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JavanHead

Hey All - CH Going on 40 days now... Just wanted to say Hello!

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Hey all, this is my first post. I've done a bit of lurking and reading and thought I'd drop in and say hi and see if I could get any more information, or if my situation could help anyone.

Introduction - I'm a 31 year old African American Male from Ohio. I enjoy whitewater kayaking, videogames and running with my pups. And travel, and fun awesome things like that. I smoke marijuana and cigarettes - about 7-8 cigs a day. 

Anyways, near the end of June I began experiencing earth-shattering headaches. I know I mentioned I'm a smoker, but other than that I'm generally pretty healthy. I paddle all of the time, run my pups 365 days a year and consider myself a very strong person. I never got headaches regularly before - EVER (well, other than the time I quit smoking and I got bad headaches for a week). And now I was getting them, every single day..multiple times a day! Madness! I took excedrin for them, but after taking 2,4-8 excedrin pills a day for a week I just couldn't do it anymore so July 5th I went to the ER ( I don't have insurance).

At that point I thought I honestly had lyme disease. As I mentioned, I run my dogs every single day; and through the woods next to my house through countless amounts of brush, wood, trees, trails, mud water, you name it. I've been known to pull a tick off of them, and myself from time to time. The ER doctor agreed (sure! What else were they going to do!?), sent me home with Doxycycline - I took it everyday for a week, and while I think there was 1 day that I did not get an earth-shattering headache (unable to move, eye bulging, watering, crying etc) - the doxy was not working.

 

I then scheduled another doctors appointment for about a week out and between the end of the doxy and the actual doctors appt, I acquired some mushrooms because I heard they could help CH suffers (I was beginning to "warm up" to the idea of having CH). So I took some mushrooms at my girlfriends new place, the ceiling exploded due to a leaky water pipe which it a whole nother story in itself; and THEN I got a crippling headache WHILE on the fungus! That was not fun, but I'll tell you it - it sure was interesting - imagining the 3 "good" quadrants of my brain trying to fix or "heal" the 1 "bad" quadrant. Ha.

But it was around this time that I figured out that Excredrin Tension w/ Caffeine but w/o the Aspirin aborted my headaches. So I quickly chewed on a pill and about 45 minutes later the CH was gone. It was at that moment that I lost faith in the mushrooms; which perturbed and upset me greatly because I am actually quite fond of mm and was looking forward to consuming them more regularly.

Anyhoot - as mentioned I was beginning to figure out that excredrin tension, and more importantly - the Caffeine was aborting my headaches and I've come to find out that it keeps them at bay. Meaning - if I ingest caffeine throughout the day - I will not have a headache. Which is great..but it makes me a bit jittery; and I need to sleep at night. And more often than not the CH rears its ugly head...at night. So I'm sure you can imagine and emphasize how counter-productive and depressing it is to take caffeine, to sleep. I'm still trying to wrap my head around it.

So then I end up smoking more marijuana and sometimes taking melatonin; and honestly I don't want to do either.

Thankfully I am happy to report that I do work from home, own my own internet marketing company and have a few partners that rely on me; but are very supportive of this newfound condition. But - I am sad to report that the overall situation has left me a wee bit depressed, PTSD'ish, always wondering when the next headache is going to pop, and scattered overall - including my sleeping schedule being absolutely F*cked. I was also getting more into exercising but with all of the ups and downs and poor eating habits, I haven't found the time!.


Oh, and did I mention that the actual doctors appt prescribed prednisone - which WORKED! on Day 3 through 6 of taking the pills, I did NOT have a headache and it was fricking amazing. But on day 7 one came and they've been making their way back even since. Oh and then I go the flu a few days after getting off the prednisone pills - perhaps due to my lowered immune system.

 

Anyhow! Sorry for my incessant rambling, probably the caffeine, and/or the marijuna :) . I actually feel a lingering headache now and it's close to midnight (my bedtime), but I'll be drinking 60-80 MG of caffeine OR taking an excedrin pill before bed - and be up to about 2am!


