Trackle

Thank you all so much for your answers. I do use oxygen and have a tank in my bedroom. Like Spiny - almost all of my attacks happen at night as well. Right now I take 1 in the morning, 1 in the afternoon, and 1 right before bed; but had considered changing it to one in the morning, one before bed, and one in the middle of the night. Like previously stated - it does not stop them, but does make them more sparse and less severe. The only reason that I even started the meds was because I have been having CH for 8 years and decided that I needed a proper diagnosis for my medical records and to get oxygen. After this cycle ends it will be back to the mm treatments but with the added ability of oxygen. I have been waiting to do the treatment because my neurologist ordered an MRI and then wanted to try actual medicine lol. I told my regular doctor that I use the treatments - but I didn't tell the neurologist so I'm not exactly sure how to tell her that I'm just going to stop the headaches myself. I figured I'd give conventional medicine a try, but once I can find some alternative treatment I am ready to throw in the towel and abort this cycle. My BF (who is incredibly supportive) has offered to start farming my treatment for me - but as you probably know that takes a long time so it's a great solution for next cycle but I would rather not wait until then to end this one lol. The Verapamil was worth trying - and has improved my quality of life by diminishing the severity of the attacks I have - but I still don't get to sleep, and not sleeping has lead to depression and other psychological problems (like desperation). I really appreciate the responses - I wanted to be sure that I was giving the Verapamil a fair chance before judging whether it was worth continuing.

So the saga continues lol. I had my full brain MRI and it came back normal (no surprise there). My neurologist had put me on indomethacin to rule out CPH headaches (a different form of TAC headache) and it ended up giving me a 12 hour long migraine. So she took me off of that. Now we are back to cluster headaches (obviously what I have suspected all along) so she put me on verapamil. I take the lowest dose 3 times a day because I already have low blood pressure. I have been taking it for about 3 weeks now, and though it has given me some relief (I have managed to sleep through about half of the nights since I've been taking it) it has not stopped the attacks completely. I didn't expect 100% relief or anything, but I feel like it's not doing as much for me as it does some people. The attacks I have are less severe now I should add. My question is - Is there something I could be doing to make this work better? Any good tips? Should I take it a certain amount of time before bed? Or should I ask my neurologist of she can up the dosage? Any advise would be appreciated. Also - I am still thinking about trying to abort the cycle with mm - is it ok to take the verapamil while I do that? My next neurology appt is not until the end of March

I am going to try to get my neurologist to convince my insurance to pay for my o2 and if not I will have to switch to wielding oxygen. I can't keep going without it - that's for sure. I haven't had any in almost 2 weeks and it's taken its toll on how I feel as a whole. I just had an attack that had me screaming and I can't decide if it was because it was a particularly bad one, or if it's because I am just so fed up with having them today (it has been a heavy attack day for me). I did talk to my doctor about switching to the injections and he had no problem changing the rx but I have to wait until a month from the last time I had it filled before my insurance will pay for it again. I am nervous about using the injections - I've never had to inject myself with anything before lol. I hope that the neurologist has something worth bringing to the table and all of this wasn't just a waste of time. My boyfriend (who lives with me) has decided that if the neurologist can't help, he is going to just start growing mm - he can't stand to watch it anymore I guess. I wish more than anything that other people around me would understand what is wrong with me - it gets so lonely and it's hard dealing with it all alone. Don't worry - I'm not depressed or anything - I have someone in my life who at least tries to understand and other than this headache problem my life is wonderful. I just mean that it is a very isolating problem to have - and people don't understand why it is so devastating to my life. My mask is the one specifically for cluster headaches from the cluster o2 kit. I bought it online the day the oxygen company called me lol. Thank you for letting me know that there might still be something the neurologist could offer, I've been feeling pretty blah about even going because I assumed she wouldn't actually be able to help me. I will get to see a picture of my own brain though - so that's pretty interesting to say the least. I do apologize if I come off as unappreciative; the further I get into the cycle the more exhausted I am as a whole and the more I feel like I am losing my mind lol. This site and forum have been the single most helpful thing I have ever found, besides my own brain and desperation fueled research lol. Even before I ever posted I have been coming here for years. I could not be more appreciative of all of the advice and help that has come from this site.

