Worst cycle of my life

[Krios239]

I'll try my best to keep it short. I am 34 and have suffered from CH since my early 20's. After years of dealing with this damn condition I have learned all the tips and tricks. I use O2, D3, energy drinks, ginger and sinus plummer which is essentially hot pepper spray up the nose but I have been able to abort some hits if I use it early enough. After going on the D3 regimen in I think 2018 I had 2 years straight with no headaches at all..... Well I was spoiled and my headaches have come back with a vengeance when the weather got cold. Nothing seems to work anymore except "relpax" which is not smart to take all the time but I have no other option... not even O2 is working which is crazy because it was a miracle to me a few years ago. I am curtently on a steroid dose pack which used to give me a few pain free days but that isn't working either.  I started the new D3 regimen a week ago with hopes that it will give me the same remission I had before.... I am at my wits end here... am I missing anything?  What has worked for you guys to go into long periods of remission? 

 

PS. I would absolutely try busting but as I am not in college anymore I cannot come across mushrooms or LSD and I have tried messaging some people I think could get them but have not had success 

 

Thank you for listening,  no one truly understands what we go through everyday

[kat_92]

@Krios239 hey I’m sorry to hear about what you’re going through. It’s almost like that pain free time gives the ch a chance to ramp up. What is your O2 flow? Maybe try a higher regulator since this cycle seems to be pretty heavy. I think you can order RC seeds online. They have the same affect as MM when it comes to treating ch. they don’t ship to where I live, but depending where you are I would look into the RC seeds. 

Yeah get on that D3 as soon as you can. I think it’s really important to stay on it permanently even when you’re not in cycle. Are you on any other preventative medications like verapamil? 

Stay strong and keep us posted 

kat

[CHfather]

Good suggestions from kat'.  When you mention the "new D3 regimen," does that include Benadryl?  If not, I'd include it.  (I think the recommended dose is 25mg four times a day.)

For some people, when an O2 tank gets low, it seems to lose effectiveness. "Low" can be 1/4 left, or maybe even more.  Higher flow rate seems to help with that (new tank is of course better).

Is your pred dose pack a Medrol Dose Pack (the most common kind)?  Often the pred levels can be too low in that to really be helpful.

Relpax is a pill, right?  If it is, I'm surprised that it helps you (but glad it does).

Energy shots (such as 5-Hour Energy) have a lot more caffeine than standard energy drinks (such as Red Bull).

You can get advice about RC seeds here, if you're interested.  Legal to buy and possess in most US states and many countries.

Edited January 2, 2021 by CHfather

[Krios239]

47 minutes ago, kat_92 said:

@Krios239 hey I’m sorry to hear about what you’re going through. It’s almost like that pain free time gives the ch a chance to ramp up. What is your O2 flow? Maybe try a higher regulator since this cycle seems to be pretty heavy. I think you can order RC seeds online. They have the same affect as MM when it comes to treating ch. they don’t ship to where I live, but depending where you are I would look into the RC seeds. 

Yeah get on that D3 as soon as you can. I think it’s really important to stay on it permanently even when you’re not in cycle. Are you on any other preventative medications like verapamil? 

Stay strong and keep us posted 

kat

My regulator goes up to 8 and I asked my O2 supplier if I could get a higher flow one but they are kinda unreliable, but I have to go to a new one in February anyways because of insurance changes.... I may have to look into ths RC seeds, I live in FL so maybe they may ship here?... and yes I stayed on the D3 maintenance dose the whole time during my 2 yr remission...... I took verapamil in the past with no results but I have an appt with my nuro on the 5th so maybe we will start that up again

 

Thanks Kat

[Krios239]

30 minutes ago, CHfather said:

Good suggestions from kat'.  When you mention the "new D3 regimen," does that include Benadryl?  If not, I'd include it.  (I think the recommended dose is 25mg four times a day.)

For some people, when an O2 tank gets low, it seems to lose effectiveness. "Low" can be 1/4 left, or maybe even more.  Higher flow rate seems to help with that (new tank is of course better).