Thanks for listening and I seriously applaud the bravery and strength it takes for you anyone to go through this condition. I have not been formally diagnosed (I have another doc appt in 2 days), but I am 99% positive CH is what I have...

Questions -

1. Ideas thoughts about the caffeine usage to abort/keep the headaches at bay? Any types of caffeine that DON'T keep one awake? Lol

2. I've currently been in my "cycle" (sorry, not 100% on the jargon) for about 5 weeks. From what I'm reading they typically last for about 6 weeks and then can go away for YEARS. That's true right!? Man I'm really really really hoping this to be over in a week. I think they are lessening as far as how many headaches I'll have throughout the day, but again I can't really tell because I'm drinking caffeine every day now. (I used to drink maybe a cup of coffee every other day, very semi-regularly).

3. Ideas/thoughts on the mushrooms? I've read about having a more strict schedule w/ them as far as taking them 5 days apart 4 times in a row, etc. Perhaps this could yield better results? I need to get organized...

4. I've read quite a few things on the internet, but haven't really tried anything too extensively besides the caffeine and more exercise. I have read this https://clusterbusters.org/treatments-options-choices-and-more/anecdotal-non-prescription-cluster-help/ and a bit about the D3 method which I AM curious about. I am definitely NOT crazy about taking pharmaceutical drugs or supplements, even tylenol and would love to solve this issue naturally if possible..  I've also read about the water method..seems kinda crazy, maybe I'll try it..


THANK YOU ANYONE AND EVERYONE. KEEP PUSHING ON.

 

Note: I've decided to attach a silly picture of me in my kayak, to put a face to the crazy antics mentioned above. Lol.

javan3.jpg

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Hey Javan!

Go to the Clusterbuster Files section of the board and read, read, read.  You will get the needed info for the D3 Regimen and much needed info on how to take MM. D3 vitamins are cheap and easy to acquire. The reduction in pain is pretty darn dramatic and some have gone Pain Free just using the D3 Vitamins.

Caffeine is often used at the very beginning of a hit. Often on the way to huff some O2. O2 will be your best friend if used properly. Many people use Energy Shots for their hits. Smaller and all that. Caffeine is recommended. Coffee can work too. Very cold seems to be best for most. Down at the very beginning of a hit.

Pred works too, but you can't take it all the time. Very bad for your hips and other stuff. But it will provide a nice break for a few days on occasion. As you taper down and reach say 10 or 20mg/day, they will return. It is often used as a bridging med to get you thru until something like Verapamil kicks in.

Read and ask questions. There are a lot of people here who will help you learn the process.

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Javan, it is possible but not likely that you'll be attack free for some number of years after this episode ends.  It's possible that your cycle will only last six weeks, but there is no "normal" or "typical."  You really need to not assume that you won't get hit again in six months or a year, or even that this cycle won't go on another six weeks, and be ready. The effectiveness of simple caffeine typically lessens over the years for people with CH. 

I strongly recommend that you read about the D3 regimen and start it.  http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

As spiny says, do what you can to get oxygen -- the best abortive there is, with no side effects. A doctor can -- but, for crazy reasons, often won't -- give you a prescription. Without insurance, your best route might be welding oxygen, for which you don't need a prescription.

Your mushroom experiment wasn't unusual. People can get attacks while taking them. Most people use them to stop a cycle or try to prevent cycles through "maintenance dosing."  5 days apart.

Some people are finding CBD oil to be very effective. There's a search bar at the top right of each page.  Type in CBD to find that content.  Most recently, SwiftLaw posted that it has helped him tremendously.

Read in the ClusterBuster Files section. Look at the Triggers document there.

Keep asking.

Edited by CHfather

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Good stuff from spiny and CHf...I'll try not to be redundant…………..apologies for same

First things first.....get a diagnosis....there are conditions that can mimic CH...they need to be ruled out....and then:

YUP!...Oxygen oxygen, oxygen.....not only changed my life...probably saved it. Meets all the criteria for safety, effectiveness, relative cost, ease of use and lack of side effects....the FIRST time you feel that hit drain like water, only faster than ever before.....there WILL be tears...and not the kind you are used to. Any physician who is reluctant or refusing  to prescribe the most well known and medically accepted therapy  for CH  is the WRONG physician. You have GOT to find a headache specialist...and not just a neuro.....because even they get minimal training in headache. It is critical for support,  updated treatment knowledge, advocacy with insurance and work, and peace of mind that at least ya got a chance to manage the beast. 

