New to the forum.

[skibo]

Hi there, I'm from Chile and new to this forum.

Less than a year ago I started having terrible headaches (an understatement). At first I thought it was my old migraine that came back and took cafergot and paracetamol, to no avail. Then the headaches stopped, then came back about 3 months later.

This time I thought it might be sinusitis, so I self-medicated with pseudo-ephedrine (not helpful at all, on the contrary) and changed paracetamol to naproxen, and finally went to an otorhinolaryngologist (ORL). He told me I had some type of rhinitis (but he didn't know which sort) and gave me a gluticorticoid (budesonide) nasal spray which helped with frequency and intensity, but only partially. I must admit though that the first time with budesonide (at the peak of the cycle) was miraculous, though not 100% effective. I still had a lot of what you call "shadows", basically day in and day out. In my case a strange vascular sensation at the pain focus point --between the nose and eye, left side only-- and occasional "stabs" of very bearable pain. I wasn't satisfied with his diagnosis so I went to another ORL which diagnosed me with CH and gave me some calcium channel blockers and told me to continue taking the gluticorticoid nasal spray for a month. This combination also helped, further reducing the intensity of the attacks, but the shadows and the attacks themselves (although less frequent and severe) were still there. We also discarded the allergic rhinitis theory with a prick test. But by then the second cycle was coming to an end. The important thing is that I had a diagnosis that matched my symptoms and that I believe to be correct, and that in itself is a great relief. Not having to wonder if you have a brain tumor, or if an artery in your skull will explode and what not.

Then, a couple of weeks ago the shadows started again. Once I almost thought I was having a coronary incident in my nose, like I had palpitations and tachycardia or something. I've sometimes even felt like something breaking and making weird noises in there (not painful though). Then I also had an attack, admittedly I trigerred my most important triggers (alcohol and alternating between hot and cold environments) and then another unwarranted one, with medication (only calcium channel blockers at this point). By now I knew that the thing was just getting started again... and obviously anxious and scared. I had already read quite a bit about CH on the net and come across the hallucinogenic treatment, so I decided to look into it. Read on how to dose and drug interactions, and being rather impulsive, a bit desperate, and also having had experience with mushrooms, LSD, mescaline and other substances in the past, decided to procure some mushrooms. Took 1/4 of a "recreation dose", no visuals or anything, just some giggling, and then dosed again five days later. I haven't had an attack since, and although I still have shadows the whole thing seems to be fizzling away. So apparently the treatment is working, but I think it's still too early to really tell.

I have several questions, maybe you people out there would be kind enough to answer some of them.

1. Do the symptoms sound familiar to you? I had never heard of CH before. The symptoms seem to match. No ptosis or miosis that I've noticed though, but I do get a congested nose on the side of the pain during attacks. The diagnosis isn't really very encouraging, so I guess I'm still hopeful that it might be something else. I'm curious in particular about what you mean by shadows, if it matches what I described.

2. Do you recommend I stop taking the calcium channel blocker if I continue to try to bust the headache with psilocybin? I didn't see it listed under the drugs that I absolutely must stop taking, and I was scarred that it might make things worse if I stopped taking it. Should I continue using psilocybin until the shadows are completely gone?

3. Do you have other recommendations for keeping this thing under control? I've stopped drinking altogether, been smoking significantly less, try to keep an orderly sleep regimen among other things. Haven't experimented with my diet or exercise. Are there any foods that might be triggers? Is it worthwhile doing an inclusion/exclusion diet to try to identify them? The ORL said I should avoid anything that messes up vasodilation/constriction which would include coffee. How true, in your experience, is this? I've found that coffee actually helps me. At one point, when I still didn't have a diagnosis, I found myself drinking large amounts of coffee after drinking alcohol and I think I might have unknowingly aborted some attacks this way.

I have loads more questions, but the message is long enough as it is. So I'll stop here, after thanking you for your patience in reading something this long.

Tomás

[Bonkers]

Ola Tomas,

Welcome. An exceptionally well-written first post. Looks like you've been pretty busy. I'll answer what I can. Others will follow with more and probably better ideas.

First off, ENT (ear/nose/throat) guys aren't given enough training in headache diagnosis/treatment for something as rare and difficult to treat as CH. You really should see a headache specialist, typically a neurologist with specialized training in headache diagnosis and treatment. These guys are around but you may have to do some digging to find one. This is the first step and it may take a while. You may have to see more than one. After getting an accurate diagnosis of CH and depending on your doctor's level of sophistication, you'll probably want to dump him and all his useless, harmful medications.

