Trackle Posted January 1, 2017 Share Posted January 1, 2017 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. Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 1, 2017 Share Posted January 1, 2017 Thoughts, some informed, some not so much: It sounds like your sumatriptan is the injectable kind. Here's a way to get more shots from each injector: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ (We have found that it's harder than it looks to break these open as shown in the video, but with a very sharp knife you can cut the injector open in about 5 minutes. We cut about an inch below the seam.) We have found that we get a lower price for Imitrex by not using insurance and using a certificate from a website like www.goodrx.com From what you say, it's a little hard for me to tell whether you'd get a better price that way or not. Sumatriptan nasal spray works for some people, and it's less expensive than the injections. Energy shots such as 5-Hour Energy work quite well for some people , and they have less caffeine than your 200 mg pill. I wonder, also, whether half of your pill would work. You are missing a pharmaceutical preventive -- verapamil, for example, which is not so expensive. Has your doctor considered a steroid taper to see what happens? Probably more importantly regarding prevention, are you doing the D3 regimen? https://clusterbusters.org/forums/topic/1308-d3-regimen/ I know there are some public forms of insurance, such as Medicare, that deny coverage for oxygen, and that insurance companies ration trex ridiculously. I assume you and your doctor have tried fighting this. It sounds like maybe you are getting your O2 from a private oxygen supply company. E tanks are all they will give you? That seems nuts for them and for you. Have you considered welding oxygen, which at least 15% of people with CH use? Issue there would be that you have to bring the tank in to have it refilled. Regarding O2 use, are you staying on it for 5-10 minutes after you have aborted an attack? That can hold off subsequent attacks. And is your system optimized with a high-flow regulator and a top-quality mask (or maybe with Batch's workarounds for those two things)? Melatonin at night, starting at about 9mg and working up as needed, also helps some/many people with nighttime attacks. Regarding your actual question, might it make sense to come at this indirectly with your doctor, just saying you have read that some people use psychedelics such as psilocybin or LSD to treat CH, and you're wondering what s/he thinks of that possibility? The answer might give you a sense of how much you want to pursue it. We've heard of everything from "Stop talking about that!" to "You should try anything that might work for you." The doctor is in a slightly sticky spot because s/he can't legally know that you are using illegal substances. Some take it as a good sign when the doc stops taking notes when psychedelics are mentioned. Have you considered LSA from rivea corymbosa seeds? It's very hard for me to say you should do anything other than LSD, since it worked so well for you, but there is virtually zero chance of mommy getting arrested when using LSA, since the seeds are legal to buy and possess (in almost all US states and many other countries), and the only unlawful part occurs during about an hour in your kitchen while you are preparing them and consuming them. Quote Link to comment Share on other sites More sharing options...
urs Brasil Posted January 1, 2017 Share Posted January 1, 2017 Uff, first hello, second forget your doc... What do you guess your doc represents? God? Police or what? If you found something helping 4 cluster headache take it as we all do as the pain is unbearable! In my country too it is absolutly forbidden, so what? Nothing else does have the power to stop my cycles! I break the law by any means, so what? I'm not at all criminal and no I'm not stupid telling my doc what I take... Cluster comes and goes out off the blue so there is no way for anybody knowing what you have taken! No law on this planet gona tell me what I'm allowed to eat or not, I really do not care! Further more, I' would like to see the ocidental judge putting me into jail because of cluster and mm, rc or even lsd... This is how I handle this particular situation. There is no alternative than suffering tremendously of insane pain and one should take it just because of some printed letters? There is no sientific efidence we harming ourselfes or anybody or anything else when medicating the way we often do. Cluster heads may be some kind off out-laws, kkk so what? Suffering because papa says it is forbitten to take MM? There is easy access to in every country to on this planet. Go and see plac s where cows are feeding in the open field. Early in the morning one goes looking for the spots off cow dung. On the top off the fresh ones one finds small fine fungis... taking around 10 of them does the job too... Hohohoho, off course this is a call to every cluster head to become criminal Somebody calls police please we are mostly criminals... 1 Quote Link to comment Share on other sites More sharing options...
Trackle Posted January 1, 2017 Author Share Posted January 1, 2017 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. Quote Link to comment Share on other sites More sharing options...