Short version of a long story: I too got hit at night (1per hr for 8 hrs). Set up an O2 tank right next to bed, hit it at 15-25 liters per minute the second I woke up...remained calm, lights out, eyes closed, no thrashing or cursing or angst, no other thoughts than "breath"....never fully awake. Usually worked within 5-10 minutes...then back to sleep. Would get 4-6 hrs of sleep per night and be grateful for that...…….

Caffeine can be quite effective.....but many find that in the form of energy drinks is best (minimum 100 mg caffeine/serving and 1500 mg taurine). The taurine boosts the effectiveness....you might say like a turbocharger. Really COLD and really FAST at the first sign of a hit was best for me. I buy at Dollar and discount grocery stores ($1 or less per can) whatever is the cheapest version with the requisite contents. 2 oz "5 hour energy" types are oh-so-portable and easy to use. There are sugar free versions (cuz, dayum, most got WAY too much sugar)...just be careful it's NOT sweetened with aspartame...which is a vaso-dilator trigger similar to MSG. And keep in mind that for some...like me...low blood sugar is a trigger (I carry hard candies). I'd try various forms.

My experience was that caffeine/energy drink OUTSIDE of a hit was actually a trigger for hit(s) later down the line. I only used to abort a hit or attempt to forestall an expected hit...and avoided at all other times. The body is a remarkable 'stasis' machine...if will get used to whatever caffeine level you typically ingest and mediate the effects. What you want is an unexpected "caffeine bomb" to get the desired vaso-constriction effects. I totally get your taking caffeine before going to bed...I could do that too and still sleep...it amused me. 

Melatonin (or Benadryl) are effective for lots of us in getting through the night..... not sure what your concerns are there. Divided opinions on MJ....for many yrs the "community" generally discouraged use...based I think on the "but it's a vasoldilator" reasoning. More recently I've seen increasing reports of benefit for CH.....so seems very much an individual thing. Perhaps try different strains and various THC and CBD levels. Heck, even if the effectiveness is because of anxiety relief vs physiological effect...who cares!?

Be REAL CAREFUL with the Excedrin...it can tear your stomach up....and is dangerous long term.  Many find that it is beneficial (on occasion) for shadows (mini hits or undeveloped hits)……...

How you are able to smoke only 7-8 cigs/day is mind boggling to me.....I had to cold turkey...and all it would take for me to be hooked again would be ONE....Never could see any difference in CH whether I smoked or not (quit many times)...

As spiny said...prednisone (or methyl prednisolone) is an effective bridge med until the preventive kicks in (1-2 weeks). Beyond that the side effects are NASTY. For many yrs I used verapamil...of the 20+ meds tried over the yrs this was the most effective (70%) with the least side effects. 480 mg/dy in divided doses of immediate release version seems to be the reported sweet spot. In high cycle I went over 1000 mg/dy...…..

Cycles are a strange thing....for 23 yrs my cycle was 6-8 weeks on and 6-8 weeks off....with a pattern of hits like a photocopy. Then turned chronic ...which is not near as bad as I had anticipated. No one can answer your question on what to expect with your cycle...it's gonna be what its gonna be...which why you are here so you can be prepared for whichever pitch the beast bitch throws......

Re D3...I'd dive in the deep end on that one. Supplements that are cheap, easy, safe, and good for you whether you have CH or not. MANY success stories!!!

