My latest cycle started five weeks ago, got through a few attacks with expired Imitrex until I could see a doctor. I started verapamil 180 mg per day four weeks ago, up-ped it to 360 mg per day two weeks ago (I know it is low, but have two more weeks until I see the neurologist again). I also started the D3 regimen four weeks ago with 10,000 IU D3. That wasn't working after three weeks so I up-ped the D3 to 20,000 IU per day.

Now the attacks are sporadic... always at night after I fall asleep, but not sure what to make of it:
Thursday - O2 worked.
Wednesday - O2 didnt work, needed Imitrex injection.
Tuesday - O2 didnt work, needed Imitrex injection.
Monday - no pain
Sunday - no pain
Saturday - O2 worked.
Friday - O2 worked.
Thursday - O2 didnt work, needed Imitrex injection.

What tonight ? :-/

Hi Frank,
Sounds like you need to increase the Verap to 480mg, most likely using immediate release 80mg tablets, divided 2 or 3x/day.  Call your doc and see if they can call it in to the pharmacy for you, as you simply can not wait, right?

Might consider increasing the D3 with a loading dose of 50,000 iu in addition to your daily dose.  Using the Omega 3 fish oil, Calcium citrate and Magnesium citrate also; and donl;t forget a multi-vitamin that includes Vitamin A, Boron and Zinc.

The o2 will work, just got to make sure you get on immediately when you feel the least bit of pain/onset of attack.  Don't wait for it to become a full blown attack if you can prevent it by hyperventilating with 25 lpm+ while it is still a shadow/low KIP.  Slamming a Redbull prior to hyperventilating seemed to help me quite a bit, but limit the energy drinks to 2/day max due to Verapamil.

Hang in there!

-Gregg in Las Vegas

I'll see if I can get my doc to increase the verapamil. I used 480 mg per day before but this new doc was hesitant to increase it from 180 mg to 360 mg... worried about my blood pressure getting too low. I don't see how since my blood pressure is normally about 150/85, but will ask.

Monitor your blood pressure often, preferably daily.  Most pharmacies have the cuff you can shove your arm in and get a free test.  Tell your doc you will agree to monitor your BP and also your heart rate and if there are any concerns, that of course you will be responsible to let him know. 

Verapamil above 480mg is commonly frowned upon by doctors without getting an EKG by a cardiologist to show your heart is healthy enough.  Unfortunately, CH's often require Verapamil dosages (480mg+) much higher than the typical dosages prescribed for hypertention, angina, etc. and this is why most doctors are so timid of prescribing higher dosages of Verapamil.  Not to mention the fact that most doctors don't have a clue how to treat their CH patients ::)

If you need thorough understanding of Verapamil- how to get higher dosages prescribed, EKG, taper up, taper down, etc...there is a great thread from Fall 2011 that you can search on this site titled "Verapamil Dosage" under the Medications, Treatment board.

PF Wishes to you Frank ;)

-Gregg in LAs Vegas

Quote:

Not to mention the fact that most doctors don't have a clue how to treat their CH patients

Yeah I have gotten through the past 13 years (since I found this site) telling my clueless doctors what I need, and they usually prescribe it.

Except, curiously my current (now ex) doc said he would prescribe O2 and changed his mind, then again said he would and changed his mind. Like I am going to get high on the stuff? I didn't ask a third time.

Frank, you and me and so many others are frustrated with doctors regarding our treatment.  Simply, there is no time to wait for an appointment

...or eventually see the so called doctor and be told to come back and see me if it gets so bad you need Imitrex injections but for now we will hold off and use the Imitrex pills

...or just try the script I am writing for a few days and if it doesn't work, we will try something else

...or I don't think your insurance will cover it, so i'm not going to prescribe o2, afterall you don't have a respiratory issue...etc , etc ,

...just so many ignorant statements and prescriptions with incorrect types of medicine and incorrect dosages and poor choice of combination "cocktail" of medicines, the list of what i've heard over the years could go on and on, but think you get the point that I sympathize with your frustrations.

Simply too many uneducated medical professionals that are only aware of CH from old textbooks and vaguely can even describe what a CH even is....I think the headache specialists and neurologists should all be required to experience one attack for about 10 minutes as part of their headache disorder formal education...that would help them understand the importance of not wasting time with CH treatment >:(

Fortunately, I have learned enough that I no longer need to seek CH advice from doctors and instead I educate them after I pull their ego out of their ass! ;)

-Gregg in Las Vegas

LasVegas wrote on Aug 30^th, 2013 at 6:23pm:

I think the headache specialists and neurologists should all be required to experience one attack for about 10 minutes as part of their headache disorder formal education...that would help them understand the importance of not wasting time with CH treatment

Equally it might make them give people with CH or suspected CH priority in getting appointments instead of sometimes making them wait months for an initial appointment. I fail to understand how anyone who claims to have knowledge and experience of treating CH cannot understand the pain and suffering that such a long wait has on someone and their family.