If you do have CH - and from your description I'm not sure that you do - we can help. This website is a very good resource for information about the various "alternative" treatments for CH. The ClusterBuster Files can be accessed from the Forum Jump at the bottom of this page. Just start in. You'll find almost all of it interesting. Watch this video:

It's a talk by our founder, Bob Wold and gives an overview of what we're doing here. The best all-around, cheapest, safest CH abortive anyone's come up with yet is hyperventilating pure oxygen. You can access the CH.com oxygen page from the grey menu bar at the left margin. http://www.clusterheadaches.com/wwwboard2/index.html is older and bigger than we are. They're more concerned with the traditional approaches to CH and are well worth joining.

This should get you started. Good luck!

Ron

[skibo]

Thanks so much Ron. I've already made an appointment with an allegedly good neurologist with experience in vascular headaches. I'm sick and tired of doctors though. So far they have all been quite unsympathetic, not listened and explained even less.

I've already seen that video, very good. I'll check out the other web site... and I'll ask the neurologist (if he confirms the diagnosis) about getting an oxygen tank. Thanks.

[Bejeeber]

Hi Skibo,

Ron really dished out the good advice there, and I'd just like to say ditto to all of that.

Some additional comments in response to your questions:

1) My personal experience with CH and (I know this is the same for many others) is that the pain is most intense right behind one eyeball, stronger than the other associated trigeminal nerve pathway pain that can hit the teeth etc.

2) About the calcium channel blocker (probably verapamil?), that's actually a tough call in your case, since some folks can bust effectively while still on it, and I don't know that there is wide agreement about how much it may interfere.

3) Other ways to keep things under control (besides the #1 abortive choice of O2 that Ron Mentioned) would be energy drinks with caffeine and taurine for possible help aborting attacks, and for prevention, the high dose vitamin D3 regimen that appears to be working for some CH'ers could be worth looking into -  it is discussed here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416

[skibo]

2) About the calcium channel blocker (probably verapamil?), that's actually a tough call in your case, since some folks can bust effectively while still on it, and I don't know that there is wide agreement about how much it may interfere.

Actually it's Flunarizine (Irrigor 5mg). One in the morning, another one before going to bed. This has dampened the headache activity, not eliminated it at all. Whereas after 11 days of starting taking psilocybin (two doses so far) this cycle seems to be wearing off.

Thanks for your comments.

[cristy]

Hello skibo, I have been about trying mushrooms to help me. i just had a few questions for you. Is the mushrooms still helping? Have you gotten any really bad reactions? Would you suggest it to someone who had cronic cluster for over 3 years, with none stop pain. I tried every medication. And oxygen doesnt seem to help. And i'm going out of my mind! Can ypu please help me i would appreciate it dearly.

[Bejeeber]

Hi Cristy,

I can tell you that there are some chronic forum members here who have been helped by mushrooms so much that they are basically no longer chronic. They've gone into remission!

There's no absolute guarantee this will be the case for every chronic, but certainly worth pursuing IMO.

The bad reactions to mushrooms that I've seen reported are basically 'bad trips'. I've had a couple of them myself, but at a busting dosage level, they were more like feelings of anxiety regarding very real issues affecting me and others around me, not a big delusional freak out or anything. It was so unquestionably worth that temporary unpleasantness a thousand time over to be able to stay in remission.

Taking the herb skullcap with the mushrooms is reported to ease anxiety, and set and setting is important.

I think as long as you read the warnings:

http://www.clusterbusters.com/warning.htm

and don't have any of the issues mentioned you'll likely be fine. Many CH'ers very much enjoy the experience, and in fact my first bust was an enjoyable one. 

[Guest]

set and setting is important

Absolutely, make sure you dont have any thing important to do for a good 12 hours at least. So you have no worries. Good things are amplified and bad things can also be amplified.

The first hour or so are usually the most uncomfortable, mostly anxious feeling, slight body temp change, maybe a feeling of numbness in your limbs. But absolutely nothing to worry about.

The thing you will probably be most focused on is the stretching/melting feeling on your CH side. Its like a massage, your head will feel amazingly clear.

If you do feel uncomfortable, a simple thing like turning a light on or off, or going to a different room, turning on or off a tv, going outside/inside can have a very positive effect on your experience.  Even going to the bathroom makes things better sometimes lol.

