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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Please advice needed wrt D3, Oxygen, Benedryl, etc http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1594325105 Message started by nichjfw on Jul 9th, 2020 at 4:05pm |
Title: Please advice needed wrt D3, Oxygen, Benedryl, etc Post by nichjfw on Jul 9th, 2020 at 4:05pm
Hi there,
some help with this cycle would be appreciated. I'm entering an acute phase right now. I've been on the D3 regimen for 3 yrs now. My headaches come on during high pollen season:allergic to grass. I'm currently doing an immunotherapy treatment to hopefully kill my allergies and in so doing end the headaches. Unfortunately the treatment itself is a trigger. So it started 3 months ago. The headaches have been ramping up since then. 2 years ago when I was in this situation Batch gave me some advice about upping my D3 to a loading dose for a week and adding 100 mg of benedryl for one week. It worked a charm and broke the cycle. Unfortunately this time it has not. I have been using 100mg of Benedryl for 3 weeks now. It reduced the headaches but did not end them. Id I try to reduce the benedryl the headaches become much more acute. What to do? Should I increase Benedryl? Go off it for a while and try again? Also, last year I started using oxygen. It works! So much focus on D3 here that I hadn't realised how effective O2 is (I've been getting CH's for 20years). My neuro took some convincing but he finally filled out a script. I do a flow rate of either 15 or 25 L/Min and got a mask from this site. The issue is that I am going through a lot of O2 having access only to E tanks so find myself limiting my intake....not good. Does anyone know a good source to buy an M tank regulator with a flow rate of at least 25 L/Min? Also you talk about direct flow being a great way to go but that the initial set up cost would be expensive. Is there a regulator out there for an M tank that would do both? And another question. When I use oxygen I stop at the 15 min time limit. Often the headache is gone but the shadow remains, if you know what I mean. I fall asleep and then WHAM and hour later a super fast VERY acute headache comes in like a runaway train that even Zomig doesn't seem to get under control. Is this common with oxygen to get a rebound headache. Do any of you have experience when NOT to use O2 and go directly to the Zomig so that maybe you prevent this from happening. Last night the rebound from 02 was so intense I came very close to blacking out, it was one of the worst I've ever had and there have been hundreds if not thousands (I dread to do a tally). I know that's a lot of info, any help on any issue I raised would be much appreciated. 1. How to end this cycle ? Specifically how to deal with titrating the Benedryl. 2. M tank regulator with flow rate of at least 25 L/Min and attachment for both the regular mask and the direct flow system 3. Can O2 cause nasty rebound headaches. What am I doing wrong/ How to fix |
Title: Re: Please advice needed wrt D3, Oxygen, Benedryl, etc Post by nichjfw on Jul 9th, 2020 at 4:40pm
It looks like I need a CGA 540 regulator for a type M tank. Who makes and/or distributes the best CGA 540 regulators ? Is a type M tank what's referred to as a welding tank?
I am getting an on demand valve system with a DISS connection so I am looking for a regulator that connects to that and a Type M tank. Would a welding regulator work? |
Title: Re: Please advice needed wrt D3, Oxygen, Benedryl, etc Post by nichjfw on Jul 10th, 2020 at 2:22pm
Thanks Batch for getting back to me, I very much appreciate any input. Sometimes it can get very painful and lonely. I have the Biotech and am going to try a loading dose. Thanks again, glad to here you've managed to stay pain free the last 2 years, I believe the last time we touched base was right after you had had that episode with the mold in the cabin while salmon fishing in Alaska.
Nick |
Title: Re: Please advice needed wrt D3, Oxygen, Benedryl, etc Post by Kat92 on Jul 11th, 2020 at 12:19pm
Hey Batch! I was reading through your new regimen and see you added Methyl Folate with B12 Complex. I just purchased that and some CoQ10. I messaged you on cluster busters actually a few days ago. I have been on the D3 regimen for a year now but my heavy headache season starts end of June beginning of July. I am chronic CH with shadows all year and bad spells during the summer months. Verapamil was a fail and I am determined to get the D3 regimen to work for me. May I start the loading dose again for a week with added benadryl if I have already been on the regimen for one year? I had been doing the weekly Bio-tech D3 50 as instructed the entire year. Is it safe for me to do the loading dose? I have not had my vitamin levels checked in almost a year, but I recall my vitamin D being fairly low. Thanks for letting me chime in on the thread!