Is your pred dose pack a Medrol Dose Pack (the most common kind)?  Often the pred levels can be too low in that to really be helpful.

Relpax is a pill, right?  If it is, I'm surprised that it helps you (but glad it does).

Energy shots (such as 5-Hour Energy) have a lot more caffeine than standard energy drinks (such as Red Bull).

You can get advice about RC seeds here, if you're interested.  Legal to buy and possess in most US states and many countries.

I am following the most recent D3 regimen that was on this board... it was updated in August 2019 I believe?.... I have it bookmarked, and no I am not taking benadryl, won't that make me pass out? Lol I'm a bartender and there is nothing worst than a lethargic bartender but I will definitely look into that..... I am going through O2 like it's my job, it used to be a miracle but now it only seems to abort abouy 40% of the attacks.... I am taking the 10MG prednisone dose pack which had worked in the past for me and was a bridge to get the D3 working and got me into my 2 yr remission.... and yes relpax is a pill that I have been taking since the beginning but they only give you 6 per prescription so it's this delicate dance on if it's worth it to take it or not..... I usually take it when O2 is not an option a d recently relpax has been the only thing that works for me but I fear I have started to get dependent on it and that I get rebound headaches if I don't have it in my system..... I have experimented with a few energy drink and 5hr energy is definitely in the mix but red bull seems to be the winner for me...... we all know that amazing feeling when we can abort a shadow with just an energy drink lol..... I will definitely look into those seeds

 

Thanks for the advice 

[kat_92]

@Krios239 darn I am in FL too and they do not ship to me. At least in Miami. I purchased my regulator on a website I found through this site. It goes up to 25. Sounds like you might need a higher flow. During a bad hit I don’t think 8 would do much. I got the regulator on wtfarley I think? Make sure it fits the tank you have. @CHfatherI think had the links as to which regulator fits which tank 

[kat_92]

@Krios239 also ask your neuro to make sure it is immediate release verapamil not extended. I think that would work better for you. At least until you could find some MM 

kat

[Krios239]

57 minutes ago, kat_92 said:

@Krios239 also ask your neuro to make sure it is immediate release verapamil not extended. I think that would work better for you. At least until you could find some MM 

kat

Thank you for the information @kat_92and @CHfather . I really appreciate it

[Racer1_NC]

Inexpensive 25lpm O2 regulator: On Amazon

[CHfather]

16 hours ago, Krios239 said:

I am not taking benadryl, won't that make me pass out? Lol I'm a bartender and there is nothing worst than a lethargic bartender but I will definitely look into that

The recommended dosage does make a lot of people tired.  You can take smaller doses, and maybe some more at bedtime.  Overall, I'd strongly suggest PMing Batch, whose handle here is now xxx.  Click on the envelope icon at the top right of the page and put xxx in the To line.

16 hours ago, Krios239 said:

I am taking the 10MG prednisone dose pack which had worked in the past for me

Recommended high dose for CH is 50-80mg, tapering after that.

16 hours ago, Krios239 said:

yes relpax is a pill that I have been taking since the beginning but they only give you 6 per prescription so it's this delicate dance on if it's worth it to take it or not

You do better with imitrex injections or the nasal spray.  A lot more expensive, I imagine. You can split each 6mg Imitrex injector into 3 shots.

16 hours ago, Krios239 said:

I have experimented with a few energy drink and 5hr energy is definitely in the mix but red bull seems to be the winner for me...... we all know that amazing feeling when we can abort a shadow with just an energy drink lol.

Hard for me to imagine why RB would work better than 5Hr, but if that's the case, so be it.  You drink an RB as you're starting on the O2, right?  Ginger is also good for shadows.  

16 hours ago, Krios239 said:

I have an appt with my nuro on the 5th

Gotta say that your neuro doesn't sound great, but that might be unfair, since his/her low-level prescriptions (low flow, low pred, a triptan pill) seem to have worked in the past.