Mike NZ wrote on Aug 30^th, 2013 at 8:47pm:

LasVegas wrote on Aug 30th, 2013 at 6:23pm: I think the headache specialists and neurologists should all be required to experience one attack for about 10 minutes as part of their headache disorder formal education...that would help them understand the importance of not wasting time with CH treatment Equally it might make them give people with CH or suspected CH priority in getting appointments instead of sometimes making them wait months for an initial appointment. I fail to understand how anyone who claims to have knowledge and experience of treating CH cannot understand the pain and suffering that such a long wait has on someone and their family.

Exactly my point of having them endure a 10 minute attack, so that they would understand the urgency of being seen and prescribed appropriate treatment immediately. 

Every second counts, every minute while being tortured by the dragon feels like 5 minutes and every 5 minute segment feels like an hour...by the end of a week, the pain and suffering takes a real toll on us....by the end of a month or two, one could easily lose their mind....so needless to say, a 2 month wait to see a doctor for the 1st visit is just not reasonable.

I think scheduling an appointment for CH's really should be treated as if it was similar to any other medical emergency.  But unfortunately if it's not the "red tape" of available appointment times/days, it's an insurance factor, and ultimately a lack of education specific to CH's.

One suffering from CH's should never have to wait more than one business day to be seen by a qualified doctor....pinch me, I was fantasizing about a perfect world ;)

-Gregg in Las Vegas

LasVegas wrote on Aug 30^th, 2013 at 3:02pm:

Might consider increasing the D3 with a loading dose of 50,000 iu in addition to your daily dose.  Using the Omega 3 fish oil, Calcium citrate and Magnesium citrate also; and donl;t forget a multi-vitamin that includes Vitamin A, Boron and Zinc.

^^ I did 20,000 per day for about 3.5/4 wks and things were very strange...during that time I did the loading dose twice and each time it made big difference, along with the other supplements mentioned. I didn't have a test before starting, but took me that month to get my D3 level to a 60.  It has stretched out this cycle weeks longer than usual for me, but so worth it. now tapering down to 10,000 per day and experienced a few hits after days of no pain, mild but definately immediately after dropping the D3... getting another test soon.

Deazle wrote on Aug 31^st, 2013 at 5:36am:

LasVegas wrote on Aug 30th, 2013 at 3:02pm: Might consider increasing the D3 with a loading dose of 50,000 iu in addition to your daily dose.  Using the Omega 3 fish oil, Calcium citrate and Magnesium citrate also; and donl;t forget a multi-vitamin that includes Vitamin A, Boron and Zinc. ^^ I did 20,000 per day for about 3.5/4 wks and things were very strange...during that time I did the loading dose twice and each time it made big difference, along with the other supplements mentioned. I didn't have a test before starting, but took me that month to get my D3 level to a 60.  It has stretched out this cycle weeks longer than usual for me, but so worth it. now tapering down to 10,000 per day and experienced a few hits after days of no pain, mild but definately immediately after dropping the D3... getting another test soon.

Why would you write that the D3 has stretched out your cycle longer than usual?

If you experience hits, mild or severe, why are you reducing D3 when you previously were painfree with higher D3 dosages?

If you drop to 10,000 iu and are experiencing hits, i'm willing to bet your test will show you are still not in the "green zone" aka D3 deficient for CH relief and/or not using the regimen cofactors properly.

Sounds logical that you stay on the D3 at higher dosage to achieve painfree status.

Good luck ;)
-Gregg in Las Vegas

LasVegas wrote on Aug 31^st, 2013 at 3:43pm:

Deazle wrote on Aug 31st, 2013 at 5:36am: LasVegas wrote on Aug 30th, 2013 at 3:02pm: Might consider increasing the D3 with a loading dose of 50,000 iu in addition to your daily dose.  Using the Omega 3 fish oil, Calcium citrate and Magnesium citrate also; and donl;t forget a multi-vitamin that includes Vitamin A, Boron and Zinc. ^^ I did 20,000 per day for about 3.5/4 wks and things were very strange...during that time I did the loading dose twice and each time it made big difference, along with the other supplements mentioned. I didn't have a test before starting, but took me that month to get my D3 level to a 60.  It has stretched out this cycle weeks longer than usual for me, but so worth it. now tapering down to 10,000 per day and experienced a few hits after days of no pain, mild but definately immediately after dropping the D3... getting another test soon. Why would you write that the D3 has stretched out your cycle longer than usual? If you experience hits, mild or severe, why are you reducing D3 when you previously were painfree with higher D3 dosages? If you drop to 10,000 iu and are experiencing hits, i'm willing to bet your test will show you are still not in the "green zone" aka D3 deficient for CH relief and/or not using the regimen cofactors properly. Sounds logical that you stay on the D3 at higher dosage to achieve painfree status

Of course...I suppose I left a bit out in trying not to interject too much.  As I have read with quite a few others, this D3 regiment has dropped my pain levels way below what they ever have been, but my cycle has lasted longer than ever before as well...fewer hits by many fold, and pain levels low enough that I've only had to use oxygen twice in the last two weeks i think. I stayed at the 20000 per day of the D3 for a bit after my test, and am just beginning to try tapering down a bit before my next test. I have definitely been following all of the suggested intakes of the other items as well, my intent was to point out that it is very noticeable when I stray from the high D3 doses, and to support Frank with his original post in hoping that if he upped his dosage, and added the other items, it may help as it sounds exactly like what I was going through the few days before ramping up my D3 in the beginning.  I suppose I have weened back on the D3 a bit too early for sure, as I thought the cycle may have ended.