Best

Jon

PS: My brother's kayak...he's a country mouse...with a mountain cabin...Ima city mouse ….but a tall one.... so he bought a loooooong one for me (and his dog) to use ...cuz he loves us! I think kayaking is the best non motor boat method of movement...you can quietly go really fast with a minimum of effort....or real slow and take in the sights

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Forgot to add...for break through hits when O2, caffeine, and meds failed (no meds now used)...I use Zomig nasal spray (5 mg). Criminally expensive (even WITH insurance) but FAST and 99% effective for me...w/o the reported side effects from another triptan: sumatriptan injections (which are also fast but believed by some to promote rebound headaches). You may be offered tablets of same...which are generally useless for aborts because they take far too long.....

Best

Jon

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Hey thanks everybody for the support I really really appreciate it. Some really great ideas here and I'm going to set aside some time today to read up on the D3 regimen and see if it's something that can help me. I'm 100% up to try it either way.

Also, Jon the Zomig sounds pretty righteous. You use that exclusively now? Does it just "bust" the headache or keep them away for any sort of time ?

As I've mentioned I've been "medicating" with caffeine mostly - got some sugar free red bulls yesterday and a few starbucks coffee shots. Drank one when I woke up at noon, and then drank unsweetened iced tea all throughout the day. I honestly felt great until about 10pm when I felt a bad headache coming on. I then drank half a red bull and a little bit of coffee and the pain dissipated within 20 minutes or so, which was good - but then I was up till 5am! I then took 1 tablet of excedrin tension and went to bed until about 11am.

 

Real quick - I know that pills can tear your stomach up, but the excedrin tension that ONLY contains acetaminophen and caffeine - that's not as bad for your tummy as the regular excedrin right ?

 

The O2 sounds interesting and I would be willing to try, I'm just not sure if I can keep that up lifelong as I try to be as active as I can. I guess I could take it with me camping and my long car drives but it seems like a lot. But this condition is a whole lot and I am willing to do anything to seek relief ! 

Also a friend of mine did give me a few topamax pills and a sumatriptran injection box, and I havent taken any of them. His wife has MS and said it helps with her headaches heavily. Thing is, I've read about the effects and seems they can be pretty severe. Obviously I'm the kind of guy that would rather smoke a joint, flap my arms and pray the pain goes away but...perhaps I'll shoot one in my forehead tonight ! Joking of course ;)

Also a doctor friend of mine had said this when I was texting him today - 

 

"Sounds like your symptoms fall into a diagnostic group of diseases called Trigeminal Autonomic Cephalalgias (TACs).The five diagnoses in the group are:
1. Cluster
2. Paroxysmal hemicrania
3. SUNCT
4. SUNA
5. Hemicrania continua

Even if the symptoms are textbook and diagnosis (usually by a neurologist) is made, treatment can be difficult to get “right”

Another diagnosis in the group is called hemicrania continua and responds to a drug called indonethacin (basically ibuprofen) - also prescription

Well if we’re going with CH - which I think is right - it seems that the best place to start is a triptan"

 

So I'll be researching that information today as well. But topamax and sumatriptan are...triptans right?

 

Anyhow - just wanted to give you guys an update, thank you again for all of the kind and heartfelt replies! I am in the doctors office now (normal doc not neurologist or headache specialist), and will relay all of this information to her as well and let you know what they think !

 

Have a great day all and be well! 

 

Ps. Will be researching CBD oil and the poster you mentioned thank you for that!

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Short note - The doc prescribed me verapamil. I am supposed to take one 240mg pill at night, thought I am thinking of taking one now... I don't have a headache but I am eager to measure it's effectiveness and eager to get off caffeine...

Thoughts?

 

She had also said that I should visit a neurologist and gave me the listing of a headache specialist in the area that I will surely check out. Also said I should visit a dentist as it's been a few years. I've had my jaw broken about 10 years ago, and I've read and heard some things about TMJ and cluster headaches as well...although I have never been diagnosed with TMJ; though  I do clench a bit at nighttime.

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3 hours ago, JavanHead said:

Short note - The doc prescribed me verapamil. I am supposed to take one 240mg pill at night, thought I am thinking of taking one now... I don't have a headache but I am eager to measure it's effectiveness and eager to get off caffeine...

Thoughts?

