Doc Started Me On A New Medicine

[charles87sf]

Hey all! 

As of this writing, I'm getting further into my latest and greatest cycle. I'm averaging 2-3 hits per day(this is prior to the new med: Will detail that in a moment). I recently went to a new doctor to attempt to get oxygen prescribed. Unfortunately, he did not.... He did, however, prescribe a medication I've yet to hear of. It's called Amitriptyline. Here's the following events in order

10Feb2022: Doc appt at 3:30. He prescribes Amitriptyline. 150mg dose once daily taken at night. I go about my day, get the meds and head on home. I take my first 150mg pill that night. 

11Feb2022: The next morning, my wife had to wake me(that never happens) to get ready for work. I stumble to the bathroom. Wife wakes me AGAIN 30 mins later because I'm laying in the bathroom floor with the shower running. I'm at a lose because I don't remember a damn thing!! Screw it... I jump in the shower and get ready for work. 

11Feb2022: Later in the day(approx2-3pm) I realize I don't remember driving to work... I work 40 mins away from my house!!! 

11Feb2022: Later that night, I talk to the wife about my concerns of the day... She's concerned, of course, but I take the 150mg pill again much earlier than the night before and eventually pass out.

12Feb2022: I wake up late as hell!!! Thankfully it's a Saturday and I didn't have to work. Cotton mouth galore... Feel groggy as well...BUT SO FAR CLUSTER FREE!! 

12Feb2022: Wife and I meet up with a friend of ours later in the day and low and behold, he has Amitriptyline 25mg pills and he no longer takes them!! I'm sure you can figure what happened next. Still cluster free at this point. 

12Feb2022: Take 25mg pill that night and go to bed.

13Feb2022: STILL CLUSTER FREE!! Fingers crossed/so far so good. Go about my day and take another 25mg later that night. 

14Feb2022: Woke up and off to work I go. Time as of right now is 1330hrs on 14Feb. Still cluster free. 

I would appreciate all thoughts and personal experiences!!!

 

 

[BoscoPiko]

No personal experience to share but first off I am happy you are CH free. I did read a bit about the medication you mentioned and the main side effects are pretty inline with what you have been experiencing (dry mouth & feeling sleepy and a few others). I didn't see any mention of the memory loss but medications can have different effects on everyone. Sounds like by you lowering the dose you have cured the sleepy issue so I say woohoo to you! I hope it continues to work for you for a long time! 

[EmpiresBurn]

I have no experience with that med, but I am interested to hear if lowering the dose really worked like it seems. 

I would personally like a little longer timeline before I am sure as I have gone a few days here and there CH free only to be hit out of nowhere. 

[CHfather]

Amitriptyline is Elavil.  If you put each of those words into the search bar at the top right of the page, you'll see a lot of experiences described.  There was a time when it was commonly prescribed for CH.  I wrote someplace that it seems to be a weird med for CH -- helping some people a lot and others not at all.  150mg seems like a gigantic dose -- 25 is much more common (so I'm glad you found your way there) and we've seen even 10.

I'm glad it's helping you.  I'd be a little wary of a doctor who won't prescribe oxygen and who does prescribe a med that is not on the standard CH pharma list, and prescribes it at such a debilitatingly high level. OTOH . . . so far, it's working.  May that continue.

(If the time comes that you want to pursue oxygen again and this doc still won't do it, welding O2 is always a possibility.)

[Pebblesthecorgi]

Amitriptyline is an old fashioned antidepressant in the tricyclic class.  These types of meds were used extensively as anti depressants until SSRI's (Prozac being first to US market) took over the market.  They currently are often used for chronic pain, sleep disorders and some forms of headache.  Some doctors still use as an anti depressant.  

Starting at 150 mg is extraordinarily high dose and can be dangerous.  You have experienced the danger for sure.  Getting somewhere without knowing how or why is pretty dangerous.

As amitriptyline has been around for a very long time it has been tried for a lot of conditions including cluster headaches.  There is some evidence for the med in prevention of cluster headaches but its pretty spotty.

