BluesFan85

Okay so I started to see a neurologist yesterday and I'm going to be seeing her about this from now on. So I went yesterday and told her what's she said it's obvious I have cluster headaches and it was nice to talk to someone who seemed to understand what I'm talking about. Anyway she wanted me to try Indomethacin and see if that helps. From what I understand I maybe wrong I don't know but, does this drug actually help with CH's? Has anyone taken this before? She wants me to try it out and call her on Tuesday to let her know if it helps at all and if not we'll try something else. I don't have much hope since most drugs I've taken haven't really helped but still in the back of my mind I'm somehow hoping this helps me. If anyone has tried this or got any info about it I'd greatly appreciate any insight, thanks! At least if this don't work I still got some Zomig NS left and getting another box on Monday so thank god for that!!!

I just wanted to say how incredibly impressed I am with this stuff!!! It's amazing absolutely amazing!!! It doesn't taste bad at all really and literally works within like 10-15 minutes. If you haven't tried it at all I might suggest you do. Only problem I have know is what do I do when I run out? I gotta figure out my insurance a little more and find out exactly how much of this stuff I can get. I wish everyone a PF night and may we all just wake up and be in remission for the rest of out lives!!!

What's an expiration date? Yeah I'm never to worried about something that's expired as long as it's not that old. So I've been hesitant haven't used any of the sprays till now. Early early this morning I got an brutal attack and early afternoon. I feel one coming on now so I'm trying the nasal spray, god I hope this works. Been about 5 minutes since I took it I'm hoping in 10-15 minutes I'm completely okay

Okay thanks guys. Yeah insurance took care of it and I got the spray it cost nothing. I'm going to fill as many scripts as possible so I can stock pile everything

So I just got prescribed this and I'm also taking Verapamil. In the info that comes with the Nasal spray it says don't take if your taking other migraine medications. Can I not take this while I'm on verapamil? I'm pretty sure I'm okay but I just want some reassurance. Anyone else taking this know?

Hey man I understand where your coming from. I also am addicted to heroin. I've been clean now for about 2 years I'm 31 years old. I used drugs all high school I did everything imaginable on top of smoking an ounce or more of dank a week. Anyways when I started getting the clusters really bad at 18 that's when I tried using heroin a lot for the pain not knowing it wasn't going to help. Get help man. I've been to jail many times and prison as well. You ever have a cluster headache while your on a prison transport feet handcuffed to the floor and hands cuffed in front of you? If you want to talk at all just hit me up I'm not gonna post my story whole story up and I'd rather just answer any questions you got if you have any at all. I can probably answer any question you got, let me know.

Okay so I have basically been Chronic a little more then a year now but I've been able to handle the hits exceptionally well and the Verapamil seemed to be working even though I was only taking 100mg 2X/day. I was getting just like 5 or 6's and they'd last for like 20 minutes or a little more and go away, I was always able to fight through them. So the last months though I've been getting hit with the straight 10's you all know what I'm talking about. They've been getting closer and closer together and longer in duration over those months to where I am now. I can't sleep if I fall asleep I wake up within 30 minutes and have a bad shadow which I'm lucky doesn't become more. This goes on for like almost 2 days and then I finally get like 6 hours of sleep, it's ridiculous. Anyways I went to doctor yesterday and I'm upping my Verapamil to 180mg 2x/day and I'm getting the Zomig 5mg Nasal Spray, as long as my insurance covers it. It covered the 100mg Verapamil so I should hope there's no problem with this stuff. I also got a reference to go back to the Neurologist again. Last time I saw him was like 8 years ago. So I'm going back there in 2 weeks hopefully he'll know more then me for once. Another thing is does anyone get disability for these? I really want to work but there is just no way I can, no way. Anyone know what my 1st steps for going about this would be? I need some income I have nothing and I'm just getting really desperate so if anyone has any tips thanks. Also I'm still thinking I'm to try and go the Mushroom route. I used to trip on LSD and Shrooms a lot when I was younger and its funny thinking about it now the summers I did that a lot I didn't get cluster headaches. I don't know why I never thought of that probably because there really wasn't a correlation between the 2 yet in the cluster headache world. Anyway thanks to anyone reading this it feels good to just vent or let out what's going on with me. If anyone wants to talk 1 on 1 or anything just send me a message. Names Jacob I'm 31 and live right outside of Chicago IL

Hey yeah I have been diagnosed by a neurologist at age 18. I do have oxygen and know how to use it but it honestly doesn't work for me, my tank is actually empty I gotta get a refill just haven't jumped on it since like I said it wasn't working it just prolonged the shadow part kind of and would hit eventually. I'm currently taking Verapamil ER 100mg 3x/day which I thought was working but now I don't know. I've taken Lithium, tope something, maxalt, imitrex, predisone, vitamains (d3), and some I can't remember it's been a lot of years. Besides the last 2 years I was episodic, around the 4th of July they'd start and I'd have them till about end of October about 3 months. It was like that for many years, so I've always hated summer so much because I could never do anything like drink and party with my friends ya know? I was in my 20's and I couldn't party or do anything really cause I'd get attacks and I needed to be at home cause I didn't want anyone to see me you know? Anyways the last 2 years they didn't stop in October like they always do they continued and up until a year ago I would get them a lot but I would get a few weeks where I'd get like 1 or 2 a week that were you know like 4's on the pain scale and I could fight through them and live normal pretty much. Then about a year ago I haven't been able to go pretty much 48 hours without getting an attack. Some days I might get a bunch and there intense like 9's and maybe a 10, I'd get 1 and then an hour after if ended I'd get another and so on and this might happen for like up to 6 hours then they'd stop and I might get a day break with 1 attack that's manageable until the horrible ones happen again. It's been like this for a year know so as of know I'd have to change from episodic to chronic, it sucks. I just wish I could figure something out that would make them manageable so I can get some of my life back you know what I mean? As of right now my life is Cluster Headaches that's it I have nothing else because I can't do anything else they control everything!!! Oh I'm 31 now and I do smoke which I also quit for a year but it had no effect on the CH's getting better or going away. Just thought I'd add that

