ThatHurtsMyHead

GreenEyes, Since you have a healthy heart, I'd highly recommend picking up your own wrist blood pressure monitor (they also monitor heart rate). CVS and Walgreens has them for around $30 I think. Blood pressure isn't the only danger with verapamil. Heart rate drop is just as big of an issue to watch for. I have a healthy heart and my heart rate is normally 40 to 50 beats per minute. Even a low dose of veramamil for me could be deadly. Organs can be damaged if your heart rate drops too low (bradycardia is what it's called). Again, I really don't want to scare you, just want you to be safe. J

I don't know about dose as It's been years since I took Verapamil BUT.. Please be very careful. If you have a healthy heart, that stuff can be terrible on someone that's healthy. It gave me PVC's (premature ventricle contractions), that took several years to go away after stopping the Verapamil. (That stuff is poison in my opinion). Some studies show it only has around 5% efficacy as well. Sorry not meaning to give bad news. Just want anyone taking it to be very careful of the negative side effects. They can be deadly. J

I recognise so many faces. Love all you guys and gals. Wish I could have been there this year. Hurricane season has been a bear this year. Just glad I'm not one of the people living in the Keys right now. J

amon10, Sorry to hear you're canceling. Sadly I won't be able to get there this year either. +++ hoping it's on for 2018 though J

tkummer, Sorry, but I've not heard of that specific start to a CH attack. It might not be that out of the ordinary, but you might want to see the doc. Since you've been in remission for so long, and I'm guessing your previous attacks didn't start this way, means there could be something else going on. J

Mit12, ++ CHF's post. Staying on the O2 for 10 to 15 mins after the attack is gone most always keeps the attack from coming back (for me). J

Kaaiohelo, ++++ Everyone's post above. I left the military in 93' and was never properly diagnosed while in service. To be honest, I don't know how I held it together while I was in service with my CH. My attacks weren't as frequent or painful, but got worse over the years. I would be a strong advocate for seeking medical discharge due to his CH. I hid my attacks because I was on flight status. I didn't know what caused them, but knew I'd be grounded if the flight surgeon figured out they were as debilitating as they were. That BAD decision on my part seriously hurt me for the rest of my life.... I didn't have my condition properly documented, nor did I allow it to be part of my discharge reason. For some reason vets have a significantly higher incidence of CH. I'd suspect it's something that we're exposed to in service that triggers it. I've read of others having anywhere from 80% to 100% disability through the VA for service connected CH. That's a LOT better than any retirement he could get by staying in. (IMHO). Accolades to you for being a good supporter! PFW, J

D, Glad you found us. Sorry you're having a bad go of it. LSA is a great place to start. When I started unconventional meds 8 years ago, LSA seeds were first thing I tried (and for the most part work GREAT!) In a nut shell the two most common sources of LSA is via Hawaiian Baby Woodrose or Rivea Corymbosa seeds. They can be legally purchased over the internet. A VERY easy water extract process can be used to get the LSA out of the ground up seeds. Here's a link directly to the LSA / seed overview and process here on ClusterBusters. (odd, the site won't let me paste the link in Here's how you get to it: 1) On the top click "Forums" 2) Click the second forum called "ClusterBuster Files" 3) Scroll down to #5 " 5. - LSA - SEEDS OF THE VINE" PFW, J

I have to agree with everyone else here. there's no way I'd take some unknown compound from an unknown source... Who's to say it isn't lethal??? Not to mention giving my home address out to a complete stranger on the internet is a bit scary. kokoreli, I for one am definitely happy that you're pain free. But, the "stuff" you have is pretty useless if it can't be 1) proven and 2) reproduced J

Jacob, Sorry to hear you're in a bad place. It does get better. There are thousands of us now that can attest to that! As far as I'm concerned mm is magic at kicking our CH to the curb. Have you tried sleeping sitting up in recliner? That's magic for me at reducing the frequency and intensity of the night attacks. I started taking mm, and LSA (seeds) about (hmm maybe 8) years ago now and it's completely changed my life for the better. I'm curious, where in the states are you? PFW, J

Hi everyone, I'm posting this for Eileen (Cluster Busters, Communication and Education Director). This company is recruiting research subjects for a CH treatment. If interested, you can signup at the following link. https://www.science37.com/participants/neurology/cluster-headaches/?utm_source=ClusterBusters&utm_medium=Research PFW to all, J

Ecaseson, There are lots of headache conditions very similar to CH, but with a different location, type or pattern of pain. I'm no doctor, but I'd say you have a very close variant of CH. Maybe someone else will chime in soon on your question. PFW, J

rscham, Never had something like that myself. I'd second Pixie's post. We all know what our CH is like. Something different should be investigated. PFW, J

Dane, You're correct. Passing out would be the best thing in the world. I think the nature of our pain (originates inside our brain) is why we don't pass out. J