Given the evidence available for oxygen as an abortive for cluster headaches its inexcusable any knowledgeable provider would deny  access.

[Shaun brearley]

2 hours ago, Pebblesthecorgi said:

 

Given the evidence available for oxygen as an abortive for cluster headaches its inexcusable any knowledgeable provider would deny  access.

I'd go see a headache specialist. Not a lot of doctors understand CH let alone understand how to treat it 

[CHfather]

You are right, Shaun', and your advice is right. 

And at the same time . . . this doctor seems to know that charles' has CH, and, as Pebbles' keeps reminding us, virtually all doctors have an online or hardcopy resource that tells them what the evidence-based prescription should be.  Oxygen will be listed right there, in uncomplicated terms, as the #1 or 1a abortive, along with sumatriptan/zolmitriptan (and amitriptyline probably won't be mentioned at all), so Pebbles' is also right that not prescribing oxygen is pretty darn close to inexcusable.

[charles87sf]

Hey all! 

Thank you for all the responses that have come through regarding my use of Amitriptyline! As of this writing (2/16/22 at 1520hrs) I am still cluster free. *four fingers crossed*  Prior to taking the AMI, I was averaging 2-3 a day and that was on the upswing of my cycle. I'm still using the 25mg each night before bed and I've yet to have another morning like I had after the first time taking the 150mg. After researching some, I agree that 150mg seems exceedingly high for a first time user!! But hey.... memory lose to go CH free?... I think most would take that  ... Overall, I will continue to monitor occurrences and keep you all abreast of any changes! 

 

On another note: So many of you have stated that oxygen should be given out, hands down!... But I keep coming across other posts saying that oxygen is difficult to get in the USA for some reason. Those with CH throughout Europe seems to have no problem at all getting oxy. Why is USA docs not prescribing oxy?

 

Charles

[Shaun brearley]

I'm in UK took me over 20 years to get o2 . You really need to see a headache specialist.  Doctors no good !!!!!!! 

[BoscoPiko]

2 hours ago, charles87sf said:

Why is USA docs not prescribing oxy?

I am in CA and had to jump through hoops to even see more than a general provider. When I finally was able to see a neurologist it was one of the first things that he suggested to abort and the verapamil as a prevent. I think like Shaun suggested you may want to find a headache specialist as they may be more willing to give you the O2. 

[CHfather]

2 hours ago, charles87sf said:

Why is USA docs not prescribing oxy?

A lot of reasons. One is that they don't know, and are too lazy/uncaring to look it up.  Another is that most doctors have very little experience with high flow O2 and are therefore reluctant to prescribe it, even if they know they should. If they have patients who use O2 (e.g., for COPD), it is lower flows. At a very basic level, they don't even know how to write a prescription for high flow O2 for CH.  Another is that, as is true so far in your case, something else they prescribe, that they are familiar with, does the job satisfactorily (this also happens when docs prescribe Imitrex--it ain't a great solution, but it does stop the pain, and the patient might not know any better). When that happens, they have saved the patient the expense and hassle of getting/having O2 (regardless of the vey different side effect profiles).  Another is that stuff they prescribe doesn't work, but the patient doesn't come back, for whatever reason (finds another doc; finds a different method (e.g., busting, D3); gives up), and the doctor assumes the prescription did work. (I swear I remember reading some study once that said some large percentage of doctors believe that the prescriptions they write for CH are highly effective.)  Related to all of the above is that many doctors think pharma first.  Sometimes docs will tell people that they'd like to prescribe O2 but the person's insurance probably won't cover it.  This seems to me. again, more like an excuse than a reason.  And these days, there are actually O2 shortages in some US places because it has all been going to COVID patients.

[BostonHeadacheDoc]

Hi,

As stated amitriptyline is a very old medication which when used appropriately for other headache disorders can work very well and I prescribe it frequently. Dosing is very important. Patients often misinterpret the reasons why providers prescribe amitriptyline given its first use was as an antidepressant (at doses >75mg/day). Although useful in migraine, cervicogenic headache and even tension-type headache, not clear it has a role in CH. I never start more than 10mg nightly (some physicians will start at 25mg). Information sheets on amitriptyline from pharmacy are horror-shows, as they are written more for the psychiatry doses and talk about black box warnings for suicidality etc. Not to worry for small doses. 

