Back again after 3 years CH free.
Looked back at my posts, first time bout with it in 2011, then 2014, and had my latest episode last night at 3 a.m.
Fell behind on vitamin D3 regimen so I'm re-starting that today, along with the other supplements. 
Also will be doubling my dose (physician approved) of verapamil to 240mg/day.  Currently taking 120mg/day.

This is really depressing.  When you think you've kicked it only to find out it's been in hiding.

I will keep posting as I progress.

Thank you to this group for having so much information so easily accessible

Same here!! Almost 3yrs CH free. Then bam outa nowhere. Feb1st got my first while sleeping..
  Although for the first time ever in 21yrs... This has been the weekest pain 1-4's that I have ever had. But I rarely ever last longer then a month. I'm going on almost 2 months now..
I don't know why so different this time around?
are yours different as well?

It was a 1-4 on the pain scale and went away quickly, maybe 15 minutes.  Got up and put ice on my eye and temple.
Mine have always started like this and intensify quickly, so I'm really dreading already (at 9:28 a.m.) going to sleep tonight.

Will brew myself a strong coffee also and have that in the fridge to chug.

Are you taking the Vitamin D3 regimen?  It really helped me the last time they resurfaced, like within 3 weeks, but that 3 weeks was hell.

I'm already on a high dose of d3. Alittle to late in the game this time around for me to start.
  Cold coffee? hmm. ill have to try that. JUst got home from neruo. He is putting me on prednisone and topomax. Shall see how this helps me sleep.lol..
  I get them every night while sleeping..

Good luck!  I believe I read on this site that a good shot of caffeine helps at the start of one and well I try to do what I can to stop it from reaching full blown proportion.

Carol,

Wolf down any energy drink at the first sign. The combination of Caffeine and Taurine into the bloodstream in a rush can divert an attack.

Not always but does work sometimes.

Peter.

Thanks Peter!

Hey CaroleA and lirrgirl14,

Both of you had the CH beast licked... then you stopped taking the anti-inflammatory regimen and opened the door for its return... Even if you're episodic, it's best to stay on this regimen year-round. 

It's never too late to start this regimen.  After 6 years working with CHers and collecting data from the online survey of CHers taking this regimen over the last five years, it's very safe to say this regimen has many other wonderful health benefits beyond preventing CH and migraines.

There's only one word of caution for ladies of childbearing age...  Fertility goes WAY UP when you're on this regimen and even higher when your guy is on it too...  [smiley=JAW_DROP.gif]

Moreover, it you've an overpowering urge to fill the home with a warm fuzzy little bundle of joy, there isn't a better gift for that bump in the tummy than a T-Rex immune system and strong bones thanks to the anti-inflammatory regimen. It also helps to ensure a worry free pregnancy.

In this case, I call it the baby bump and suckle regimen.  The little critters need to take if from you while breast feeding too. 

Just be sure to keep you OB and pediatrician in the loop with a copy of the following regimen when you ask for blood tests of your 25(OH)D, total calcium and PTH at scheduled check-ups.  If by chance, you go this route, be sure to ask for a maternal and cord blood lab tests for 25(OH)D at birth.  We need more of that kind of information.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

If you have a smart phone with a QR Code reader, scan the following QR code to download this regimen to your smart phone.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

There's a growing number of ladies with CH who have taken this regimen throughout pregnancy and during breast feeding who will be happy to share their experiences with you in a PM.

Take care and please keep us posted.

V/R, Batch

Thank you Batch!  You're absolutely right and believe me I am kicking myself to hell and back for dropping my D3 regimen.  I started back yesterday and thankfully had a pain free night.  I'm on guard going forward but was thankful for sleep.

Well here I am almost 6 weeks later, and have had maybe 3 nights pain free.  Spent Tuesday night in emergency because I just couldn't take it anymore. Thankfully had an emergency dr that has a family member that suffers from CHs, so it was nice not to have to explain what exactly a CH is. Now waiting for an emergency appointment with my dr. to get a prescription for oxygen.  Hospital can't prescribe.  I'm beyond sleep deprived, I can't think straight, can't function and I'm honestly afraid to go to sleep at night.  Yes I'm feeling pathetic and hopeless at the moment, mostly due to lack of sleep.  I feel nauseous 24/7.  Completely different cycle this time.  Where I only have ever experienced 1 CH per  night, now I am experiencing multiple, with usually 3 per night, so at best I am sleeping no more than an hour before another one hits.  Strong coffee isn't doing anything and I think that's whats causing the nausea because caffeine really doesn't agree with me.  Trying to stay strong and hope that this ends soon or that I get a call from my dr tomorrow and can get the oxygen set up asap.  FML doesn't even describe how I feel.  It's 10:30, I'm beyond exhausted and I'm doing everything to stay awake. 

Carol my heart goes out to you. There's definitely some unfortunate irony with the 3 years aspect. Be strong!

-Gregg in Las Vegas

Hi Carol

With the oxygen make sure you get:

• A non-rebreather mask - this will have a bag on it
  
• A high flow rate - at least 15lpm and higher is better
  

Read up about using it effectively at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Since you're using vitamin D3, are you following the current recommendations - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Hoping that things improve soon for you. Keep us updated with how you're doing.

