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clusterb

Back into the trenches I return

15 posts in this topic

Hello all,

First time posting, long time reader of posts. I recently just returned to the battle against the beast after a 6-year hiatus. It is a cruel trick the beast played on me, I actually thought I may have been cured, thought possibly I may never get a CH again ……long sigh, this is not how it works though apparently. Little bit of history on me, diagnosed in 98 (age 21) was episodic till 2003, went into chronic (felt chronic as I didn’t have any break for more than a month till about 06, then my episodes changed and did not follow their old pattern. (original time frame April/May-August/September then came and went with no schedule) 2009/2010 after realizing I was massively over using Triptans and prednisone, I stopped them cold (just me and my O2 for 2 weeks) and that is when my remission period began. Remission ended in Jan 17 and I have been in cluster since.  

Current meds: Verapamil 480mg 1xday, O2 for abortive, Frovatriptan sparingly due to rebounds, d3 10000 iu fish oil 3600 mg (need my PCP to start my blood draws to go full bore on this regime, doc told me it wasn’t a good idea, but after providing the regime paperwork I am going forward with this)

I have tried multiple meds in the past, and had a horrible reaction to Nasal Imitrex, it seemed to feed the beast steroids, was one of the worst and longest lasting CHs ever experienced. (anyone else have this issue?)

Meds tried: (probably spelled wrong on some of them) Fioranol, Fiorocet, Amerge, Imitrex, migrianol and multiple other triptans, lithium, Prozac ( a few other mood stabalizers)Capillary constrictors, lidocane up the nose ( neuro suggested that, nothing like a CH with a numb nose)

Working to get my Vitamin M crop working going to try this when they are ready. (can someone with good knowledge of vitamin M PM me I have some questions)

Questions:

Is there a Leading Neurologist for CHs, if so where are they located? (I have had not great success with neuros as I usually know more about CHs than they do, hoping to get into a headache specialist soon)

Has anyone ever had O2 stop working, and then work again?

For long term sufferers, have you ever tried a med that didn’t work for you in the past (years later or after a long remission period) and found any success?

With the legalizing of cannabis in the country is there any reliable studies of any of the cannaboids and or CBD? I have read about CHrs having no success and even causing attacks, but is this due to having to get unknown cannabis from the street and not actual dispensaries.

I have been doing a lot of research on the 5HT receptors and psilocybin and the effect on CHs how many other geeks out there have been doing this and would like to share any medical papers. (I have info to also share)

I have tried to get into medical trials, but since I have Migraines also, and do not know if I am currently episodic or chronic, I am disqualified. I have looked at the links on this page and clinicaltrials.gov, is there any other studies people know of?

I am in it to win it now they have returned, when I was in remission I didn’t keep up with ClusterBusters or Clusterheadaches.com, but I would like to lend any help to anyone needing help and also get into any cause to find better treatment for CHs. Is there any need for volunteer work?

 

I appreciate any and all information provided, I have been back on clusterheadaches.com reading and here reading. Thanks to all of you who provide such good info.

ClusterB  We are all unique in this condition and must struggle to not allow the beast to win!

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18 minutes ago, clusterb said:

Is there a Leading Neurologist for CHs, if so where are they located? (I have had not great success with neuros as I usually know more about CHs than they do, hoping to get into a headache specialist soon)

 

Has anyone ever had O2 stop working, and then work again?

These are the only two questions I can answer with any confidence.  I suppose Dr. Peter Goadsby, at the University of California - San Francisco Medical Center, would be considered a leading neurologist regarding CH.  Whether he knows anything you can't learn here at at ch.com is another question. If you go to the homepage -- clusterbusters.org -- you'll see an item called "Resources" under the "Cluster Headaches" menu item.  There's a list there of doctors recommended by folks with CH.