My insurance would only pay for 12 doses a month.. which is 6 days worth. Not very helpful. Sumatriptan is considered an off label medication for cluster headaches. The medication information pamphlet that comes with it clearly states that it is not for cluster headache use and hasn't been approved for cluster headache use. So medically it is considered a standard treatment, but to the pharmacutical company (and my insurance unfortunately) it is considered an off label usage for the medication. They would pay for 12 because that is the maximum rx for migraines. I have an appt with a neurologist next week. I found out that the doctors will not give me the calcium blockers because my blood pressure is already too low AND I am already taking blood pressure medication (as states above, in extremely low doses). My doctor referred me to a neurologist to see if they had any suggestion to help me. I feel like this whole going to get treated thing has just been one big long and costly waste of time. But at least it is in my medical records, I have a proper diagnosis, and I can at least say I tried. I would like to report though that I did mention psilocybin treatment to my doctor and he was incredibly open and aware of its usage as treatment. We didn't discuss it at length, but I told him that I had stopped cycles that way in the past and he didn't have anything negative to say about it. So that was at least refreshing.

Thank you everyone for your answers. I've been out of town for a few days and just now getting back to this. I DO have a vitamin d3 diffencience - I was told 8 years ago when I was pregnant (they thought my baby was going to be born with rickets). Unfortunately I take blood pressure medicine for cystic acne (spironolactone) that effects my kidney function, so I would have to have the blood work done before I could take on massive amounts of d3. I do take a normal dosage of d3 daily ever since my pregnancy because of the diffenciency they informed me of (I am a ginger so I don't get much sun... where most people get their vitamin d). Just for the record I was most definitely talking about caffeine and NOT cocaine... your body builds a tolerance to it after prolonged usage. Some of you use energy drinks, I find the pills to be faster and have less sugar. I use caffeine to control my headaches durring the day, and sometimes at night if I get desperate (sometimes being wide awake and pain free is better than trying to sleep and waking up every hour or 2 in pain). I had no idea that the sumatriptan would prevent any sort of unconventional treatment from working - this is the first time I've ever had access to the sumatriptan - so thank you, that is very valuable information to me. I am going to talk to my doctor at the appt about contesting the insurance not paying for the oxygen, but I'm fairly certain they will not budge on the sumatriptan since it is an off label use for the medication. I still haven't decided if I am going to tell my doctor about my "other" treatment options. I am probably going to mention it and then feel it out like advised above. As for his methods - I'm pretty sure he has never had to deal with a cluster headache patient before so there is a good chance he DOESN'T know what he is doing lol. Which may explain why he didn't start off prescribing a preventative instead of just trying to help my symptoms. I don't hold it against him - I've never been treated for cluster headaches either so we can learn together and help each other. I don't think that he was expecting me to actually be having them when I scheduled the appt - they are rare, and even rarer among women. But I went into the appt incredibly prepared - with loads of information and a headache journal that I had been keeping for the last 3 years. I guess I'm lucky he is even trying at all since I haven't had much luck getting help in the past. I, of course, just want this to be over and want to do whatever I can to Maj that happen. Unfortunately I know that it will never truly be over... no matter how many times I get rid of the beast it will always show back up at my doorstep eventually. The forum has been massively helpful - especially for the years I went without medical help. It's how I learned about caffeine helping, alternative treatments, and how I found out that I could use the hyperventilation technique. I could not be more thankful to have a way to connect with other people who actually understand.

