My vit d blood test

[Emmalou]

I had my vit d checked recently and I want to start the vit d regime but my serum is already 86nmol/l. Isn’t that the desired level anyway? I’ve taken vit d supplements of 4000iu for quite a few months along with some general multi vitamins and I started taking them just before I started getting cluster headaches. Does this mean the vitamin d regime won’t work for me as my serum is already where it needs to be? 
I posted the last couple of days as a new poster explaining about my situation. I’m currently on amatriptalyn which is keeping the pain bearable but I’m still getting the headaches and it’s been going on daily for the last 3 months now. 
I feel rather deflated now that I’m probably going to have to try the verapamil and I really didn’t want to try it. 
I think I need to have a good cry!!! 

[CHfather]

You can stop despairing, Emmalou.    The target nmol/L is around 200. In some places, including the US, it's measured in ng/mL, and with that measurement, the target is around 80.  At 86 nmol/L, you are right about where most people start.

[xxx]

Hey Emmalou,

CHfather is spot on saying your 25(OH)D3 serum concentration target is a therapeutic range between 200 nmol/L and 250 nmol/L so the anti-inflammatory regimen is definitely for you as your serum 25(OH)D3 concentration at 86 nmol/L (34.4 ng/mL) is still too low.  The following photo illustrates the supplements by brand and dose I take and suggest to other CHers as we've found they have the best response in preventing CHIf you live outside the US you can order most of these supplements through iherb.com when you're ready to reorder.  If you live in the US, you can order all of them from amazon.com.  If you haven't already done so, you can download a PDF copy of the anti-inflammatory regimen CH preventative treatment protocol at the following VitaminDWiki link:

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

The best course of action is to start loading vitamin D3 at 50,000 IU/day for at least 10 to 12 days or until you've experienced 24 hours CH pain free, whichever occurs first.  At that point you can reduce your vitamin D3 intake to 10,000 IU/day as an initial maintenance dose.  The Bio-Tech D3-50 is important. We've found this 50,000 IU water soluble form of vitamin D3 is faster acting with a higher bioequivalence than the oil-based liquid softgel vitamin D3 formulations in elevating serum 25(OH)D3.  I'd suggest ordering it now and take one a day as your loading dose when it arrives. You'll only need one (1) of the D3-50 vitamin D3 capsules a week as your maintenance dose.

Be sure to double the magnesium to 800 mg/day split AM/PM with meals while loading.  Take all the remaining supplements 10 minutes after eating the largest meal of the day.  Stomach acid will be highest at that point to digest the food you've eaten and that helps dissolve the supplements.  Be sure to drink at least 2.5 liters of water a day.

When you've completed the loading schedule and been on a vitamin D3 maintenance dose of 10,000 IU/day for 30 days, be sure to see your PCP/GP for lab tests of your serum 25(OH)D3, calcium and PTH.  As long as your serum calcium remains within its normal reference range, even if it's at the top of this reference range and not over, there's no hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity so your actual 25(OH)D3 serum concentration doesn't really matter except as a reference  for being CH pain free.  When you have the lab results in hand, please find the time to take the online survey of CHers taking this regimen to prevent their CH.  To start this survey, click on the following link:
http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6

I'm not a fan of Amitriptyline primarily due to the fact that tricyclic antidepressants tend to have too many adverse side effects.  It's up to you, but I would ditch the Amitriptyline and start a week to 10 day course of a first-generation antihistamine like Benadryl (Diphenhydramine HCL).  I would do this anyway if you haven't responded to the loading dose by day 5.   Ask your PCP/GP about starting the first-generation antihistamine as depending where you live, Diphenhydramine may not be available, but there are other first-generation antihistamines.

Take care and please keep us posted.

V/R, Batch

 

[Emmalou]

Thank you both so much!! I’ve already read and reread your treatment protocol a good few times to try and get my head around it all. I live in the UK but I will go iherb and get it all ordered. Thank you so much for your explanation Batch. I’m getting on well with the amatriptalyn, only on quite a low dose of 20mg per day and the side affects are pretty minimal compared to the pain I was getting from the headaches before I started, so I was planning on sticking with the amatriptalyn for a while until I get the right serum level and get myself off of it. I work a lot at the moment due to the industry I’m in and I just can’t deal with the pain of the headaches whilst I’m so busy with work but I do want to get off them as soon as I can. I will get started ASAP and honestly just thank you both so much again!!! 

[EyecePick]

On 12/13/2019 at 10:06 AM, Emmalou said:

I had my vit d checked recently and I want to start the vit d regime but my serum is already 86nmol/l. Isn’t that the desired level anyway? I’ve taken vit d supplements of 4000iu for quite a few months along with some general multi vitamins and I started taking them just before I started getting cluster headaches. Does this mean the vitamin d regime won’t work for me as my serum is already where it needs to be? 
I posted the last couple of days as a new poster explaining about my situation. I’m currently on amatriptalyn which is keeping the pain bearable but I’m still getting the headaches and it’s been going on daily for the last 3 months now. 
I feel rather deflated now that I’m probably going to have to try the verapamil and I really didn’t want to try it. 
I think I need to have a good cry!!! 

Emmalou, I feel your despair! Some days I just lose it emotionally... its very difficult to comprehend how something so PAINFUL is not malignant or "harmful" to my health besides my mental state. This is one of the most painful conditions known in medicine... but somehow I feel people just don't understand how bad and debilitating this pain is! Especially because I maintain a full time career as an trauma nurse.. and sometimes I just have to work through the pain with my eye crying and my face flushed... but someone else's life is on the line-- so people don't believe I battle with this 10/10 pain. My poor boyfriend ( a very knowledgable physician, ironically) has watched me suffer and cry all year ! sometimes we just need the release... I've made appointments with a psychologist, psychiatrist, and pain management. Other chronic illnesses are approached with a multi-faceted approach so why should this be any different?! 

