MoxieGirl

Domino, I'm not offended at all, and yes, I'm post-op. No going back. Yes, I agree, I'm an extreme case. I always remember when I saw my neurologist about the clusters for the first time, and he told me he could name 10 of his patients off the top of his head that were transsexuals, and he believes their migraines or clusters were directly connected to transitioning and the massive altering of hormones. He's trying to get the gender clinic in London to do a correlation study, but I've not heard more, and that was some years ago. He believes my hypothalamus was primed to have clusters, and changing my hormones triggered it. I believe it was one specific brand of hormone I took for a few months, although no way to prove it. Yes, both men and woman have Testosterone and Oestrogen. Both sexes need both hormones. Although it's not always about how much your body produces, but how your receptors are set up to use it. While transitioning, I took an anti-androgen, which told my receptors to stop using Testosterone, the result being my body stopped producing as much as it wasn't getting used. If someone had told me before I transitioned that I'd suffer with cluster headaches for the rest of my life as a result, I would still go through with it. We all know how bad clusters are, being in the wrong body is 1000 times worse. At least I have a life between attacks, before I transitioned I had no life. Spiny WONDERFUL AMAZING NEWS! When I was male, I had the strongest nails ever. Once I cut my T levels down, my nails became ever so brittle. It is a good indicator of your T level. I know people who take a lot of Omega 3 and they get quite strong nails as a result of all the T in Omega 3. Interesting stuff. I consider myself blessed to have lived life as a member of both sexes. Not many people get to see the world from my perspective. It's not only a very interesting point of view, but I have come to believe that 80% of who you are as a person is directly influenced by your hormones. Hang in there people, MoxiGirl

Hi Grace, Looks like you're getting some excellent advice already. There is also the 'Vitamin D3 Regimen' that a lot of people find helpful. It is basically high doses of Vitamin D3, Omega 3 and a few other things - all legal and safe. More information can be found here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 I can sometimes be a little light sensitive when suffering an attack, although movement and smells affect me more. Most CHers don't suffer with sensitivities - light, sound, movement, smell - during a cluster attack, certainly not like migraine sufferers do. I think because I also have a lot of migraines, any head pain can really up my sensitivity. The vast majority of cluster heads I know can't sit still during an attack. I tend to curl up in bed and stay as still as I can, although at the peek of the attack I tend to toss and roll about quite a bit. This is the first I've heard of caffeine being a trigger, it is usually our friend. Then again, alcohol is NOT a trigger for me, which is very rare. Most people find alcohol a massive trigger. As Jeebs said, cluster headaches being one sided is a hallmark sign and is one of the diagnostic indicators. But, I've had a cluster on both sides at the same time before, as well as having clusters move from one side to the other. Not often mind you, maybe 3 or 4 times out of a couple thousand attacks. The more I talk with people about their clusters, the more I believe there are no absolutes when it comes to the beast other than extreme pain. MG

Hi Susan, From your brief description of your previous bust attempt, it sounds a little like a 'slapback' headache. Often when people bust, they'll get weird cluster headaches within the 72 hours post bust. Sometimes they are sharper, or harder, or come at an odd time. Sometimes they last longer or shorter. But they are 'different', which is about the only word I can think of that describes them. We typically take slapbacks as a good sign, a sign that the bust is doing something if nothing more than stirring up the beast. I routinely busted on 1.2 grams of cracker dry mushrooms, which is the lower end of the dose I'd recommend. But 1.2 grams worked. Some say to take enough that you see God (or gods), but I think that is something that takes some working up to, especially, if like me, you have little or not prior experience with shrooms. MG

Hi Suz, Yes, I'm from Iowa. However, I haven't lived there in many, many years. I'm currently living in England, so probably a bit far. I grew up in the SE corner of the State. Hugs. MG

Very happy to ready the positive tone in your voice. So glad you are feeling better. xx MG

Hi Melody, I'm also chronic, 7 years. Mushrooms have also given me the occasionally month attack free, but have mostly extended the attacks I used to get every other day to a week, sometimes 2 weeks. Which is awesome! I'd suggest to keep busting even through a month or two of remission. Maybe set a target of 3 or 4 months attack free before you stop busting so regularly. Just an idea. Also, try changing the dosage amount like suggested, or swapping shrooms out for seeds for a time. I find my body quickly adjusts to medicines, and I constantly have to change things around. What worked great for me last month may not work at all this month. I recently switched to capsules, and love them! I store them in an empty vitamins container with a package of desiccant. Seems to work well. Good luck, MG