Yes, some people do find that O2 stops working and then works again.  I don't think anyone can say why, except that at least in some cases it seems that other treatments (D3, busting) seem to cause the O2 to work better.  Is your O2 system optimized -- high-flow regulator; top-quality mask??  If you use the search bar at the top of the page with the words "red neck" you will see a suggested alternative method from Batch, a guy who knows what he's talking about.

Couple of other brief thoughts.  More than a few people find that they need as much as 960 mg/day of verapamil to get results when they are in cycle.   Have you tried melatonin at night (starting at 9mg and going up as needed)?  Energy shot/energy drink at first sign of an attack, as in while you are getting on the oxygen?

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CHF,

Thank you for your response, I have the high flow setup with the cluster mask, just got the mask last month and love it. I tried the energy drink thing years ago, I slammed 3 red bulls at first sign of CH, and did not get any relief, just alot of energy and bloated, was out of O2 at the time so it kind of gave me a bad memory of trying. I have been thinking of trying it again with O2. Do CHrs have issues with higher doses of verapamil? I have always worried about the side affects, but worth giving it a shot to up the dose. I have never tried melatonin at night in cycle, I did try it before as a sleep aid it never quite worked for that. Most of my CHs occur at night, I will try this tonight at 9mg and scale up if needed.

Thank you for your help

ClusterB

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Hi cb...sorry you have to be back...

That was a nicely written intro.... which helps us help you...

Chdaddy beat me to the punch...he usually does...is a gentleman and a scholar...and I agree with what he said...

Couple of thoughts re verapamil: instant release is better than extended release for most (not all) clusterheads..

I needed over 1000 mg/dy when in cycle (480 when out)...minimal side effects but you need to drink a lot

of water and up the fiber to prevent constipation....

I would try taking divided doses throughout the day to keep a constant plasma level ....and I had

some success timing doses approx. 1 hr before expected hits....

Re energy dinks: Red Bull actually has a relatively low level of caffeine and taurine than other brands and is

ridiculously expensive (yur paying for adverts). Try Monster or Wired or any other brand with at least 100 mg

caffeine and at least 1000 mg taurine. Grocery outlet stores carry 16 oz (good for 2 hits) for a buck a can

 

Best

Jon

PS Could somebody lease tell me how to post w/o these extra spaces between lines...I can't find the format settings... 

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jon019 wrote: >> Re energy drinks: Red Bull actually has a relatively low level of caffeine and taurine than other brands and is ridiculously expensive (yur paying for adverts). Try Monster or Wired or any other brand with at least 100 mg caffeine and at least 1000 mg taurine. Grocery outlet stores carry 16 oz (good for 2 hits) for a buck a can. <<<

I feel like I should have some pre-written text about energy shots vs energy drinks, because I don't have the "energy" to give a full statement about them each time I mention them.  Those little 2-ounce shots, such as 5-Hour Energy, actually have more caffeine and taurine (total, not per ounce) than the most of the bigger energy drinks.   Regular Strength 5-Hour has 200 mg of caffeine; Extra Strength has 230.  By comparison, there are many sizes and types of Monster drinks, but even the 16-ounce ones have no more than 160 total mg of caffeine.  So in my view the 5-Hour Energy, which can be chugged very fast, is considerably more likely to be helpful.  An 8-ounce Red Bull has 80mg, so an Extra Strength 5-Hour is the same as three of those.  I'm not advocating for 5-Hour in particular, just saying that many people are surprised by the relative caffeine levels of shots vs. drinks.

jon' -- I copied and pasted your text up above, and it came out with that big line spacing you were mentioning.  When I hit "delete" at the end of each line, it came out as it is above.  So seems that somehow your system is adding carriage returns at the ends of lines. 