Keyser, I think I get what you're asking more than others that haven't worked a remote job before. No worries. I worked from home for 8 years. Large portion was due to my CH. Here's a few things to think about that might help. Computer Docking station Monitor Internet (my employer paid for my high speed internet, $40 per month for maybe 4 years My employer had a budget and could have bought me a workstation desk for home, but I didn't need it. Make sure you get into a schedule of meeting with coworkers. Working away from coworkers and a supervisor 100% can create a disconnect in the workplace. Scheduling a weekly or monthly lunch or office visit would help a lot. Cheers, J

Ecaseson, Thanks for the correction. I've luckily been able to stay away from that stuff since starting my MM, and LSA dosing 7(ish) years ago. J

Archimedes, I think (for me anyway) that what you're experiencing is fairly common. When my CH attacks break I always get a release of sinus / ear pressure on my attack side right as the pain is stopping. I think it has to do with the swelling we get during an attack on our attack side. Causes the sinuses and eustachian tube to swell and reduce (or stop) airflow). When the attack stops, the swelling quickly subsides. I always get a gusher of a nose run also right as my attack stops (on the attack side). J

Gigi, I think the botox injection you're talking about is usually called a nerve block injection. There's several threads with lots of information. Some people it works for, some it doesn't. Even further, some people it worked for one time, didn't a second time. (sorta like all of our treatments accept for mm, lsa, lsd etc). There's also a doctor that gives an injection with Vitamin B along with steroids. Some people say it works as well. You'll see a few discussions on the board calling that the "jesus shot". PFW, J

It's great to see you around the board again Pixie... J

I want to try to stay neutral when it comes to people posting on the board, BUT... In situations that someone would post garbage bashing one of the BEST CH doctors there are, is a quack... Plain and simple... Boston Headache Doc listens to his patients, and works toward getting them to better manage their (our) condition.. Shevel for all practical purpose (IMHO) is a quack... There's entirely too many first hand experiences that people are in the poor house (upwards of $50,000 for his procedures) with worse CH because of Shevel's procedures.... J

Active diver here. Ask away any questions. Spiny is correct (for me anyway). When in cycle there's NO diving for me. Going down is fine, but guaranteed an attack when I break the surface. When out of cycle, 100% OK. J

A good friend at a conference a few years ago pulled a cool magic trick... He bet anyone he could tell them the side they get their CH attacks on.. Everyone he guessed was correct. I asked how he did it. He said, that if you look closely everyone with CH has either a lower eye, sagging eyelid or sagging under eye on the side they get attacks. I did some looking around at people, and he was completely correct. If you look closely most if not all of us are lower on our attack side. I don't know how that relates to those with CH that changes sides, or have attacks on both sides though. J

I just sent an email via the app, but figured I'd jot a few notes here as well. It looks like a potentially great app, but without the ability to free form entries, for me it's not very usefull. Example: For triggers. People could have a button for triggers. That button would open a freeform txt entry window that would allow them to enter a possible trigger they just experienced. Then as they plot potential triggers and CH attacks, the pattern would be evident. They could then click on the potential triggers that happen just before their attacks to figure out what was a "Real" trigger. For Food allergies: I've figured out that I have an allergy to Tyramine (which is also a CH trigger for most people). My allergy has gotten much worse recently for some reason. I need to figure out what foods are triggering my muscle and joint pain. If I could have a button "Food" that allowed me to freeform entry any food I've eaten. Then I could track my muscle and joint aches better to which foods are causing it. I would think the best way to plot the free form is not label every different entry on the chart, but have a single "Food" or "Trigger" color and title for the chart, but allow the person to drill down (click) on the entry to see the detail. App looks great, the above functionality will definitely make it 1,000% better. J

Apples, I'm near Tampa, but still a ways away from S FL. Please post any questions, as everyone here are great at helping. J

Andrew, mm (and truffles), LSD and LSA definitely help. They've been the only thing that's given many of us our lives back. I was chronic and have been taking regular doses for over 7 years now. I've been pain free a significant amount of that time. I believe truffles are available where you live. Please read the files section on this message board. There's a specific process you need to follow. 1) detox from all triptamine type drugs (Imitrex, maxalt etc. etc). 2) Wait 5 days from he start of detox for your first dose. Take enough for a "threshold" dose. Meaning you get some trip out of it. Most of us find that the stronger the trip the better the medicine works on our CH. 3) You'll likely get what's called "slap backs" after your first dose. Don't worry, the attacks will go down after the 2nd and 3rd doses. Take each dose 5 days apart (not 4, not 6). For some reason 5 days is the sweet spot for something in our brain to reset. After the 2nd dose you should notice the attacks being milder and slightly further apart. After the 3rd dose most people are pain free, but a lot of people also need another dose. It all just depends on your body chemistry, and the strength of the mm. post questions. (but please read the busting files section). :) J