Please update us as you go along.. I have a neuro appt today with one of the neurologist's on the list (this will be our fourth appt together this year).. and I'm going to bring this up to him! 

[Emmalou]

Hi Eyecepick. This is my first ever bout of cluster headaches and I can honestly say I’m SO grateful that amatriptalyn has given me some relief, i am still 100% getting the headaches but the pain is a million times better on them. When I first started getting them 3 months ago I ended up taking a few days off here and there as I just couldn’t cope at work. How long have you suffered? Have you found anything that helps you? How long have you suffered? I hope you don’t mind me asking but it helps being able to relate to people in a way. Mine suddenly just started after I relaxed from a really shitty period in my life over the summer and I understand that stress can kick off CHs happening. I haven’t had a full 24 hours proper relief for what will be exactly 3 months very soon, although as I say the amatriptalyn makes it a lot more bearable. I will be trying the vit d regime soon, I’m just waiting for delivery of the vitamins. I’m in the uk so have used iherb as suggested above but I believe the items still come from America so I assume I’ll be waiting a little while. My mum suffers with pain from her bones deteriorating from a medication she used in the past and she has the multi faceted appropriate and I completely agree so should we as it has such an impact on mental health. Before I got the relief with the amatriptalyn I remember crying on the phone to the doctor once begging for something to help as I couldn’t imagine living my life like this. I have a little girl so I would never do anything like that but in the moment of excruciating pain that’s all you can think of. I completely agree that people just don’t understand but how could they when it’s not really visible unfortunately. Good luck with your appointment, I hope it goes well! 

[Emmalou]

I hope so @Brain on fire, thank you for your comment :)! 

[EyecePick]

16 hours ago, Emmalou said:

Hi Eyecepick. This is my first ever bout of cluster headaches and I can honestly say I’m SO grateful that amatriptalyn has given me some relief, i am still 100% getting the headaches but the pain is a million times better on them. When I first started getting them 3 months ago I ended up taking a few days off here and there as I just couldn’t cope at work. How long have you suffered? Have you found anything that helps you? How long have you suffered? I hope you don’t mind me asking but it helps being able to relate to people in a way. Mine suddenly just started after I relaxed from a really shitty period in my life over the summer and I understand that stress can kick off CHs happening. I haven’t had a full 24 hours proper relief for what will be exactly 3 months very soon, although as I say the amatriptalyn makes it a lot more bearable. I will be trying the vit d regime soon, I’m just waiting for delivery of the vitamins. I’m in the uk so have used iherb as suggested above but I believe the items still come from America so I assume I’ll be waiting a little while. My mum suffers with pain from her bones deteriorating from a medication she used in the past and she has the multi faceted appropriate and I completely agree so should we as it has such an impact on mental health. Before I got the relief with the amatriptalyn I remember crying on the phone to the doctor once begging for something to help as I couldn’t imagine living my life like this. I have a little girl so I would never do anything like that but in the moment of excruciating pain that’s all you can think of. I completely agree that people just don’t understand but how could they when it’s not really visible unfortunately. Good luck with your appointment, I hope it goes well! 

I have been dealing with this for about 1.5 years... The first cycle started at end of summer 2018 and I thought I had ocular migraines! My brother had a stroke at 27 (from a clotting disorder we have genetic predisposition for... homozygous MTHFR).. that presented with ocular pain... so I made an apt with my PCP.  He wondered how I was functioning and how my liver wasn't affected by the amount of excedrin I was chewing down. I thought the excedrin was helping but really the headaches were just resolving after taking the excedrin because of how long the headaches last. 

I toughed it out for a few months until my boyfriend ( a physician.. ironically) convinced me to see a neuro that quickly dismissed me because its less common for females to experience CHs. Then I saw a headache specialist in NYC who kept doing SPG blocks even though they didn't work.. trialed me on all these meds that didn't seem to work... and I felt, for the first time, I was being used for my money by a healthcare provider. 

I have since then been with a different headache specialist through a world renowned teaching hospital in NYC... He was apart of the emgality studies and is so knowledgeable. He listens to me! He knows I've done my research so he isn't quick to dismiss me when I say "I was reading some articles and..." I walked into his office crying this morning and he said we need to make a change! So we're trying a whole new approach and will check back in 2 weeks from now to see how it's helping. 

This pain has recently ruined my life. Initially it was "just" 10/10 pain... and I could manage somewhat. But after being so exhausted from no sleep, the anxiety and depression of failed treatments, feeling misunderstood by friends/family.. I've broken down. It affects my mental, physical and social health 100% now. And that's almost worst than just the debilitating pain. I try to hard to stay optimistic but it can be so difficult when it feels there is no end in sight for this "chronic invisible illness."

[xxx]

Hey EyecePick,

We know what you've been going through and the good news is it doesn't need to be that way.  I sent you a PM with the information about starting the anti-inflammatory regimen.  As CH beast has been jumping real ugly making your life miserable, I wouldn't wait for an appointment with your PCP/GP or neurologist if its going to take more than 3 to 4 days.  I would pick up the needed supplements and start this regimen as soon as you have them in hand.  You can see your PCP/GP or neurologist at any time and explain what you've been taking and why.  You should have a copy of the treatment protocol by now so take it along.

The following chart illustrates responses by day after starting this regimen.  As you can see, half the CHers who start this regimen experience a significant reduction in the frequency of their CH within the first week after starting this regimen from an average of 3 CH/day-24 hrs down to 3 to 4 CH/week.  Trust me, sleeping 3 to 4 nights/week CH pain free makes a huge difference.

Take care and please keep us posted.

V/R, Batch