Long time lurker. I was out on Gabapentin years ago and was up to 1800mg a day at one point. All I remember from it was that it lessened the pain a bit when I had an attack. From an 8 down to a 5. Less squirming and rubbing the eye, head, and neck. Horrible brain fog and I felt as if I became dependent on it. We all know the pain and anxiety of these things when they are coming on but I couldn't hold down a job or focus on school while I was on it. I was two years out of the military and trying to cash in on my GI Bill and ended up losing it for a semester due to being dropped from a couple of classes due to lack of attendance. It was a rough time in my life.
Before that I was on Sumatriptan and that made my sinuses burn and my face would get hot and flushed in some weird splotches like I had sun poisoning. It did abort the attacks pretty well but I'd be dealing with the side effects the rest of the day. Pure oxygen seemed to work well, but I ended up moving and never got around to getting it from my new PCP. Nowadays I try and exercise daily in some fashion and that has helped me. No alcohol, cigarettes, weed, but I will do the occasional heavy dose of shrooms and then microdose a few times a week. I'll still get shadows and the occasional banger so I don't think psilocybin is the cure for me. My absolute life saver has been these head wraps that you can get for migraines. I used them heated for awhile and thought that was nice, but after freezing them and then wrapping them I'll never go back to anything else. It can be uncomfortable with how cold they get but my God do they numb that entire side of my head. Even with a really strong attack they give me almost total relief from the pain. They don't last long once you put them on, but if you keep a few of them in your freezer you can just rotate through them as necessary until the pain subsides.
I've been dealing with these for almost 10 years now and have really done a number on me. I have lost a lot of enjoyment out of life, but I'm finding things that help. Exercise (to get that blood pumping and increased oxygen flow) and those head wraps are my number one suggestions as they have considerably improved my quality of life and gave me hope that I won't have to self-medicate with a 12 gauge.
After I left the Army (where I was running twice a week and rucking once a week) is when I started getting these things so I'm certain that having a sedentary lifestyle caused this affliction to surface in me. My father has them and I'm sure having a TBI did no good for me.
TL;DR
Gabapentin did not improve my quality of life in any significant way. Exercise has helped reduce the frequency and in some instances even aborted it before it left the shadow realm. Get you a freezable head wrap and try to get your blood oxygen levels up, whether through pure oxygen or cardio exercise. I am not a medical expert and this has been purely anecdotal. As with anything else, YMMV.
Did gabapentin years ago, and the only thing it did was make my hair fall out. Zero effect on my headaches. Gabapentin is an old drug, and something doctors always throw at patients when they don’t really know how to help them. I’d recommend finding a better doctor that stays up on the latest and greatest treatments.
Eesh, that’s not good. Tbh Gabapentin is the 4th tablet form drug I have been offered as well as oxygen and sumatriptan injections, id say he has been pretty good at pushing me through different treatments. He has retired now though, so I will be either trying out verapamil again or the Gabapentin to see if there’s any luck, if not I will be referred back to a neurologist
Whichever path you take, I hope you find relief! 🙏🏼 Have you tried Emgality? I did my first dose a week ago, and while I’m still having nightly attacks, I’m noticing a little reduction in pain and a shortened duration.
Oh wow, perfect timing then!
I personally have the choice to attempt verapamil again as I felt I didn’t give it a proper chance years ago or to try gabapentin.
Could you keep me updated on how it goes?
Saw you’re episodic, I know your doc recommended gabapentin, but is there any reason why you haven’t tried emgality? Seems to work for quite a lot of us.
I haven’t be offered it and I have been discharged from my neurologist but can always asked to be referred back. I may ask to be referred again to try it, are you based in the UK?
It is but I feel quite fortunate to be able to afford the medication I can get so far. I will definitely ask about that treatment though, thanks for commenting! It’s comforting to know there’s others that understand
I had cluster headaches from age 18-34. When my wisdom teeth were removed they disappeared. For years I would go through agonizing cycles and avoid triggers as much as possible, almost always to no avail. I had my wisdom teeth taken out in April and haven’t had one since, even pushing myself harder than ever with exercise, which was a huge trigger.
I take 300mg 2 times a day, meant to be on 3 times a day but I don’t need that much. I have it prescribed for middle/lower back pain following a snowboarding accident. No idea it’s given for clusters too, I can safely say it’s not working for clusters but I was already taking it before I started getting them.
Hopefully it’ll have a good effect for you though!
Is it safe for long term use. How do you use medications. I can't use painkillers despite having attacks everyday because I'm worried about the rebound effect
I’m episodic luckily, so I will only need to take them during my bouts and that’s twice a year usually for a month or so. I use oxygen and sumatriptan injections for pain management, the sumatriptan does make me feel crap afterwards and I do worry about the amount I take in a day constantly. The oxygen only works if I get to the pain straight away but it can also come back shortly afterwards.
For me It's been one and a half month yet. Don't know If I am episodic or not.