1 hour ago, Racer1_NC said:

Inexpensive 25lpm O2 regulator: On Amazon

If you have a larger tank, which doesn't seem likely but maybe you'll get one from your new supplier, you'll want a different type of regulator for those tanks.  A CGA 540.  This can be an O2 regulator or a welding regulator.  That bridge can be crossed when you get there.

RC is illegal in Florida.  Most suppliers won't ship there. eBay sellers might.

Some of what's in here might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

[Krios239]

6 hours ago, CHfather said:

The recommended dosage does make a lot of people tired.  You can take smaller doses, and maybe some more at bedtime.  Overall, I'd strongly suggest PMing Batch, whose handle here is now xxx.  Click on the envelope icon at the top right of the page and put xxx in the To line.

Recommended high dose for CH is 50-80mg, tapering after that.

You do better with imitrex injections or the nasal spray.  A lot more expensive, I imagine. You can split each 6mg Imitrex injector into 3 shots.

Hard for me to imagine why RB would work better than 5Hr, but if that's the case, so be it.  You drink an RB as you're starting on the O2, right?  Ginger is also good for shadows.  

Gotta say that your neuro doesn't sound great, but that might be unfair, since his/her low-level prescriptions (low flow, low pred, a triptan pill) seem to have worked in the past.

If you have a larger tank, which doesn't seem likely but maybe you'll get one from your new supplier, you'll want a different type of regulator for those tanks.  A CGA 540.  This can be an O2 regulator or a welding regulator.  That bridge can be crossed when you get there.

RC is illegal in Florida.  Most suppliers won't ship there. eBay sellers might.

Some of what's in here might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

All great information,  thank you guys so much

[kat_92]

@Krios239 heyyy I’m a bartender as well! I wait to take my Benadryl until I get home. A lethargic bartender is absolutely the worst hahaha. Sorry you need to work the bar in pain. I sooo understand your struggle ;/ keep us posted 

kat

[Krios239]

19 minutes ago, kat_92 said:

@Krios239 heyyy I’m a bartender as well! I wait to take my Benadryl until I get home. A lethargic bartender is absolutely the worst hahaha. Sorry you need to work the bar in pain. I sooo understand your struggle ;/ keep us posted 

kat

Right?!..... the relpax helps,  I just take it as soon as I know it's not just a shadow and hit is coming and 9 times out of 10 I'm fine..... at the worst I sit in my car for 20 to 30 min

[Dr. Julie]

On 1/1/2021 at 11:34 PM, Krios239 said:

 

PS. I would absolutely try busting but as I am not in college anymore I cannot come across mushrooms or LSD and I have tried messaging some people I think could get them but have not had success 

Have you tried online purchases? There are reputable sites.

[jon019]

4 hours ago, Dr. Julie said:

Have you tried online purchases? There are reputable sites.

......seeds, spores, grow kits....not L or M....

[xxx]

Hey Krios,

Falling out of CH remission while on the vitamin D3 regimen can happen to any of us.  It happened to me in 2015 due to a pollen allergy and again in 2018 due to a mold spore allergy.  We've learned a lot since then.

The winning course of action to get back CH pain free is to start loading vitamin D3 at 50,000 IU/day, ditch the Benadryl (Diphenhydramine HCL) and start taking 3 grams/day Quercetin.  Quercetin is an excellent antihistamine and unlike Diphenhydramine, there's no drowsiness or time limit on dosing.  Bumping the Turmeric (Curcumin) dose to 3 grams/day also helps.  Don't forget the vitamin C.  1g - 2g three times a day really helps.

Stay at this vitamin D3 loading dose for 10 days or until you've experienced a significant reduction in the frequency of your CH for at least 24 hours, whichever occurs first.  At that point drop back to a new maintenance dose at least 5,000 IU higher than previous and see your PCP for labs of your serum 25(OH)D3, calcium and PTH.   If your serum calcium has remained in its normal reference range and there's no joy as CH beast is still jumping ugly, go back on the loading schedule for another 10 days then shoot me a PM.