They gave me the sumatriptan nasal spray, which worked fairly well, as opposed to the injection because I requested it. When I asked if using the injection would make a difference with my insurance they said no so I didn't have them change it - but if I could get more out of the injection I would be willing to try that. I have only been seeing the doctor for a month and he wanted to see if we could get the headaches under more control (for my sake) before we started any sort of preventative type medication - such as steroids or verapamil - to make sure that I had some sort of abortive measure in case it was unsuccessful. I am the only cluster headache patient he has ever had - he is a fairly new doctor... just out of med school. Which has been beneficial to me because he has been more informed about the condition than most of my long practicing doctors were. But it may be why he is trying to take the safe road instead of throwing every option out there. For a long time caffeine was the only abortive treatment that I had access to, and has been a long time staple for my cycles despite it's drawbacks. I usually start the cycle cutting the pills in half, but unfortunately if I use it every time I get a headache (which I almost always do out of desperation for it to stop) by the second to third month of the cycle I have built up a tolerance and must start using the full pill in order for it to be effective enough in stopping the headache. I usually stay on the oxygen for 5-10 minutes after the headache subsides (as suggested on another post of mine) but since sleep seems to be my trigger it will keep the headaches away for longer IF I'm not trying to go back to sleep (which I always am lol). I have a top quality mask, but only have the regulator that came with the tanks - which goes up to 15ml. I have looked into welding oxygen but with the initial cost being so expensive I have waited to see how much it would be for the Rx, which as explained, has began to be extremely costly as well. So welding oxygen is not an avenue I am not willing to explore. I haven't heard much about LSA - That is also an avenue I am willing to explore. But it leaves me in the same position of having to tell my doctor why my headaches just stopped all of the sudden. I mean, I suppose that happens at the end of a cycle - but 2 months isn't that long, I'm afraid it will diminish his perception of the severity of the problem. At this point I would honestly be willing to take the legal risks to do whatever it takes to make it stop. Being a CH is such a lonely problem to have - nobody understands, not even my doctor (as hard as he tries). I wish that he could understand my desperation - then maybe he wouldn't judge me so harshly for doing it.

So - I have been getting cluster headaches for 8 years. I have episodic headaches; I get a cycle about once every 6 months and it lasts from 3-9 months until my next remission. I have not had medical insurance until recently - so most of the times I could go to the doctor before I was coincidentally not having the attacks (though I mentioned it to every single doctor I've seen since they started). I usually try to withstand the cycle as long as possible - but when I had my longest cycle (the 9 months) I was at the end of my rope and had been on this forum a lot trying to find ways to cope. I finally broke down and tried LSD (I had tried to avoid it because of the legality and the fact that I have a child). It, of course, worked MIRACULOUSLY and stopped my cycle almost immediately. I have insurance now, and started my cycle about 2 months ago - so I started going to the doctor because 1) I wanted my cluster headaches to be in my medical record and have a proper diagnosis, and 2) the legality problem - I don't want to have to explain to my 8 year old son why mommy got arrested for using a medicine that stops her headaches (which he has watched me have his whole life - they started when he was 6 weeks old. It's heartbreaking to know that he has to see it happen.) My doctor gave me oxygen and sumatriptan. I found out that my insurance won't pay for either because they do not recognize the treatments as cluster headache treatments. They would only pay for 12 of the sumatriptan doses (out of 60) and it's $282 for 6 out of pocket. They wouldn't pay for the oxygen at all, so I could only afford 3 E tanks that I have to pay to get refilled every week PLUS the bill from the oxygen company. I'm at the end of my rope. I haven't slept more that 2 hours at a time in weeks. I'm depressed, and having anxiety about going out in public ANYWHERE because I've had the cops called on me while I was having an attack (I seemed pretty aggressive I suppose). I can't eat because I use caffeine as an abortive treatment during attacks - I take a 200mg tablet and it shortens the duration of the attack to about 15-20 minutes (while also using the hyperventilation method). I use my oxygen mostly during the night, but I still have to wake up about every hour, so it helps with the attack duration but not the sleeping issue. The caffeine will keep the attacks away for about 3 hours or so, but obviously prevents sleeping in its own right. I'm going crazy - and nothing the doctor has done has changed anything (except for having access to oxygen in the middle of the night - which has been immensely helpful, don't get me wrong). I guess what I am getting at - and sorry this has been so long - I want to do the LSD treatment again. I NEED to. But I have no idea what to tell my doctor. Do I tell him that the headaches are gone already? Because I worry that that will make it seem like it is not a huge problem for me (and it IS). Do I tell him the truth? Do I NOT do the home treatment and stick it out to see if the doctor comes up with a better option (that isn't so expensive me and my son are going to be homeless)? I know that it's ultimately my decision - but I need some advice. I don't want to lie to my doctor - and I don't want it to seem like the attacks are just a minor inconvenience to me and I don't want help. But I also don't want to tell my doctor something that might make him think poorly of me or not want to treat me anymore. I feel so conflicted about what to do.