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Gents,

Thank you, I have tried 5 hour energy before (not for an attack), gave me an upset stomach, and I thought it was because of all the Vitamin B. I will try this with some water to water it down this time. Does the caffeine abort the CH? I work in a lab and have have full strength caffeine, wonder if that would work, like caffeine pills. I am building a shopping list to go grab, had three mild ones today mainly in the morning. I have these weird ones that happen if I snooze a bit, very strange I wake up feeling fine, then take that last little 10 min snooze and wam CH, ever had that happen? Going to grab some  melatonin and 5 hours at the store, and planning on uping my verapamil dose tonight. I am not sure what kind I get, just has always been Verapamil to me, I will need to investigate this. What are your gents thoughts on Triptans? I am kinda scared of using them unless really needed due to rebounds, how do you guys use yours if you have them?

again thank you for the help, btw I am planning on attending the conference this year, I talked to a lady about a medical trial and she asked if I had ever met anyone who has CHs and I realized I never have, and how much of a shame that is. do you guys attend?

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Thanks (twice!) CHF...I had forgotten the 2 oz "shots"...does that tell you something about my ch status :)

Much easier and faster to use...and easily carried on person! I also used to buy those at the discount store for

around a buck. One note to consider...in my case.....a REALLY cold energy drink...gulped impossibly fast was

always more effective for me.....and the sugar rush helped (tho there is WAY too much sugar in 'em...read the label).

There are sugar free versions...just avoid aspartame (which acts like MSG...for me anyway).

My favorite was "Wired" which had 344 mg caffeine and 3000 mg taurine per 16 oz (hence the 2 hits per can line).

As you can see...I still haven't figured out the extra spacing issue.......the "delete" didna work...

Best

Jon

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Yo,

Caffeine PLUS taurine seems to work better....

Sleep > ch hit is a classic cruelty trigger employed by the beast...

Would advise not to mess with your verapamil dosage without your Docs knowledge and approval.

It is typical and recommended that you get a ECG when upping dosage as verap can affect heart rhythm...

My med of last resort (after O2, energy drink and verap didn't work) is Zomig nasal spray....99% effective

in about 8-10 min timeframe....

Best

Jon

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We have had a couple of people here over the years who used caffeine pills (plus taurine pills).  I have to admit that I don't recall whether they took them when an attack came on -- which seems to me like it would be too slow-acting -- or somehow used them preventively.  Some people do find that caffeine alone -- a strong cup of coffee, for example -- will cut down an attack. 

The conferences always have great content, and hanging with other folks with CH is very moving. (I say this latter part only from observation, since I don't have CH myself -- my daughter does.)

When my daughter was getting three- and four-hour attacks that were not controlled by O2 and energy beverages, triptan injections were a lifesaver (particularly with the split doses, which had a lot fewer immediate side effects).  Since it's now widely believed that triptans can cause rebounds and extend cycles, I suppose it's a tradeoff that each person has to decide about.  

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cannabiods and or CBD

I do have some experiences using CBD and no, it did not make any difference do my shadows or even attacks (very rare in these days, I'm doing quite well) but only a slight better mud.

Pot/Marihuna dispensary quality
Nice tigger 4 sure but depending on the volume smoked. One small joint a day, around 3 days per week would be the maximum for me in order to NOT receive any attacks or shadows.

Concentrates like pure THC/live resin/shatter 

shatter
Not as bad as normal dispensary weed but still a trigger for me

live resin
Much better than normal dispesary weed. I can smoke live resin around 2-3 days a week but would get shadows and would need to pause a few days.

pure THC
Well it will be around 80-90% THC. Is not a trigger to me this is what I'm smoking in these days if I really want to. I made this test and I confirm being able smoking this stuff endlessly. No shadows, no attacks.

As live resin is a concentrate made out of fresh harvested plants (no drying process involved) I guess processes (eq. fermentation, aging...) starting right after harvesting generating those 'things/substance' triggering ch/shadows.

I may be able confirming even further in the next month or so. If THC turns out to be a failure I would come back and report. Also any other issue related to weed, but as stated I need some more time for more detailed investigation.

Probably important: If I get shadows or even an attack based on smoking weed it would be hours after smoking an excess.