Take care and please keep us posted,

V/R, Batch

[monggs]

Hi there you should consider making your own DMT. It’s honestly very easy to do. I learned everything on Reddit, and bought everything online and Amazon. mimosa hostilis root bark is what you need for extraction. It is legal and sold as a clothing dye. 
 

I vape a small amount with the APX volt set @ 2.8v and I can completely abort a nasty headache in 5-10 mins with no rebounds. 
 

 

[Krios239]

On 1/4/2021 at 2:47 AM, xxx said:

Hey Krios,

Falling out of CH remission while on the vitamin D3 regimen can happen to any of us.  It happened to me in 2015 due to a pollen allergy and again in 2018 due to a mold spore allergy.  We've learned a lot since then.

The winning course of action to get back CH pain free is to start loading vitamin D3 at 50,000 IU/day, ditch the Benadryl (Diphenhydramine HCL) and start taking 3 grams/day Quercetin.  Quercetin is an excellent antihistamine and unlike Diphenhydramine, there's no drowsiness or time limit on dosing.  Bumping the Turmeric (Curcumin) dose to 3 grams/day also helps.  Don't forget the vitamin C.  1g - 2g three times a day really helps.

Stay at this vitamin D3 loading dose for 10 days or until you've experienced a significant reduction in the frequency of your CH for at least 24 hours, whichever occurs first.  At that point drop back to a new maintenance dose at least 5,000 IU higher than previous and see your PCP for labs of your serum 25(OH)D3, calcium and PTH.   If your serum calcium has remained in its normal reference range and there's no joy as CH beast is still jumping ugly, go back on the loading schedule for another 10 days then shoot me a PM.

Take care and please keep us posted,

V/R, Batch

Thank you Batch,  I have reduced the hits to 1 or 2 per day and hope that there is light at the end of this tunnel

[xxx]

Hey Krios,

Thanks for the updates.  Howz the head now?  Has the frequency of your CH dropped further?

Did you start this regimen with the lab test of your baseline 25(OH)D3 serum concentration before starting vitamin D3?.  If so, what was it?  The normal distribution chart of baseline 25(OH)D3 serum concentrations at baseline from 313 CHers with active bouts of CH responding to the online survey as of Dec, 20, 2019 are illustrated in the following graphic.

The normal distribution chart of 25(OH)D3 serum concentrations after 30 days on this treatment protocol are illustrated in the following graphic.

The following chart illustrates favorable responses by day after start of regimen.  As you can see, most CHers respond within the first two weeks after starting this regimen.

When you've been on this regimen for at least 30 days, see your PCP/GP for lab tests of your serum 25(OH)D3, calcium and PTH.  When you have the results in hand, please take the online survey of CHers taking the anti-inflammatory regimen.  To start this survey, click on the following link:
http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6

Data from this survey is helping neurologists and pain specialists consider this treatment protocol for their patients with CH.  The more data, the better.  This data has already convinced one neurologist to fund a gold standard RCT on this treatment protocol as a CH intervention.  That RCT should start recruiting later this year.

Thanks agaain for the feedback.  Take care and please keep us posted.

V/R, Batch

Edited January 25, 2021 by xxx

[HelenBrinson]

I was unemployed for 8 months after I lost my job. The whole time everything just seemed hopeless. Nobody would even call me for an interview. Finally landed a job. Not a great job but in my desired field. The feeling of finally getting out of that situation was amazing.

[Krios239]

On 1/25/2021 at 2:41 PM, xxx said:

Hey Krios,

Thanks for the updates.  Howz the head now?  Has the frequency of your CH dropped further?

Did you start this regimen with the lab test of your baseline 25(OH)D3 serum concentration before starting vitamin D3?.  If so, what was it?  The normal distribution chart of baseline 25(OH)D3 serum concentrations at baseline from 313 CHers with active bouts of CH responding to the online survey as of Dec, 20, 2019 are illustrated in the following graphic.

The normal distribution chart of 25(OH)D3 serum concentrations after 30 days on this treatment protocol are illustrated in the following graphic.