Big hugs to you siouz, I've been in similar places, it's not nice on so many levels. Being a single-parent with a full-time job is stress enough for one lifetime. For me, I find if I have too much or too little stress in life, that seems to trigger attacks. I always play a balancing game of having just the right amount of stress. Not much help I know. I'm thinking about you and sending what positive energies I can. Hang in there. xx MG

You may have seen this already, well worth a read and it has links to the original studies at the bottom. http://higherperspective.com/2013/08/new-study-magic-mushrooms-repair-brain.html MG

Hi brs82, Welcome, sorry you have to be here. What ThatHurtsMyHead said. I know people have gotten successful results from only a 4 day gap between busting, which I assume would be the same as a 4 day detox. It might be worth considering, and I'd love it of others confirmed or corrected this statement, but perhaps a 4 day detox, then bust every 4 days for a couple of times, then, when you're able, push it out to 5 days. The 5 day rule is a hard and fast rule, in a world with no hard and fast rules. 5 days, I think, is actually a pretty good, proven guideline, but some (I believe) have been successful with slightly less. The worst case, the bust doesn't help and you have to wait another 5 days to bust again. So do you gamble with the 1 day up front in hopes that it'll work, or do you wait that extra day to be sure it'll work? From what I understand, and with my limited experience, if you bust and don't get any tripping effects, then you busted too soon and it isn't going to be effective on the clusters. I know we promote taking as small of a dose as possible to be effective on the clusters with minimal trip, but I also understand that some trip is important and a good indicator something is working. Again, would love it if the more experienced here would jump in and correct me if needed. MG

Hi, You need to get to a doctor and get properly diagnosed. I'd make that a priority, as (not knowing what country you live in) a doctors backing should protect you at work. One of the worst things with invisible conditions like headaches is that they are hard to prove, and if your employer is someone who doesn't suffer with headaches, is hard for them to understand how debilitating they can be. So get a doctor to back you up. Then, while at the doctors, get on high flow oxygen to help abort the attacks. MG

Hi, welcome to the group, and sorry you have to be here. You can't get better advice than what CHFather has already given you. He knows his stuff, and I second everything he's said. I believe clusters follow one rule: No two people's clusters are the same, and just as soon as you figure yours out, it changes. I've read many, many posts like yours. People get so used to the clockwork precision of cluster attacks over the years, when they change, they are totally shocked. In my experience, this is normal. I took Indomethacin to help with my chronic daily headaches, taking it instead of Anadin for several months. I always had to make sure I'd eaten before taking it as it would otherwise make me ill and very light headed. There is a variant of clusters called SUNCT, which responds really well to Indomethacin, but clusters don't. Water off a ducks back sort of thing. Nothing you take orally will work fast enough to abort a cluster. Well, apart from caffeine. I find energy drinks or coffee can help shorten an attack. (That said, I'm sure someone will post saying they find some oral medication works as a great abortive - I refer to my rule above.) Like you, I'm a serious rum drinker. Thankfully though, alcohol isn't a trigger for me. But for most people it is an instant trigger. I agree with CHFather, your diet, lifestyle, etc. probably has little to no impact on attacks. That said, if I don't get enough sleep or my stress is too high, or two low, I'll get hit bad. Try to find a doctor who knows about clusters, or do your own research and tell your doctor what you need. How long will this cycle last? Not sure anyone can tell you that. Hang in there though. xx MG

I read the book 'this is your country on drugs', which I'd recommend to anyone interested in the 'war on drugs.'. The author talked a lot about Ayahuasca, interesting stuff. Not sure I'd ever want to go there.

To be honest, I have no experience with cocaine. So my advice is purely academic. If it helps you, then my first response is 'great!'. This is along the same vein that 4-6 shots of vodka will stop one of my migraines in their tracks. My GP and Neuro both said that I should use it with caution. 1, there is a risk of addiction, but 2, the more I use this as an abortive, the less effect it'll have and I'll have to keep increasing the dose. Vodka is my last resort bullet for a really bad migraine. A benefit to psychedelics that that their risk of addiction is very low. From everything I've read, cocaine is always in the top 10 list of most addictive drugs. This, at least in my mind, makes psychedelics much safer. I wish I could take the moral high ground and say that I'd never taken something to cure CH that didn't cause distress to another part of my body, but I was once on Topiramate for 18 months. Topiramate taught me to be very careful about side affects. MG