Yeah are you talking about Sinol-M? The all-natural nasal spray? Cause if your talking about this and your cured because of this stuff then your a one in a million. It provided little relief most of the time and sometimes it helped decently. But overall it's not going to cure you Active Ingredients: Capsicum 4X (capsaicin) Inactive Ingredients: Purified Water, Eucalyptus Oil, Aloe Vera Extract, Rosemary Extract, Sea Salt, Vitamin C, Benzalkonium Chloride

Nicole I'm so so sorry for you I really am. Yeah the pain from these things is unlike anything anyone will ever experience except for people like us who have the beast. It's hard for people to even fathom the kind of pain were talking about. Another thing you should get used to is from other people hearing about what you have, "oh you have headaches I've had a bad migraine before to I know how you feel you just gotta suck it up." Yeah that's not a cluster headache. Everyone says get O2 I honestly found it didn't really work good for me at all. Coping with these things is hard let me tell you a few things I do when I get them that might help you and I don't mean pills and stuff just things you can do at home to try and keep occupied until attack is over. Okay for awhile I found that a really hot shower helped out a lot!!! I would stand with it hitting my back on the lower part of my neck and down and sometimes I would kneel down on one knee and maybe rock a little and let the water hit my back. This would honestly work a lot in helping .me block out some of the pain and just cope and handle it. Also I walk in my basement from one side to the other and touch the wall then walk back to the other. Breathing deeply in and out my mouth and just pacing this honestly is one of the best things. Sometimes I also get ice water and take sips as I'm walking for some reason it helps, just little sips. Also you could try energy drinks!!! If you start to get a shadow or that feeling that you think your going to get an attack shortly try drinking an energy drink like a red bull or a monster or something. Make sure it's got Taurine in it. For some reason this seems to work for a lot of people, oh, this and coffee will also work to. Some people also say putting an ice pack on your neck or forehead where your effected helps but I found personally it don't help me at all. Oh yeah calling the ambulance or going to the ER honestly is usually a waste of time by the time they get there or you get to the ER and you get in your attack will probably be gone. I know I've done it like 6 times until finally I was like this is just a waste yeah the attack was super bad but just remember it's going to go away and when your that bad already there really isn't anything there going to do at the ER that's going to help you

I'd be willing to talk to you but I live in Chicago. Been suffering for 17 years and the last year I haven't had more then 2 days with an attack. I've used LSD and Psilocybin but I haven't been able to have a steady supply so I can actual see if it's working or not. Right now I'm getting hit so bad I don't know how much more pain I can take. I can't work that's impossible I honestly don't know what I'm gonna do. I'm gonna end up being some homeless guy walking back and forth under my bridge rocking my head back and forth crying till its over. It's a real depressing thought. These things have led me to substance abuse trying to deal with the pain and when I realized they didn't really help it was to late.

So for some reason I can't lay down and try to go to sleep, because if I do I automatically wake up within 30 to 45 minutes and get a attack about 15 minutes after waking. This has repeated over 12 times since midnight last night. I don't get 12 attacks in a day that's just insane. It's happened before, but not more then 3 days in a week like this week. Anyways, after about 4pm and the 12th attack I couldn't handle another I was wiped out that last one was super intense. So I've just been walking around and trying to keep busy and moving. If I sit down or lay down I can feel the shadow start to come for an attack to follow shortly after. It's been over 24 hours and I still feel like this, I need sleep. Anyone have any suggestions or has this happened to you?

Hi my name is Jacob I'm 31 been suffering since 14 and it completely ruined my life at 18. For the last 2 years I pretty much haven't been PF ever, maybe a few days at the longest. I was episodic for the whole time until the last 2 years and now I know I'm chronic. I've taken pretty much everything and nothing works. Since Sunday night I've been getting a hit about a 7-8 every time lasts about 45 minutes and then about an hour and a half later it starts again. So I've been getting like 12 hits a day now for the last 3 days and I'm just distraught. I just want to go to sleep and not wake up for the 1st time in a long time. I've been battling this for some time now, not as long as others but long enough. Usually I never feel like I want to you know kill myself but this continuous wave of attacks is pretty much cutting me down to nothing. Besides my parents I'm completely alone, have no money, friends, girlfriend, just nothing besides food and a roof over my head which I am thankful for though. The only treatment I've not tried is the mushroom route which I've decided I'm going to go. I just needed to vent right now. I haven't been able to hold a steady job since I was 18, I can't work. Everyday I just keep getting hit with attack after attack after attack. Anyways I know I'll make it I just so want to give up right now though but it just wouldn't be right I couldn't put my parents through that you know? I don't know I just want to say hi to others on here and just vent what I've been going through personally lately. Hopefully I can get a few hours right now with out an attack so I can clean myself up a bit cause I'm just looking like shit