The following chart illustrates favorable responses by day after start of regimen.  As you can see, most CHers respond within the first two weeks after starting this regimen.

When you've been on this regimen for at least 30 days, see your PCP/GP for lab tests of your serum 25(OH)D3, calcium and PTH.  When you have the results in hand, please take the online survey of CHers taking the anti-inflammatory regimen.  To start this survey, click on the following link:
http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6

Data from this survey is helping neurologists and pain specialists consider this treatment protocol for their patients with CH.  The more data, the better.  This data has already convinced one neurologist to fund a gold standard RCT on this treatment protocol as a CH intervention.  That RCT should start recruiting later this year.

Thanks agaain for the feedback.  Take care and please keep us posted.

V/R, Batch

Hey Batch, I am still having 1 to 2 hits a day but thankfully they are at night and I'd take night headaches over one during the day while I am at work.... Admittedly I am on what I think is the old D3 regimen that consists of (x2 D3 @10,000 I/U, x1 magnesium citrate @250mg, x1 calcium @600mg and x1 fish oil @1200mg) and unfortunately I haven't had any labs drawn for a while but about 6 months ago I did and they were fine

[xxx]

Hey Krios,

We've seen a higher response rate among CHers new to this regimen when they take the Bio-Tech D3-50 50,000 IU water soluble vitamin D3.  As you're still experiencing CH, this is usually an indication your 25(OH)D3 is too low.  Accordingly, you need a higher maintenance dose of vitamin D3.  The most effective method of elevating serum 25(OH)D3 and faster way of returning to a CH pain free state is by starting a 4-Day vitamin D3 loading schedule taking  50,000 IU/day for 4 days.  There's also "Pulsed" loading where you take 200,000 IU of vitamin D3 on Day-1 then coast taking no vitamin D3 on Days 2, 3, and 4.  You take all the cofactors daily.  On day 5 if you're CH pain free restart your maintenance dose at least 5,000 IU/day higher.  If you're not CH pain free by Day-5 continue loading or pulsed loading until you experience a CH pain free response for at least 48 hours then return to a maintenance dose 5,000 IU/day higher than previous.

Either way the goal of the anti-inflammatory regimen is a CH pain free response.  The latest update to this treatment protocol will included loading or pulsed loading until you experience a CH pain free response for 48 hours then drop back to a maintenance dose.  Of course it's always wise to see your PCP/GP for labs of your 25(OH)D3, calcium and PTH any time you've changed your vitamin D3 dosing and at least once a year after you've reached a stable vitamin D3 dose that keeps you CH pain Free.'

Take care and please keep us posted.

V/R, Batch

V

[SurvivingCH]

@Krios239 Sorry to hear about the attacks coming back. One thing that has not been mentioned yet in this thread is cardio exercise. The frequency and severity of my attacks got really bad when my fitness level went down. Running several times a week for at least 25 minutes really helped me to manage attacks. For me, it is certainly not a replacement for all the other stuff (verapamil, oxygen, etc), but the cardio exercise helps me to keep my fitness level up and since doing that a few years ago remission periods have been longer for me. Similar to others, I also found that I can sometimes stop an attack in its onset if I immediately go for 5km run. Some people do jumping jacks instead.

[glo]

Hello

I convinced my husband to take the full regime for 2 weeks and when he didn't respond, he gave it all up.  I'm realizing now that I should have done the loading dose (btw...I can't get him to the doc to take labs so we are guessing which I know is not ideal).  

If I try to get him to take them again, what is the bare minimum of the co-factors along with the higher dose of D3 or is the entire regime necessary.

thank you

[spiny]

This is one of Batchs' first papers on D3. I take the vitamins pictured there, along with Benadryl in pollen season. Adding the B vitamins is good for many, but I cannot take it so did not add it. He should do the loading.

You can order a D3 Test to take at home I think. Or at Lab Corp perhaps. I don't think a doctors order is needed. 

The paper is quite long, but contains good info if it peaks your interest.

ATB!

 

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