Carol,

You're still light on serum 25(OH)D.  If you haven't started the 2-week vitamin D3 loading schedule with 50,000 IU/day vitamin D3, I'd do so now.. I'd also double the magnesium to 800 IU/day split 400 mg in the a.m. and 400 mg prior to bed.

If the CH beast is still jumping ugly after a day or two at 50,000 IU/day, give Benadryl, (Dipehnhydraming HCL) a try.  25 mg in the morning and another 25 mg at night should do the trick.  Just be careful and don't drive or operate a chainsaw or table saw.  It will make you drowsy...  If you must drive or operate contraptions, take 50 mg of the Benadryl prior to bed.  It will work just as effectively and help give you a good night's sleep to boot.

Take care and hang in there...  It will get better...

V/R, Batch

Carol

Hang in there. You and I share the same cycle, every 3 years. I will tell you my D3 levels came back at 85 and I, like you, was still getting hit 3 times a night. O2 and Monster helped me a LOT. Now I will tell you what I believe put me over the top and has allowed me to be pain free for over a week now. I did one more dose of 50k D3 AND I take 25mg of Benadryl every 4 hours. Now I don't know if that is overkill or not, but I do know I am pain free and will continue to take it until June (when my cycle would normally be over) Also one more thing my daily dose of D3 is steady at 15k.

Take care and I hope you are pain free soon.

Todd

Thank you Todd, Batch, Gregg and Mike for your input and thoughts. 

I started with the Four-Week Vitamin D Loading schedule (6 weeks ago)and followed it to the letter, including the loading dose of 50,000 D3 in week 1 and 2.  Always taken with my biggest meal of the day, with orange juice and some honey, for the boron.

I will start again on the Two week loading schedule starting today.  How long should I stay on this dosage?  I will also look into the Benedryl but have to find out if it interacts with my meds (verapamil, elavil and trazadone).  I'm a lightweight so I have to be careful what I take/add.

The dose of magnesium I am taking is 500 mg, so I will try to find a 400mg size and take it twice daily

I'm ordering a non-rebreather mask as I think what they will give me is the Nasal cannula and I have noted the high flow rate of at least 15lpm and higher.

Mike, yes, the link you included is the dosage recommendation I am working with and have used in the past 2 cycles.

Earliest appointment I could get with my physician is this coming Friday (not impressed but not much I can do) and I hope that I will be able to get set up with the oxygen the same day, especially with the weekend following.

THank you all again for your replies, being able to come back here at the very least give me a few more options than I had yesterday.  Sleep was nonexistent again the last few nights but yesterday I did manage to nap for 45 minutes twice.  Pathetic really but I feel better after I napped.

.

Took the 50,000 D3 after dinner last night and had the best night's sleep I've had in 4 weeks. Woke up once with a minor twinge which lasted maybe 15 minutes from start to finish and was able to go back to sleep.  THANK YOU THANK YOU THANK YOU!  Will continue on the 50,000 for the rest of the week!

Hey Carole,

Great news! Thanks for the update...  It appears you've discovered another reason to stay on this regimen year round.  If you were off vitamin D3 for more than 3 months, I would take the 50,000 IU/day Vitamin D3 loading dose for 12 days.  That totals 600,000 IU of vitamin D3 and that amount should elevate your serum 25(OH)D up to the target range of 70 to 90 ng/mL.   

Obtaining the lab test for your serum 25(OH)D next Friday is a must. That will tell us how long you need to stay at 50,000 IU/day loading dose.  Call your doctor's office on Monday to see if he will write the script for this lab test in advance of your appointment.  That way you'll have the results to discus. 

If there's a question of coverage, tell your doctor or his assistant you've been taking 50,000 IU/day vitamin D3 so the rationale for this lab is Hypervitaminosis D.  You don't/won't have it, but that is a mandatory  coverage item for most insurance companies.

As long as you're responding to the 50,000 IU/day loading dose, you can keep your powder dry on taking the Benadryl (Diphenhydramine HCL).  I would pick up some Children's Allergy Medicine Liquid Benadryl (Diphenhydramine HCL) just to be safe.  An allergic reaction this time of year is still in the cards.  When an allergic reaction hits, it releases a flood of histamine that makes all the CH prevents less effective. 

Diphenhydramine HCL is a first-generation antihistamine that crosses the blood brain barrier to block H1 histamine receptors on neurons throughout the brain and in particular, the hypothalamus and trigeminal ganglia.  Once block, the histamine cannot do its insult.  That enables the vitamin D3 to do its genetic expression thing to prevent your CH.

Regarding drug interactions between Benadryl (Diphenhydramine HCL) and elavil or trazadone...They can cause an increase in drowsiness.  If you're taking these two drugs for your CH... You should be able to come off both once you're PF with the vitamin D3 regimen... Talk with your doctor first about doing this.

Take care and please keep us posted.

V/R, Batch

UPDATE:  Well the CHs been coming and going, mostly coming and staying with no relief.  I had my appointment with my family physician and after calmly, albeit impatiently, trying to explain why I do not want to take the Triptan meds she is pushing ('scuse the pun) she finally agreed to write the script for the oxygen.