Starting amitriptyline at a dose of 150mg nightly is WHACKADOODLE crazy, in my opinion. 

BHC

[Juss]

What concerns me is that he could use nortriptyline, also a three-ring, with far fewer side effects, to accomplish the same thing. And, it won't knock your ass out. You may have a difficult time taking a piss-however. That stated, neither is the front line, even secondary for Cluster Headaches. In Migraines, it is now suspect. And, I best not disclose the dangers of antidepressants: I know psychiatrists that refuse to prescribe them in fear of a malpractice suit.

Now, what confuses the hell out of me is, if he wants to play with fire, then why won't he prescribe duloxetine? Duloxetine, dual reuptake, SNRI, well known for chronic pain (non-analgesic), and has some efficacy in SOME, with Cluster Headache.

If he is going that route, he might as well try the beta-blockers. Note of caution, all of the aforementioned, even the amitriptyline cause LDS. Verapamil at 80mg, 3 times per day, is what I believe is the starting dose. I think Propanol is not used but for migraines? I have heard of people pushing over 900mg on Verapamil, obviously by titration. I could have sworn that was the go-to drug at one time.

I used to hear of Lithium being used, and that is one hell of a drug if you are a pill-popping Manic Depressive Crackpot. If not, I could see it being intense. Many have complained to me, and for me, I love it. It slows the thinking down, sleeping sober, yikes!

Anyways, if you don't mind being fat and bald, and don't mind the deleterious and deplorable side effects, Divalproex is purportedly better than Lithium in some trials. In the psych world, we all refuse it. The girls with eating disorders refuse two drugs: Remeron and Divalproex, to give you an idea. Even Inositol, Choline, and Vitamin B8 won't slow down hair loss. Good luck countering with Noassamax (toprimate).

Speaking of Toprimate, I don't buy the misinformation. It will take considerable time/titration, but if you reach 100mg, even to 200mg, you will find relief. Especially when you take 800mg of magnesium. And, LDN (Low Dose Naltrexone) will not do a damn thing by itself; however, combine it with the Dopamax (toprimate)-no more headaches, but on rare flare-ups. If you really want to end it, keep hitting those calcium and sodium channels by adding the adjunct, Lamotrigine. 

You do you, I hire docs that listen, read what I read, and write what I want (within reason). If not for other health issues, I have spectacular results. Calcium, Sodium Channels, Low Dose Naltrexone. Oh, all my drugs cost less than $3 per month.

 

 

[Juss]

Research Oxidative Stress, Free Radicals, Leaky Gut, even Leaky Brain. I'm down to 100mg of Toprimate, and pred tapers when it gets out of hand. You should have seen the pharm list 2.5 years ago, it was pushing 15 drugs.

No offense to the Oxygen, I get scripts that make me not pass go when shit gets real. The goal is to enter a state of oblivion. I'm well known to need doses that would put a horse on its ass. There are nighty night drugs. Look into it. You don't have to suffer. Why live through the pain? Blackout!

quetiapine 300mg, propanol 20mg, hydroxyzine 50mg, Thorazine 50mg

Take all of those, 1 atypical, 1 beta-blocker, 1 H1 Targeting Anti Histamine, and 1 Neuroleptic with potent chlorogenic properties (oh you will be doing the Thorazine Shuffle, lol). Sometimes quetiapine is not strong enough, haloperidol is a better choice especially by injection-oh yeah.

If your doc will write for it, GHB

I should disclose that even at age 14, back in the 90s, when manic, they would shoot me up with haloperidol, I would laugh, “that is all you got,” every few hours for weeks on end. Yeah, it would get to the point if it did not break, ECT. You may need to dial down the dosage or tailor it. That usually puts me to sleep.