 

She had also said that I should visit a neurologist and gave me the listing of a headache specialist in the area that I will surely check out. Also said I should visit a dentist as it's been a few years. I've had my jaw broken about 10 years ago, and I've read and heard some things about TMJ and cluster headaches as well...although I have never been diagnosed with TMJ; though  I do clench a bit at nighttime.

This one first.....I have to collect my thoughts for the previous....

Sounds good...typical starting verapamil dosage is 120-240 mg....with a slow ramp up to find the 'effective" dose if necessary (as previous...480 the reported 'sweet spot"....but everyone different.)  Is it immediate release or "extended release? Both have been reported to work...with more finding the immediate version more efficacious. Also typical to do an ECG to start and any time dosage increased substantially as verap can affect heart rhythm.  If a problem...which is NOT typical...reducing or eliminating reverses the problem. Do NOT expect immediate relief...at best it will be 10-14 days for benefit...and then a dosage increase if not...………..BEFORE giving up!!!

Always good idea to check for TMJ....not reported to be related to CH...but bad stuff especially with teeth grinding. I've used a bite-guard every night for 30 years since I grind my teeth (they're ALL flat). This preceded CH by many years....and it has never seemed related to CH for me...

Best

Jon

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Thanks Jon much appreciated. Looking at the bottle they say "Verapamil 240MG ER Tab GLEN - Generic for CALAN SR.

So that ER probably does mean they are extended release, yeah? Should I break them in half or crush them up? Not recomennding to do anything silly with them, but perhaps if I chewed it instead of swallow, would it hit me quicker?


And thanks for the heads up as far as not expecting anything immediate. I have 30 of these bad boys so we'll see if I notice anything.. Not sure if I'll be going in for a ECG beforehand, but I'll keep mind of my heart over the next few, for sure. I hear if that goes, I go too!

 

ps. We oughta meet up at the cabin one day! I also believe that paddling is the best form of non-motor travel! Have you ever done any whitewater?

 

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Thanks Jon much appreciated. Looking at the bottle they say "Verapamil 240MG ER Tab GLEN - Generic for CALAN SR.

So that ER probably does mean they are extended release, yeah? Should I break them in half or crush them up? Not recomennding to do anything silly with them, but perhaps if I chewed it instead of swallow, would it hit me quicker?

Yup...those be "extended release". And NO NO NO...a THOUSAND times NO! Do NOT screw with medicine instructions....I am a professional patient...but I aint no damn Doc. These work for some...and if they don't...a higher dose of immediate release is damn skippy worth a try. Get thee  an "headache specialist" ...they will know FAR more than I...

And thanks for the heads up as far as not expecting anything immediate. I have 30 of these bad boys so we'll see if I notice anything.. Not sure if I'll be going in for a ECG beforehand, but I'll keep mind of my heart over the next few, for sure. I hear if that goes, I go too!

There aint a clusterhead alive who doesn't want this shit to STOP NOW! We get it! But...this could be a long slog...hope for the best...prepare for the worst (and we can help with that ;) )

ps. We oughta meet up at the cabin one day! I also believe that paddling is the best form of non-motor travel! Have you ever done any whitewater? 

Pete...my brother (and me)...would like that...but I'm kinda limited these days.  No whitewater...it was a dream. Best memories with a paddle:

once passed a group of kayakers on the beach...about 30!...we circled around until we figured: a celebration of life for a friend passed. Didn't know who...but I almost cried...great send off for a friend!!

...another time...middle of a lake....it started to rain...only the drops were 10' apart....PLOP......PLOP.....PLOP.....PLOP. It was hilarious. I'm from Seattle...the rain is like a mist...you DON'T hear individual drops....bwaaaaaaaaaaaaaaaaaaaaa

Best

Jon

 

 

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Javan, responses to a few of your questions/comments.

Topamax is not a triptan.

Overall, there are two approaches to dealing with CH -- prevention and aborting.  Verapamil, for example, is a preventive. It won't stop an immediate attack; it's meant to reduce or eliminate attacks over the longer run.  D3 is a preventive regimen.  Abortives are meant to stop an individual attack, or at least reduce its severity.  Your caffeine is an abortive, but it won't prevent attacks (no matter what you think).  Oxygen is an abortive; triptans are abortives. The zolmig Jon' mentioned is a triptan--zolmitriptan.  Imitrex is a triptan--sumatriptan.  