I tend to apply the 'Rule of Microsoft' whenever a new 'cure' comes out for CH. In the techie world, the 'Rule of Microsoft' states that you NEVER become an early adopter of a new Microsoft product, upgrade or release. You always wait a minimum of 6 months to a year before you upgrade your system with their software. In that time, many other people will try it, and Microsoft will come out with 100s of patches so that by the end of the year, it actually (almost) works. In the handful of years I've had CH, I've seen one 'cure' come out after another. An eye doctor even claimed he had specially tinted glasses proven to cure cluster headaches. What a quack. Let other people be the guinea pig, especially on something so invasive. Wait for the good track record, read all the information you can find on it, then add to your list of considered options. MG

Hey stranger! I have wondered how you were getting on, and am SO glad you have such fantastic news. You were always an inspiration to me, and I am over the moon to hear you are doing so well. Proof that this beast, if it can't be killed, it can be tamed. Busting has also done wonders for me. I've gone from 1-5 really severe hits every 2-3 days to 1 or 2 annoying little pings a week. For the most part, still occasionally get bad one, but have only had 1 KIP10 this year! I remember when I was excited about getting only one KIP10 a week! I'm a little bit bummed though, ran out of the magic medicine and my latest crop is a failure. Going to bin it this weekend and start again. Definitely something to keep stocked up on, not gonna happen again. Granted, I have been busting almost weekly for some time now, so should have planned ahead better. I've switch from tea to gel caps. I was finding that even the thought of tea, let alone the smell, was turning my stomach. I didn't mind the taste, but couldn't contend with the smell. Gel caps are awesome, and I've worked my way up to 3+ grams a bust, and really enjoying the trips too. Oops, is that OK to confess to here? I know it's not about the trip, but as someone who didn't do drugs growing up, I'm finding it really enlightening. Anyway, work calls. Am very delighted by your update. I wonder if we should have a thread in the CB Files section purely for 'Success Stories', where people could list their inspirational stories like yours. Many hugs MG

Wow! I'm longing for an OBE, can't just quite get there. They say that just before you leave your body, there is a vibration. I often experience an all over vibration when I'm tripping. I try to relax into it, but can't seem to escape the flesh. :/

Any and all positive articles are a good thing. Changing user perception, and then the law, is a slow process. We have years of lies and narrow minded propaganda to rewrite. MG

I meditate, although not as often or as deeply as I'd like. I find tripping to be a very similar experience, and often a catalyst to deeper trains of thought, or perhaps to just letting my mind go without any guidance. I find it very interesting that many people who take psychedelics report out of body experiences (OBE), and meditation is also a path to an OBE. Doesn't take a genius to notice some comparisons (I'm not a genius, and I noticed them). I know of other ways to get into a very similar head space without the aid of drugs, but it might be a bit of an adult topic for this site. MG

It sounds like Daily Chronic Headaches. Not fun. My longest single headache lasted 7 months before it started to dissipate. Now I have a headache 4 or 5 days a week. Doctors can't really do much, and I've had a battery of tests. MG

I've come to believe there is ONLY one hard and fast rule about clusters. No two cluster sufferers experience them the same (or have the same triggers), and you no sooner figure yours out and they change. MG

Well, there are certainly a couple really good statements in there... 'Migraine remains poorly treated,...' and 'There is a huge treatment need for migraine.' I'm glad they are looking at new approaches, and I hope it proves effective. I always find the placebo affect of these studies interesting, because it shows how much our thinking affects our physical health. On a side note, in 2010 I had 42 migraines. I busted that December, and in 2011 I had 3. A 93% reduction in migraines. MG

Hi davepmoll, The only consistent rule I've ever found regarding clusters is this. No two cluster sufferers are the same, and just as soon as you've figured out the rules of your clusters, they change. Hang in there. MG

Yeah, a pretty daft system really. The National Health System in England isn't perfect, but is a million times better than that. MG

Hugs. Got nothing to add apart from hugs. But sometimes hugs are what is needed. Hang in there. MG

For me, it's not any particular smell, but strong smells in general. ESPECIALLY if someone shoves a smell in front of my nose without warning. I've had migraines from walking in bath & beauty shops, or someone taking a candle, or perform and going 'here, smell this' and it's in my nose before I can prepare myself. The is true for sudden cold. If someone touches me with a cold thing without warning, watch out! MG