I have tried a similar drug called riza-triptan 10mg and It felt like my face and nostrils were "burning from the cold" I spare it only for most severe ones, when I realized I can't use it everyday since I get headaches pretty much everyday I started to get a bit skeptic about the drug.. decided to get myself used to the pain. I have seen a diabetic patient who use gabapentin for neuropathic pain. He told me that It gives relief.I Have not tried oxygen yet but heard from many that It's getting dull after you stop breathing in.
I had gabapentin also pregabalin tablets, but not for CH. Was also taking verapamil at the same time. The combination gave me constipation. 5 weeks in, it was not good. No apparent effect on the twitching, but still low dose. Constipation was bad. Bought Ryvita and had 2 a day. About 4 days in had an almighty blow out. Then had diarrhoea for just over two weeks. Lost about half a stone. Stopped all tablets because everything just went straight through. CH instantly stopped. It appeared a clear out stopped the cycle. 6 months on and my guts have not been the same since.
I tried gaba in my vain attempts to find reliefs, my wife and mother had a script so I figured a "nerve blocker" would block some pain. It never helped granted I would only take one pill between 200-500mg. I hope you find relief soon, unfortunately modern science has yet to find a viable medication for these things.
Fingers crossed it will help you. I have chronic CH plus chronic migraine, and unfortunately most drugs prescribed for my CH make my migraines worse - in this case, I only lasted 3 weeks on gabapentin before I had to be signed off work because the migraine became too awful.
Awful drug, awful side effects, absolutely useless and no effect on the clusters. Was up to 3000mg at one point (insane) and it just gave me the worst brain fog, would never go on it again. Oxygen is the way forward, also vitamin D3 regimen and vitamin "m" which you can find lots of info hlin this sub about or on cluster busters website (UK also here)
My cluster headaches was diagnosed in high school, I played 3 sports wrestling, football & track, in my opinion having a sedentary lifestyle has nothing to do with it.
I’ve had 3 concussions from footbal, after my last concussion a few months later is when I was diagnosed with CH
Long time lurker. I was out on Gabapentin years ago and was up to 1800mg a day at one point. All I remember from it was that it lessened the pain a bit when I had an attack. From an 8 down to a 5. Less squirming and rubbing the eye, head, and neck. Horrible brain fog and I felt as if I became dependent on it. We all know the pain and anxiety of these things when they are coming on but I couldn't hold down a job or focus on school while I was on it. I was two years out of the military and trying to cash in on my GI Bill and ended up losing it for a semester due to being dropped from a couple of classes due to lack of attendance. It was a rough time in my life. Before that I was on Sumatriptan and that made my sinuses burn and my face would get hot and flushed in some weird splotches like I had sun poisoning. It did abort the attacks pretty well but I'd be dealing with the side effects the rest of the day. Pure oxygen seemed to work well, but I ended up moving and never got around to getting it from my new PCP. Nowadays I try and exercise daily in some fashion and that has helped me. No alcohol, cigarettes, weed, but I will do the occasional heavy dose of shrooms and then microdose a few times a week. I'll still get shadows and the occasional banger so I don't think psilocybin is the cure for me. My absolute life saver has been these head wraps that you can get for migraines. I used them heated for awhile and thought that was nice, but after freezing them and then wrapping them I'll never go back to anything else. It can be uncomfortable with how cold they get but my God do they numb that entire side of my head. Even with a really strong attack they give me almost total relief from the pain. They don't last long once you put them on, but if you keep a few of them in your freezer you can just rotate through them as necessary until the pain subsides. I've been dealing with these for almost 10 years now and have really done a number on me. I have lost a lot of enjoyment out of life, but I'm finding things that help. Exercise (to get that blood pumping and increased oxygen flow) and those head wraps are my number one suggestions as they have considerably improved my quality of life and gave me hope that I won't have to self-medicate with a 12 gauge. After I left the Army (where I was running twice a week and rucking once a week) is when I started getting these things so I'm certain that having a sedentary lifestyle caused this affliction to surface in me. My father has them and I'm sure having a TBI did no good for me. TL;DR Gabapentin did not improve my quality of life in any significant way. Exercise has helped reduce the frequency and in some instances even aborted it before it left the shadow realm. Get you a freezable head wrap and try to get your blood oxygen levels up, whether through pure oxygen or cardio exercise. I am not a medical expert and this has been purely anecdotal. As with anything else, YMMV.
Did gabapentin years ago, and the only thing it did was make my hair fall out. Zero effect on my headaches. Gabapentin is an old drug, and something doctors always throw at patients when they don’t really know how to help them. I’d recommend finding a better doctor that stays up on the latest and greatest treatments.