The thing is, we are only using a small below recreational sized dose. So chances are you will be at a level 1-3 "trip" of of a total of 5 levels here's a better explanation http://www.shroomery.org/6255/Trip-Reports

If the dose doesnt terminate the clusters it will most likely make other methods of aborting easier, like o2 and nrg drinks. As long as you follow the faqs and guidelines presented by this site, you will be fine.

If your nervous you can start small and "test the waters" Many people claim aborting CH attacks with .5 or less.

Be smart, Be safe, Be well. And read read read, knowledge is power <-- that one is for you Bobb

AO

[FunGuy]

Start here.  DD's busting instructions for newbies

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051922

Set and setting, I can't say enough about it.  Attitude and assistance.

Do you have a good friend that has experience with these?  Nothing better than a good baby sitter.

Read up, ask questions.

FG

[skibo]

Hello skibo, I have been about trying mushrooms to help me. i just had a few questions for you. Is the mushrooms still helping? Have you gotten any really bad reactions? Would you suggest it to someone who had cronic cluster for over 3 years, with none stop pain. I tried every medication. And oxygen doesnt seem to help. And i'm going out of my mind! Can ypu please help me i would appreciate it dearly. 

As you can see there are people here that are much better prepared to answer CH questions than I am. I still have to get a diagnosis from a neurologist to confirm that I actually have CH. I'm only a newbie here. What I can tell you is that CH or not, the two small doses of mushrooms I took helped me A LOT with the "headaches" (more like head-torture). Two weeks almost pain free since I started and I should be at the peak of a cycle right now. And that's something that I hadn't achieved with calcium channel blockers or gluticorticoid steroid nasal spray.

Bear in mind that I've had plenty of experience with hallucinogens in the past, and that's why I didn't hesitate in trying the treatment. But they are powerful stuff. In large doses they can mean an incredibly beautiful spiritual experience or they can also take you straight to hell if you're not prepared. So start with a low dose, make arrangements so that you have a nice, safe and comfortable surrounding and have a friend or someone close and that you feel comfortable with to keep and eye on you. You shouldn't worry too much though with a low dose, you'll probably enjoy it, but better safe than sorry. Everyone is different and reacts to drugs in a different way.

One last thing. If you did have a bad trip, which I seriously doubt would happen with a low dose and in the appropiate setting, there are some very simple techniques to cope with it, like going to another room, doing something else, as mentioned above. You can also take your shoes and socks off and walk barefoot. Sometimes (not always) physical contact is very soothing. As a last resort you could have a couple of "benzos" (benzodiapezines) at hand just in case.

[cristy]

Okay well thankyou so much. it helps talking to you guys it makes me feel like im not alone anymore.

[skibo]

I thought I'd keep you guys updated. I went to the neurologist and he confirmed the CH diagnosis, more or less. He agreed that the symptoms (type of pain, the cycles, triggers, etc.) point in that direction, albeit not without pointing out the difficulties of a definite diagnosis. He took me off the flunarizine calcium channel blocker and told me to take the traditional verapamil (120mg once a day) and that if I did have a strong attack to go to the ER and ask for oxygen to see if that worked. I'm doubtful about this last thing, since oxygen should be used early-on for it to be really effective, isn't that so? But I guess I'll see about that when and if I do get strong attacks. So I suppose the doctor is giving me the traditional treatment to see how I respond, in an attempt to get a more definite diagnosis.

Regarding the pain, I must say that after dosing 3 times with a small amount of mushrooms there has been significant improvement. I should have experienced the peak of a cycle, which didn't actually happen after the mushrooms. Only rarely have I experienced shadows, and significant pain only twice. One of those times was the day after drinking alcohol for an important Copa América football (soccer) match here. A terrible idea, but I'd felt so well the previous days that I thought it would be all right. Other than that, I haven't touched the booze. The other time is today and for no apparent reason

All in all, I've felt much better after dosing, and I'm also much happier with this neurologist, who has experience in CH and other type of headaches, and who actually listens to me. I still have to wait and see if the verapamil does its work or not. The thing is that verapamil is incredibly expensive (by Chilean standards). It's 65 US$ for 20 120mg pills. So to sum up: I've been feeling better, although I don't feel I'm out of the woods yet by a long stretch. Things are looking up and moving in the right direction, I think. But I'm still troubled by occasional shadows and pain, not having a definite diagnosis and by the financial drain of doctors and medicine.

Thank god for mushrooms, which have given me a sense of control over this damn thing; and for this site and the people that visit it, which have made me feel that I'm not alone in this, besides all the great information and advice.