearley]

Hi @Dawn Frenchjust out of interest how often are you using the triptan nasal spray, do you use them for every attack to abort  ? 

[Dawn French]

Hi Shaun, to begin with when I upped my vit d I wasn’t using sumatriptan but after the flight I had to because the pain was intense. Once I got home after another flight I had to use the sumatriptan plus the oxygen. Thanks for replying 

[Shaun brearley]

Good so only using triptan when really needed , as it will bring on rebound attacks and prolong your cycle . Don't get me wrong they saved my life a few times but also made my cycles last a lot longer 

[Shaun brearley]

@Dawn FrenchHave you tried an energy shot b4 hitting the 02 as it really helps , and what's your o2 set up . Non rebreathable mask 15 lpm flow rate minimum 

[Dawn French]

Thanks Shaun, I didn’t realise that!

[kat_92]

@Dawn French any time I feel shadows coming I up my d3. But that also means upping magnesium, don’t forget! Yeah, flying may have put a kink in your progress. That’s okay, you’ll get back on track soon 

[Dawn French]

@kat_92Got it thank you! ❤️

[Dawn French]

@Shaun brearleyYes I used Red Bull on holiday as I had no oxygen, I was desperate to try anything! My O2 set up is set to 15 with non rebreathable mask and that’s a god save!

[xxx]

Dawn,

Thank you for the post.  I was on travel all day yesterday and have had problems getting my laptop back on line until a few minutes ago.. 

You've done nothing wrong and have followed the protocol correctly.  You've loaded vitamin D3 aggressively, experienced a favorable drop in CH frequency, (just not the complete cessation of your CH that you and I wanted), you've seem your GP, obtained the assays for serum 25(OH)D3, calcium and PTH and stopped taking vitamin D3.  These were all correct actions. It's the followup course of action that's important now.

Stay off the vitamin D3 for 10 days to two weeks then see your GP for another set of assays for your serum 25(OH)D3, calcium and PTH.  Be sure to ask your GP for the high sensitive C-Reactive Protein (hs-CRP) assay.  It's likely you've inflammation and/or an immune system response to allergens cooking away. Either of these conditions make it difficult for vitamin D3 to do its thing preventing your CH.  If your hs-CRP is elevated, you and your GP need to look for the cause.  Be sure to drink 2.5 liters of water in the 24 hours prior to the blood draw for these labs.

In the meantime, you need to drink 2.5 liters of water a day and avoid calcium rich foods like all dairy products and any calcium supplements. 

I would take as many of the Antihistamine Full Monty supplements you can get.  They're listed in the email I sent you.  If you can't find all of them, ask your GP for an Rx for a first-generation antihistamine like Diphenhydramine HCL and take as directed.   I would also ask for an Rx for oxygen as a CH abortive at 15 liters/minute if you've not already done so.

As an immune system response to allergens in your environment or diet is likely, starting the Atkins-Ketogenic diet is a good idea.  Start it with a 24-hr fast drinking 2.5 liters of water a day and taking all the supplements less the vitamin D3 daily.  The fast will burn through the glycogen (blood starch) stored in the liver and this will help push you into mild ketosis.  Our bodies metabolize ketones just fine.  Exercise is also important.  I'm 78 and have found 10 minutes fast walking makes a big difference.

CH attacks during airline travel is an interesting phenomenon experienced by most CHers.  Airliner cabins are pressurized to an altitude of 7,000 to 8,000 feet while the jet is flying at 30,000 to 37,000 feet. This results in a drop in alveolar oxygen of up to 7%. As the CH syndrome is sensitive to variations in oxygen, a drop of 5% to 7% is sufficient to trigger CH.

Bottom line, you're on the right track. Following the course of action above will bring your serum calcium back into its normal reference range and when that happens, your parathyroids will respond with more PTH and that will bring it back into its normal reference range.  The hard part is getting inflammation and allergic reactions under control.  Once you've done that, you've sufficient vitamin D3 and 25(OH)D3 in your system to help prevent your CH.  Once your serum calcium and PTH are back in their respective normal reference ranges, you can resume vitamin D3 at a maintenance dose of 50,000 to 100,000 IU/week.

Take care, hang in there and please keep us posted. 

V/R, Batch

 

 

 

[Dawn French]

@xxx, thank you so much for responding, I will do what I need to do to keep the doctor happy and press on with the regimen once my bloods have been done after Xmas. I’m on day four of the prednisone taper and feeling much better but I would rather control my CH with the supplements not steroids. I’ll let you know my progress and Happy Christmas to you and your family.

[xxx]

Dawn,

It's good to hear the prednisone taper is helping.  It is also a good diagnostic indicating inflammation.

Take care and have a Very Merry Christmas and a Happy CH pain free New Year.

V/R, Batch