So I am now back at home with my non re-breather mask waiting for delivery of a tank.

Didn't get blood work done as this was an emergency appointment so I have to call Monday to schedule that.

I swear......don't let anyone ever tell you that healthcare in Canada is great!  It's not!  Oh and I have to pay for everything for the oxygen because I'm self employed and our provincial (Ontario) government health insurance doesn't cover it.  Not crazy expensive though, I think $80, $20 of which is equipment rental which I can return once my cycle stops.

This will be my first experience with oxygen so I will come back tomorrow and update

Carole,

Best of luck with the Oxygen. I presume the script is for 15LPM flow rate???

Also, did you get the mask here?

Don't hesitate to ask questions and have a look at the Oxygen Info tab, above left on this page, highlighted in yellow.

Peter.

Peter, No I didn't get the mask here but I plan on ordering one.  They provided a non re-breather with the tank so I think I'm good to go but thank you I will definitely read everything in the Oxygen info section.  Yes the script is for the script is for 15LPM flow rate.

Good to go then Carol,

The mask on sale here is designed specifically for Cluster Headache and therefore, if far more effective than the standard issue.

So, best of luck and hope you get great relief from it.

Incidentally, I also refused to take Triptans as I didn't like the effects on the heart that long term use causes.

Keep us updated on your progress.

Peter.

Went to bed at 11:25.  Woke up at 2:24 with the start of a CH!  Got up right away, had the oxygen mask on by 2:25, and by 2:29 I was PAIN FREE!!!  Left it on for 15 minutes, went back to bed and slept until 7!!!  Prayers are answered!

Carole,

That's great news. We love to hear this. Pain free is what we all aspire to.

Peter.

Wonderful news. There is nothing quite like the feeling when you have something that will kill off a CH.

Carol,

Are you still taking the 50,000 IU/day vitamin D3 loading dose?

Take care and please keep us posted.

V/R, Batch

Mike!  Definitely!  I was so sleep deprived yet I didn't want to go bed or have a nap no matter how exhausted I was.  It's an awful feeling really to be afraid to let your body rest and get the sleep it needs.

Batch, Yes I've been taking the 50,000 loading dose of D3 as you recommended.  I will stay on it for 12 days.

Another CH last night which started at 2:10, started the oxygen by 2:11 and by 2:15 it was gone!  Went back to bed after 15 minutes on the oxygen and slept soundly till 7! 

Great news to read Carol. Seems you are on the right track. ;)

-Gregg in Las Vegas

Carol,

Have you given the Benadryl (Diphenhydramine HCL) a try?  The pollen count is fearsome these days making an allergic reaction the real problem.  An allergic reaction triggers a flood of histamines.  When that happens, none of the CH preventatives will be effective...

Diphenhydramine is a first-generation antihistamine that passes through the blood brain barrier to block H1 histamine receptors on neurons throughout the brain and in particular, the hypothalamus and trigeminal ganglia.  Once blocked, vitamin D3 has a much better opportunity to prevent CH.

I've been using Children's Allergy Medicne, Liquid Benadryl (Diphenhydramine HCL).  12.5 mg (5 mL in the measuring cap) in the morning and another 12.5 mg in the evening prior to bed.  It works like a charm.  It also enables me to take lower the dose of vitamin D3.  I'm back down to 10,000 IU/day vitamin D3 and the Big Leaf Maple pollen is blowing around like a yellow dust storm.

Do try to see your PCP or neurologist for the lab test of your serum 25(OH)D.  Knowing your present vitamin D3 status with this lab test is important.

Take care and please keep us posted.

V/R, Batch

I took the 50,000 for 12 days like you suggested and have now dropped down to 20,000 mg/day. 

I am beyond happy to let you know that I am now 3 nights pain free.  Sleeping my nights and today woke up feeling like a human being.

Again I want to thank everyone that provided suggestions and support.  It's a very lonely place to be when you are going through these cycles and feel like you have nowhere to turn! 

PS  I now have 2 filled oxygen tanks, blew through the first one in like 4 days, panicked, called the oxygen supplier and they were out here before the end of the day with 2 new tanks!

Edited to add:  No I did not try the benedryl.  With the oxygen the CH's were bearable, and I'm still waiting for a call back from my family physician for the request for blood work. 

This is a really fabulous update Carol. Keep strong! ;)

-Gregg in Las Vegas

Great news! It really is amazing when you start to get control of your life back from CH.

With oxygen you need to get a good idea of how much you're using and ensure that you keep sufficient cylinders on hand to cover things like public holidays, bad weather (depending where you are), etc. so that you don't run out.

Great news Carole.

Wishing you pain free long into the future.

I suggest you get the Benadryl now anyway and have it in your arsenal for when you might need it.

Peter.

I agree... I am still taking 25mg of Benadryl in the morning and at night (sometimes another one during the day) I no longer get sleepy from them so I figure it cannot hurt. Pollen here has been crazy this year and I believe this has kept the headaches away (along with the D3 batch, of course)