Deazle,
Awesome that the D3 regimen is working for you!  Testing it's effectiveness by reducing your dosage has proven it is in fact very effective for you.  Congratulations as it is not effective for everybody. 

Now that you know how effective it is with your experimental testing of reduction, I imagine you will choose to avoid any pain whatsoever by increasing your dosages back to the dosage that brought you pain free. 

Of course it may take a few nights or more before your D3 levels stabilize, but you know the drill with loading doses to speed it up, and adding extra mg of Calcium Citrate while D3 loading is in progress, etc.

The concept of D3 toxicity is very rare so there should not be too much concern there considering you are deficient to begin with.  Certainly D3 toxicity can easily be avoided by following Batch's protocol and monitoring your D3 levels with a test every few months. 

Chances are excellent in your favor that if you are pain free with this regimen while in cycle, that you will prevent future cycles from occurring and remain pain free forever when taking this year round.

This has proven effective for over 80% of CH'ers that have followed this regimen!  I honestly believe the % of success will increase as CH'ers take more time to educate themselves on the importance of monitoring their D3 blood levels with testing and the importance of following this regimen exactly as Batch prescribes.  Congrats that you are one of the lucky ones to be pain free, keep at it! ;)

-Gregg in Las Vegas

PS  It is only your speculation that the D3 regimen has stretched your cycle weeks longer than normal.  Keep in mind this may not be true at all and most likely is not the reason for your cycle duration to be different than previous.  Each and every cycle is unique in many many aspects, including cycle duration.

Frank,

How are the verap and D3 are going for you?
Sleeping through the night  yet?

I think D3 and/or verapamil are starting to take hold, but not there yet. My attacks have been spotty the past few days. Needed Imiterx injections the first few days this week (none past 3 days). Needed O2 several times Friday night. None last night... actually slept the whole night. Needed the O2 once today... don't usually get hit in the middle of the day. Not sure what is going on.

I have a neuro appointment Friday so I am going to ask him to up the verapamil to 480 mg (currently at 360) and get a D3 blood test.

Sleeping an entire night is really great news Frank! ;)

Hope you get the 480mg approved.  Just agree to an EKG if it pleases your doc to go that high with Verapamil. 

Of course always monitor your heart rate and blood pressure when taking Verapamil and limit your energy drink consumption if you use them to help abort.  Always avoid consuming grapefruit products with Verapamil. 

You wrote you are on 360mg?  Are you on 120mg or 180mg sustained release tablets?  Might consider asking for some 80mg immediate release to mix it up a abit.

Good luck on Friday. ;)
-Gregg in Las Vegas

Gregg, I am using 180 mg sustained release tabs, twice a day. I normally have high blood pressure and my body seems to adapt to verapamil without issues so far.

I tried Redbull and Monster a few times, but they taste so nasty I don't use them.

FrankF wrote on Sep 8^th, 2013 at 8:29pm:

I tried Redbull and Monster a few times, but they taste so nasty I don't use them.

I use rockstar... the black & red,  white & red, and blue & black .  those are higher in Taurine, and lower on the other ingredients than the redbull or monster, and taste better in my opinion, don't have that metallic tartness. low in caffeine as well so usually have to add coffee. Just a thought if you try another energy drink with the O2.

Glad to hear you had a night of uninterrupted sleep, Awesome!

Deazle

LasVegas wrote on Aug 31^st, 2013 at 5:44pm:

Deazle, Now that you know how effective it is with your experimental testing of reduction, I imagine you will choose to avoid any pain whatsoever by increasing your dosages back to the dosage that brought you pain free.

Gregg, I have gone back to the 20,000 per day of D3, hadn't taken any loading doses past two weeks. large shadow all day today, took a little 20000 loading dose ontop of the reg dose this morning, along with energy drink...shadow gone by this evening.  getting my 2nd bloodtest tomorrow :)

I just started a predisone taper and buspirone 10mg twice a day and i have been painfree all day! But the side effects of these meds suck... has anyone else tried either of these?

I use prednisone as a transitional drug. It provides a 100% block for me, I use it on a taper, 80-zero, while my prevent builds up. It's for short term use only as it's hard on your body. I've never heard of the other med you're using. As I mentioned in your other post, your doc is clueless about CH. No knock on your doc, it's a rare disorder. Where you located, maybe we can refer you to a doc who others have used and already educated.

Joe