The word "busting" is used here to refer to a specific preventive method, which is taking psychedelic substances.  Read about busting in the numbered files in the Files section. 

You only use oxygen to stop an attack; it's not a preventive.  You only use it when you're having an attack. People have developed neat ways to take small cylinders with them in backpacks.

It always makes sense to me to try indomethacin for anything that seems like it might be a hemicrania (your notes from your doctor friend).  This rarely happens; again, I don't know why doctors don't look for the simplest explanation first.  Generally, indomethacin only treats hemicranias, not CH, so it's helpful for diagnosis.

 

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Hey Jon - 

I understand, I will not screw with the dosage and/or pill! Lol. 

And yes, I definitely want to stop it. Had one last night and one today - both succesfully aborted with caffeine, though todays took about an hour to abort; which sucked; but it only got up to about 5/10 on the cluster scale (which I consider about 9/10 on a normal headache scale - could have gotten MUCH worse!) but I caught it a bit late becuase I was napping.


And hey man, it's never too late to get out there! We've got a 81 year old guy in our group with one eye and he paddles class V and waterfalls like it's his job! Also have a few 60-70 year old paddlers that picked up WW in the past few years/months and absolutely love it.

And that is such a beautiful story about the celebratiion of life. I've heard of similar. I've never been a part of one, but I would gladly love to be a part of one - if it were for my headaches. As in, if they were killed off! Ha.

CHFather - thank you for the answers and detailed information, much appreciate it! Learning the jargon little bit little and doing more reseach everyday and learning lots!

And I know everyone has told me that caffeine wont prevent them but...I have noticed that if I injest caffeeine ALL throughout the day, either caffeine or tea, I do not get them. I notice that if I take excredrin with caffeine before I sleep - I will not get a headache in the middle of the night. Is this preferred? NO! Not by a longshot, but it has worked for me. But, seriously it is not preferred at all. I'm already a pretty energetic person and the days when I am artificially sped up; I feel like I',m on some drug that I'm not supposed to be on and my body is going in 3 different directions. But, oftentimes; it can be better than having 1-2 clusters a day..

Anyhow - I will Definitley look up the indomethacin and ask my doctor about it.

Thank you again and have a great day everyone :)

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Also, Jon the Zomig sounds pretty righteous. You use that exclusively now? Does it just "bust" the headache or keep them away for any sort of time

Last resort after all else fails....for me effective nearly every time, no noticeable side effects, typically got an 18 hr "free time", no rebounds. DAMNED expensive tho (even with insurance). In my case much better all around than sumatriptan. If you try either BE SURE to research manufacturer coupons and other pharmacy discount options...

Real quick - I know that pills can tear your stomach up, but the excedrin tension that ONLY contains acetaminophen and caffeine - that's not as bad for your tummy as the regular excedrin right ?

Correct...just be sure not to mix with alcohol or exceed listed dosages....can be hard on the liver. Do a google search....

The O2 sounds interesting and I would be willing to try, I'm just not sure if I can keep that up lifelong as I try to be as active as I can. I guess I could take it with me camping and my long car drives but it seems like a lot. But this condition is a whole lot and I am willing to do anything to seek relief

When...not IF you go this route... you WILL  curse the delay and regret all the pain that COULD have been avoided. I have trouble finding the words how important this is!!! Without O2 I could not have worked, could not have participated in life, and would have been insane or WORSE. These are called suicide headaches for a damn good reason. There is even one doc who asks patients if they have at least contemplated suicide...and if they say no...then they probably don't have CH.....

I kept an e-tank (quite portable with a caddy... but large enough to be useful) in my office, one in the car (strapped down) and a couple of E's or M's at home. When travelling I arranged for E tanks pickup from the local O2 shop (I used Lincare...LOTS of locations)….yup...even on the way to a 7000' mountain cabin. The only problem I ever had when travelling was explaining the O2 regulator to TSA. They would make me explain EXACTLY what it was and how it was used. I was happy to comply. Oddly, they never even looked at the Zomig nasal sprays...which look a lot like a bullet!