Kat |
Title: Re: Please advice needed wrt D3, Oxygen, Benedryl, etc Post by nichjfw on Jul 23rd, 2020 at 3:47pm
So an update 12 days later. THANKS for the advice Batch, much appreciated. I have been taking the loading dose of 50000 IU D3 and am now stopping as it has been over days. The headaches are not gone but they a MUCH less accute and there were 3 pain free nights, which is more than there had been in the past 2 months. I really want to put this beast to rest but it seems to be right on the edge. I found that upping my magnesium intake from 400mg to 800mg had a huge effect as well. Would you recommend maintaining a elevated D3 regimen of 50 000 IU every 3 days at this point? Again, thanks for the help,
Nick |
Title: Re: Please advice needed wrt D3, Oxygen, Benedryl, etc Post by nichjfw on Jul 28th, 2020 at 10:46pm
Thanks for the response Batch,
I'm going to try to get my levels checked though it's tricky here in Canada right now what with Covid shutting a lot of things down. Thanks for the advice, I feel like I am really close right now, just need to ccompletely close the headache drawer, Nick |
Title: Re: Please advice needed wrt D3, Oxygen, Benedryl, etc Post by Batch on Jul 28th, 2020 at 11:21pm
Hey Nick,
Your National Health System in Canada and in the individual Provinces try to make lab tests of 25(OH)D as difficult as possible to avoid their costs. The best way around this is to tell your PCP you're taking 50,000 IU/day vitamin D3 loading doses (a.k.a., hypervitaminosis D) and want to make sure your 25(OH)D3 is not too high or that you re not hypercalcemic. Telling your PCP this usually works like a charm as the 25(OH)D lab test is covered if there's a possibility of hypercalcemia. Take care and please keep us posted. V/R, Batch |
Title: Re: Please advice needed wrt D3, Oxygen, Benedryl, etc Post by nichjfw on Aug 13th, 2020 at 9:40pm
Hi Batch
thanks for the advice, I'm going to get my levels checked in the next couple of weeks as I do wonder about my calcium levels. Now for the good news, I don't want to jinx myself but I've been 10 days headache free at this point! What seemed to help kick the cycle completely was a canoe trip of all things. 8 days in Temagami, travelling over 100 km through northern ontario widerness. I had just finished 10 days of a loading dose so it was very good timing to get out of dodge and decompress. Stress is a huge trigger with these things for me. Thanks very much for all the advice over the past few weeks, very much appreciated. I'll let you know where my levels are at once I have the data. ps tapered off the benedryl too while on the canoe trip, went very smoothly. |
Title: Re: Please advice needed wrt D3, Oxygen, Benedryl, etc Post by Batch on Aug 14th, 2020 at 5:27pm
Nick,
"10 days headache free" Woo Hoo!!! I love it when that happens. Take care and please keep us posted when your lab results come back. V/R, Batch |
Title: Re: Please advice needed wrt D3, Oxygen, Benedryl, etc Post by LaurenZ on Aug 24th, 2020 at 6:12pm
Hi - wow this thread has been really interesting to read- I feel so relieved and I cant believe i didnt get on this site sooner - I always get my headaches in the spring and have wondered about allergies / inflammation and how it could all be linked - Does anyone find relief in taking something like claritin every day too? Im going to start benadryl tonight (my allergies are always pretty bad here in NM and are crazy right now bc fires in colorado sending tons of smoke down here) and also am going to start daily claritin - I also take montelukast to help control asthma stuff that flares up with allergy season....Thanks for thoughts on this <3 <3
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Title: Re: Please advice needed wrt D3, Oxygen, Benedryl, etc Post by nichjfw on Aug 6th, 2021 at 9:27am
Bit of a Bump
Hi again. The headaches have been kept at bay for almost a year now, but after a pretty severe trigger about a month ago they are rolling in fiercely over the last few days. I did a loading dose without the Benedryl for 19 days starting about 4 weeks ago. It worked really well while it lasted, but the moment, the very night, I dropped back down to 10000 IU the headaches were back. Yesterday there were four starting in the afternoon and lasting until after midnight. I am currently taking 800 mg Magnesium and 240 mcg Vitamen K, as well as fish oil and tumeric. I don't know what to do at this point as my D3 levels must be through the roof, though I haven't done any testing to see about D3/Calcium levels as my doc is out of town. How long do you think I would have to wait before trying another loading dose? I've currently started Benedryl 25 mg twice a day, but I feel like I missed the boat as I should have started it when I started the loading dose. Hindsight is 20/20.... |
Title: Re: Please advice needed wrt D3, Oxygen, Benedryl, etc Post by nichjfw on Aug 8th, 2021 at 5:42pm
Thanks very much for the reply Batch,
so if I understand correctly you have been taking 140,000 IU of D3 three to four times a week for 5 months now. That is much more than I have been taking and puts my mind at ease. It is hard when there is no ready reference point available. That said I saw my GP today and she is going to send me a requisition order for bloodwork. I'll let you know where my levels are at. |
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