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Urs,

Thank you for the input, that is good info. I am reading alot more than I ever have since my CHs have returned. How much CBD have you used when you tried it, and was it smoked or ingested? I have read about people using large amounts of  CBD oil in pill form and having good results for seizures and  other issues, and wondered if anyone had ever tried that for CHs. I am unable to try cannabis due to employment issues, but CBD does not hit on drug tests from what I have read. Very interesting about the pure THC comment, if others can use that for help with sleep without getting CHs that would be very helpful.

Thanks again for the response

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clusterb,

Better I thank you for rising good questions as I only drop my findings upon your questions. 

THC as sleeping aid
Caution! Too much THC will give you the exact reverse effect: difficulties sleeping...
Wears too much means getting THC into the system on a daily base. If I would use weed as sleeping aid I would use it max. 3 times in a row, meaning 3 days. After a pause of at least 2 days, better more.

CBD ingested
I read about positiv results coming out of using CBD but unfortunately not with our beast.
I ingested huge amounts. 30 to 45 drops per day of the most potent I could buy on the market. To me it caused severe excess of gastric liquid in the stomach eventually being responsible for a major disaster...
Using CBD I recommend watching closely acid level. For myself there is far not enough data available in order to prove any benefit that may come out of using CBD/CBA/THC and so fort. As I'm a long time weed user (>30 years permanent pot smoking (others have a beer after work or two. I had my joints...)) if anything within this beautiful plant would have a potential curing or preventing ch, I never ever should have got ch. 90% of the time I had access to 1th quality hash/pot.
Also I'm not a fan of the so called 'Rick Simpsons Hemp Oil' alleged being able curing cancer. I just do not believe in it as there are far away any meaningful results one may relate on. But who knows. Eventually at a certain point of time researchers are able to come up with reliable results.

Never the less, our DNA differs. Person A may get positive results out of something wears person B does not get any. I would say it is very save testing the whole family CBD/THC and so fort but one may not expect huge results.
The only thing I've got out of CBD is a slight up, not even worth as antidepressant, thats it. 

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Hi cb!

Verapamil: The extended release should say 'ER' on the bottle or script. You could ask your doctors office to check for you. The Short Acting Verap worked much better for me. My low blood pressure meant low dose for me - 240mg/day. I got my neuro to switch to that over ER and did a lot better. One in the am, one before bed, and the last when I was up with the beast at night. Almost all of my hits are at night.

Since you are taking your verap. once a day, I strongly suspect it is ER.

Caffeine: Energy drinks and shots make me sick. So, I often used V8 Energy with caffeine in it. Then I bought some caffeine power instead. At first I tried measuring it out. Very tedious. Now I just dip a damp finger in a small bottle of powder and chase it with cold juice while heading for the O2. So yes, straight caffeine works for me. :) It also helps with shadows.

O2: Yes, I have had it fail. Two nights ago actually. It would kill the hit and about 5 minutes in to post breathing, I would get another hit! This happened four times. Had to get a new bottle yesterday after that fiasco. :angry: Last night it worked fine.

We have a list of recommended doctors at the top of this section I believe.

Go to the Clusterbuster Files section. You will find a lot of info there. After the first 20 treads or so are at least two tutorials on growing.

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Spiny,

Thank you much for the info awoke this morning into a battle with a K8, have not tried the caffien yet, need to put some by the bed side. My doc is a gp and after all this knowledge that I have found here, I need to go back in to the doc and drop some knowledge to her, and figure out my verapamil and get some blood work done.

Thanks for all the info

CB

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I can tell you with 99% certainty that your blood test will show that you are far below the D level that is required to affect CH.  With 81.3% certainty, I can say that you're below even the medical standard level for D.  It would be wrong for me to advise you to start the "loading" process that Batch describes, but I guess I can suggest that you seriously consider doing that.  If you can't get that blood test soon from your gp, you can pay something like $45 to get an online prescription to have a D test from a local blood lab.

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