I NEVER use the strap for the mask - but I for sure don't want to run all of the oxygen out because I fell asleep lol. I take a blood pressure medication called Spironolactone for my cystic acne - it's the only treatment option I have left because they won't allow me to take Accutane because the cluster headaches give me bouts of recurrent major depressive disorder; which is a huge red flag for Accutane. So any more blood pressure meds are not an option because I am already taking too many blood pressure meds for my very normal blood pressure lol. I also already take D3 supplements every day because I have PMLE - Polymorphic light eruption syndrome - which is a fancy way to say UV rays make me break out in a rash. Since you get most of your vitamin D from the sun it leaves me pretty deficient. I started taking D3 when I was pregnant because without vitamin D your body can't absorb calcium and they thought my son was going to be born with Rickets - so I have been taking it since before the attacks ever started. I usually get a pretty fair remission time - about a year or so. But this cycle started only 5 months after my last one ended, so I suppose it has left me less tolerant towards everything in general.

I do try to use the oxygen for 5-10 minutes after the attack has stopped - but sometimes I fall asleep and I have been really careful about not falling asleep while the oxygen is running - so if I get to where I can't stay awake any longer I will go ahead and shut it off. The Melatonin is a good idea - I already take blood pressure medicine in small doses so I will have to make sure it won't lower my blood pressure (because I don't actually have blood pressure problems - I take it for cystic acne, so it's already making my blood pressure lower than it should be). I will ask my pharmacist.

I tried Trazadone when the headaches first started (before I was actually diagnosed with cluster headaches) because my MD at the time thought that I was just having trouble sleeping and that that was causing them (she obviously did not understand the gravity of the situation lol). In all fairness I had just had a baby 3 weeks before so it wasn't a blind accusation - I was very sleep deprived. It did not prevent the headaches from waking me up - only made me groggy and less alert while trying to deal with them. I have NOT tried taking trazadone while using oxygen.

This is my 7th cluster headache cycle, I have been getting them for 8 years. This is the first cycle I have had while being able to get medical treatment from a doctor - I have been trying to get an oxygen tank for 5 years and this is my first cycle while having one. It works extremely well for me, and so I don't mean to sound ungrateful; it's just been a very long and hard road. My cycle started about 2 months ago and, similar to previous cycles, my headaches are primarily triggered by relaxation - specifically sleep. I am going crazy without any sleep. I keep my oxygen tank beside my bed, but every night I wake up every hour-hour 1/2 with a headache. Sometimes I get fed up with waking every hour and in desperation take a 200mg caffeine pill (something I have found will extend the periods between the headaches for about a 3 hour period - though it's obviously not the best solution to combat sleep headaches). If I fall back to sleep within 15 minutes of taking the pill I can sleep just fine (though restless) for about 3-4 hours before the headaches come back. If I don't fall asleep within the 15 minutes, no matter how exhausted I am I can not stop thinking about 1000 things long enough to fall back asleep. Either way, my chances of sleeping are pretty slim. I work a morning shift job and have 2 younger kids. Not being able to sleep is KILLING me. Does anyone have any suggestions? I also use Sumatriptan nasal spray - but can only use it twice a day separated by 2 hours at the least; I try to use it only as a last resort because I am well aware that using it even this often can be very dangerous (though a risk I am willing to take to get relief). PLEASE - if anyone has any suggestion at all about how I can get some sleep, I would greatly appreciate it.