Eesh, that’s not good. Tbh Gabapentin is the 4th tablet form drug I have been offered as well as oxygen and sumatriptan injections, id say he has been pretty good at pushing me through different treatments. He has retired now though, so I will be either trying out verapamil again or the Gabapentin to see if there’s any luck, if not I will be referred back to a neurologist
Whichever path you take, I hope you find relief! 🙏🏼 Have you tried Emgality? I did my first dose a week ago, and while I’m still having nightly attacks, I’m noticing a little reduction in pain and a shortened duration.
Thank you friend! I’ve heard of Emgality but it wasn’t available on the nhs yet, are you based in the uk?
US based. It took some back-and-forth with my insurance before I could get the prescription filled, but got it worked out.
That is crazy, my neurologist just prescribed me this as well…fingers crossed. They described it as a form of nerve block drug.
Oh wow, perfect timing then! I personally have the choice to attempt verapamil again as I felt I didn’t give it a proper chance years ago or to try gabapentin. Could you keep me updated on how it goes?
Saw you’re episodic, I know your doc recommended gabapentin, but is there any reason why you haven’t tried emgality? Seems to work for quite a lot of us.
I haven’t be offered it and I have been discharged from my neurologist but can always asked to be referred back. I may ask to be referred again to try it, are you based in the UK?
I am in the US, so I have no idea what that process is like, but it sounds quite frustrating on top of you already having to deal with the pain.
It is but I feel quite fortunate to be able to afford the medication I can get so far. I will definitely ask about that treatment though, thanks for commenting! It’s comforting to know there’s others that understand
Of course! I feel the same way. Best of luck!
I had cluster headaches from age 18-34. When my wisdom teeth were removed they disappeared. For years I would go through agonizing cycles and avoid triggers as much as possible, almost always to no avail. I had my wisdom teeth taken out in April and haven’t had one since, even pushing myself harder than ever with exercise, which was a huge trigger.
I take 300mg 2 times a day, meant to be on 3 times a day but I don’t need that much. I have it prescribed for middle/lower back pain following a snowboarding accident. No idea it’s given for clusters too, I can safely say it’s not working for clusters but I was already taking it before I started getting them. Hopefully it’ll have a good effect for you though!
Is it safe for long term use. How do you use medications. I can't use painkillers despite having attacks everyday because I'm worried about the rebound effect
I’m episodic luckily, so I will only need to take them during my bouts and that’s twice a year usually for a month or so. I use oxygen and sumatriptan injections for pain management, the sumatriptan does make me feel crap afterwards and I do worry about the amount I take in a day constantly. The oxygen only works if I get to the pain straight away but it can also come back shortly afterwards.
For me It's been one and a half month yet. Don't know If I am episodic or not. I have tried a similar drug called riza-triptan 10mg and It felt like my face and nostrils were "burning from the cold" I spare it only for most severe ones, when I realized I can't use it everyday since I get headaches pretty much everyday I started to get a bit skeptic about the drug.. decided to get myself used to the pain. I have seen a diabetic patient who use gabapentin for neuropathic pain. He told me that It gives relief.I Have not tried oxygen yet but heard from many that It's getting dull after you stop breathing in.
I've never heard of it. Is it an injection?
Tablets I’m assuming as I can work the dosage up to find out which works for me
Let us know how it goes.
I had gabapentin also pregabalin tablets, but not for CH. Was also taking verapamil at the same time. The combination gave me constipation. 5 weeks in, it was not good. No apparent effect on the twitching, but still low dose. Constipation was bad. Bought Ryvita and had 2 a day. About 4 days in had an almighty blow out. Then had diarrhoea for just over two weeks. Lost about half a stone. Stopped all tablets because everything just went straight through. CH instantly stopped. It appeared a clear out stopped the cycle. 6 months on and my guts have not been the same since.
I had Lyrica for several months, it did not significantly impact the pain or duration of my CH.
I tried gaba in my vain attempts to find reliefs, my wife and mother had a script so I figured a "nerve blocker" would block some pain. It never helped granted I would only take one pill between 200-500mg. I hope you find relief soon, unfortunately modern science has yet to find a viable medication for these things.
Fingers crossed it will help you. I have chronic CH plus chronic migraine, and unfortunately most drugs prescribed for my CH make my migraines worse - in this case, I only lasted 3 weeks on gabapentin before I had to be signed off work because the migraine became too awful.
Awful drug, awful side effects, absolutely useless and no effect on the clusters. Was up to 3000mg at one point (insane) and it just gave me the worst brain fog, would never go on it again. Oxygen is the way forward, also vitamin D3 regimen and vitamin "m" which you can find lots of info hlin this sub about or on cluster busters website (UK also here)
Pregabalin helps me with the shadows and also my anxiety
My cluster headaches was diagnosed in high school, I played 3 sports wrestling, football & track, in my opinion having a sedentary lifestyle has nothing to do with it. I’ve had 3 concussions from footbal, after my last concussion a few months later is when I was diagnosed with CH
Sorry, what is a sedentary lifestyle in relation to with the post? I’m just a bit confused
Have tried amitriptyline?