Also a friend of mine did give me a few topamax pills and a sumatriptran injection box, and I havent taken any of them. His wife has MS and said it helps with her headaches heavily. Thing is, I've read about the effects and seems they can be pretty severe. Obviously I'm the kind of guy that would rather smoke a joint, flap my arms and pray the pain goes away but...perhaps I'll shoot one in my forehead tonight ! Joking of course ;)

Topomax (an anti-epileptic supposedly useful for migraine and sometimes CH) is known by many a clusterhead as "dopeymax"….as the side effects include making you STOOOPID....worst side effects of any med I ever tried. Kind of a med of last resort when nothing else works IMHO. IF it's gonna work it will take a while...so a one off pop is worthless. Wait for a doc to give an ok before using suma...it can be harsh and can be counter indicated depending on your overall health situation....

Also a doctor friend of mine had said this when I was texting him today - 

"Sounds like your symptoms fall into a diagnostic group of diseases called Trigeminal Autonomic Cephalalgias (TACs).The five diagnoses in the group are:

1. Cluster
2. Paroxysmal hemicrania
3. SUNCT
4. SUNA
5. Hemicrania continua

Well...ok...those are all nasty...which is why you need a headache specialist......

Even if the symptoms are textbook and diagnosis (usually by a neurologist) is made, treatment can be difficult to get “right”

Yeah...soes a Class IV or V difficult....ya gonna sit on the bank and watch the 81 yr old guy flip you off on the way by...or get in the game? ;) 

Another diagnosis in the group is called hemicrania continua and responds to a drug called indonethacin (basically ibuprofen) - also prescription

If ya got HC...indomethacin is reportedly quite effective...usually doesn't do squat for CH but it's one way to eliminate HC in diagnosing...

Well if we’re going with CH - which I think is right - it seems that the best place to start is a triptan"

Yeah....as an emergency abort....it's not something to rely on (expensive, limited allowed usage, potential rebounds,  side effects).  I'd try the D3 regimen in the meantime....AND some smartass fuzzface has a lot of nice things to say about O2 (relatively cheap, easy, quick, NO SIDE EFFECTS) ...just sayin'....

BTW: Can I get an AMEN on O2 Brothers and Sisters????

Best

Jon

 

Edited by jon019

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I wrote out a rather long message, but for some reason it is not letting me post it :(

This is the error I keep getting - I connected to both applebees wifi and my hotspot on my phone, and I keep getting the same error !

 

403 Forbidden
A potentially unsafe operation has been detected in your request to this site.

Generated by Wordfence at Thu, 9 Aug 2018 21:25:58 GMT.
Your computer's time: Thu, 09 Aug 2018 21:25:57 GMT.

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I keep trying to post it in chunks, but it wont let me do that either :(

Anyone have any ideas why it won't let me post the long message?

I guess I could upload a screenshot of it..

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Javan, how many people have to tell you that if you have CH, oxygen will save your life?  I have no idea what you're talking about, and it's really frustrating me.  You inhale O2 at the first sign of an attack and something like 10-15 minutes later, most of the time, you can go on with your day.

Triptans will f you up in the long run.  Steroids will double f you up in the long run.  Caffeine is not going to be effective in the long run, and you can't live a lifestyle of drinking caffeine all day. It will f you up (and, no matter what you think, it doesn't help, if it is CH that you have).  ONLY oxygen will abort your attacks without eventually fing you up in some way.  You're not "hooked up to an oxygen tank all day" -- you use it when you have an attack.  You can make a nice portable backpack and take some with you pretty much anywhere.  If you have psychological issues about using O2, I'd recommend seeing a shrink.  You don't even have to use a mask if that bothers you; you can breathe through a tube so your face isn't covered.  You CANNOT get by without O2 in the long run without a huge amount of completely unnecessary suffering. They aren't called suicide headaches for nothing. You can't smoke while using O2. Your dog hair and other messes and smoking pot aren't going to have any effect on your O2.  

And, to repeat what I said yesterday, Zomig, the triptan, is an abortive, as is Imitrex, which is the injectable triptan.  They're not preventives. They are very powerful stuff that you would only subject your body to because you want to end an attack.  You can't take them all day, or take them as though they were preventives, because you'd be killing yourself, and you'd also be making each subsequent headache worse and each cycle longer.  There is a reason things are done as they are. 

I admire your truthfulness and your inquisitive spirit and your complete determination to remain as "normal" as possible.  CH sucks, big time. Improperly treated, it has destroyed many, many lives.  Your passions for life will see you through, and there are very promising treatments on the horizon, so that you almost certainly won't have to go through what people before you have endured. The founder of this site started taking psychedelics because for him, it was try that completely untested idea or commit suicide.  Most people here who take MM or other psychedelics hate the experience.  But they do it because it's the best thing they've found, with the fewest side effects -- for prevention. But they all, or virtually all, have O2 for abortion.  I'm not recommending that you take psychedelics; I'm trying to help you see what CH can become if you don't deal with it sensibly. Now the D3 regimen is working pretty big wonders for hundreds of people and, as I say, it's possible that a very effective preventive, Aimovig, might be very helpful.  Don't just read about the D3 regimen, do it.  The guy who created it is an amazing person who will help you in any way he can, and he's there for you pretty much 24/7.  And get the damn O2.

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Hey Javan,

I've sent you a message on the anti-inflammatory regimen CH preventative treatment protocol with at least 10,000 IU/day vitamin D3 plus the cofactors... Please let me know if you received it.

Take care,

V/R, Batch

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I guess I should confess the personal source of my frustration, beyond what we have heard from scores of people here and at the FB group.  My daughter didn't get good advice about her CH when she was just about Javan's age.  Her supposedly top-notch big-city neurologist finally prescribed O2 after years of feeding my daughter crap drugs, having first misdiagnosed her CH for years as trigeminal neuralgia.  But that neurologist prescribed a concentrator and cannula, which of course had no effect.  And we hadn't yet discovered the great people at this forum. So I sat with my daughter on nights as she suffered through multi-hour attacks with nothing to treat them, believing that oxygen didn't work for her.  After I found ClusterBusters, I tried to get welding O2 for her and failed miserably and foolishly.  I finally contacted her medical O2 supplier and demanded cylinders and a mask. It was hard to convince them that that was what she needed, but finally I did.  My daughter didn't believe it would help her, and was very resistant to the things I was doing to make all this happen -- even angry at me for insisting. And I will never forget the moment when she did try it and the pain melted away. Jon' has talked about tears of happiness; for my daughter it was giggles; it was me who was crying from happiness.  To be honest, oxygen mostly still works very well for her but sometimes it doesn't, but God only knows where she (or I) would have been without it.  

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The first time I had O2 was in a hospital with a crap mask and who knows what flow rate. The mask let in room air on the sides and they had it strapped to my face. When I told them that my cluster was getting worse they moved the mask from my face and put it over my ear, I guess so I could get more room air?  Well I broke the mask off and that was the end of my O2 until I found this site. I read all about the ways others here use it and now have the correct setup and mask. 

I found it was harder for me to get a oxygen company to deliver it to my house then it was for a doctor to give me a script for it. After a bunch of weeks calling and driving to O2 distributors and yelling and fighting with them I finally have a company that will deliver tanks to me house the next day. I do not use insurance for it because it would end up being about twice the price so I just pay for it out of pocket.  

Getting off the triptans was a long hard painful weekend but it was well worth it. I went from taking 3-4 shots and or pills to maybe one a month if I am getting hit bad for several days. I just know in the back of my mind that I am better off without them in the long run. I am not saying never take a triptan for a abortive because I have been crushed for 3 hours with a kip 10 before and know how that feels, I am just saying the O2 has aborted just as fast as a injectable and faster then the many pills I have taken.   

 

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