urs Brasil Posted January 1, 2017 Share Posted January 1, 2017 Well you even write it by yourselfe... If you really want to suffer, go on. What the hell do you care about this youngster doc? Do you need his plessing? You even confirm having something found helping really nicely on your cluster. So it is up to you and nobody else. But for shure, it is your personal decision if you want to suffer or not. Chfather explains nicely what option are known up until now. Enyoi next attack Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 1, 2017 Share Posted January 1, 2017 Most people can get by with 2mg injections, so that means you would get three from every injector. A few seem to need 3mg, which would of course mean two aborts per injector. (Or you could ask for 3mg injectors, which some doctors are willing to prescribe, or even for a vial of sumatriptan and syringes, which some people can get). You would have to figure out the cost difference, but I'm guessing that one is paying a lot for the useless autoinject mechanism itself. Your doctor's logic for not prescribing a preventive or trying steroids seems odd to me. I'm not sure how you would get things "under control" without a preventive. For most people, the steroids only provide relief while they're taking them (if then), so they are meant as a "bridge" to give the preventive time to take effect. It's also a little hard for me to know how much his "perception of the severity of the problem" actually matters, He's gonna prescribe what he's gonna prescribe, and his sympathy is worth very little to you. People here all know what you are going through; unfortunately your child probably gets it, too, at some level; but practically nobody else will ever really understand. Here's some basic info about LSA, but you should check back with us if you decide to go that route. There is typically no "trip" at all with seeds. But of course no substance is assured to work, and you have apparently already found one that does. https://clusterbusters.org/forums/topic/684-5-lsa-seeds-of-the-vine/ You might not be aware that psychedelics don't work while you are using sumatriptans or steroids. The standard advice is that you have to be "detoxed" from them for five days before psychedelics will work. There is not 100% agreement about this, but it's what the bulk of experiences say. 1 Quote Link to comment Share on other sites More sharing options...
urs Brasil Posted January 1, 2017 Share Posted January 1, 2017 Oh... "...built up a tolerance(caffein or cocain?) and must start using the full pill in order for it to be effective enough in stopping the headache..." But one should know he never ever is allowed to swallow ONE ENtire pill at once! Trackle I really cant take you seriously at all. It rather seems you need a whole other type of medical care. Check with your lokals or even family before creating a desaster here or where ever, what ever. Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted January 1, 2017 Share Posted January 1, 2017 Wow. Trackle is seeking advice and exploring options. No one needs a lecture to abandon conventional medicine or a physician who is actually trying to provide help. No system or provider is perfect (far from it) but if you find someone you can work with and is interested in helping its in everyone's best interest to have a dialogue. CHF made several good points about splinting doses and preventative mess. The oxygen info was also spot on. D3 works for many And has no real down side. I am not convinced in a non research arena labs are needed. First I would make an appeal to the insurance company about the oxygen. Insurance companies routinely reject claims as sport and part of a programmatic process . Once you start an appeal real humans start looking over the claim. If you have a medical diagnosis of clusters there is abundant medical evidence in the literature at the highest level to support high flow oxygen and injectable imitrex. You have to be persistent and it may not seem fair but its a battle that can be won. There are plenty of positive reports using MM, LSD and other non conventional modalities. I believe it is entirely within your right to safely try and use these methods. You do not need an ill informed persons permission. As a young mother be sure to do your homework, control "set and setting" the best way possible and have sitters (one for your child and one for you). Hopefully in separate locations. The discussion with your doctor is optional but if young and open minded it will not hurt. Ask if you can talk about something and not have it end up in your record. Then have a hypothetical discussion about alternative treatments. This can be important if you are on other medications or have a health history of something concerning. It would be unusual for an otherwise healthy person have a problem with a responsible dose of anything alternative. Most report low doses are effective. 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 1, 2017 Share Posted January 1, 2017 D3 works for many And has no real down side. I am not convinced in a non research arena labs are needed. Pebbles', I think you were referring by "labs" here to the blood test for vitamin D level. If I'm correct, I am assuming that your thinking is that virtually everyone has either a clinically low D level or a level that is too low for the D3 regimen to be fully effective. Is that right? I think there are two reasons that a blood test at the beginning and at some intervals later might be valuable: (1) if for some reason the person actually has a high D level to begin with; and (2) if the D level gets substantially raised while following the protocol. I think it's true that in most (all?) cases the effects of too much D can be undone pretty quickly by simply stopping taking the D3, but I do know one person who proceeded with the D3 to excess, without being tested, and experienced pretty severe symptoms that one would want to avoid. Just checking. Quote Link to comment Share on other sites More sharing options...
urs Brasil Posted January 2, 2017 Share Posted January 2, 2017 Trackle do not take my statement to seriouse, I'm currently at my limits for shure.... Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted January 2, 2017 Share Posted January 2, 2017 Yes I was referring to D3 levels. It's pretty unlikely a person with normal kidney and liver function would get into trouble with the regimens. We are looking for a clinical result ( reduced or eliminated CH) so titration of D3 and other elements are the only way to know if the program works. There are the usual caveats about safety but lab tests are costly and I suspect one would get more push back about labs that oxygen. Having solid data is valuable but I would not let the lack a lab value prevent me from using what Batch suggests Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 2, 2017 Share Posted January 2, 2017 Thanks, Pebbles'. And thank you, urs, for your clarification. Sorry it's so darned hard for you right now. Quote Link to comment Share on other sites More sharing options...
registrateyourjourney Posted January 2, 2017 Share Posted January 2, 2017 Dear Trackle, I do not live in the US but in Spain. LSD, MM or other kind of things are illegal here as well. I had a doctor that I told about my ideas and he didn't like it, complained and said I was going the wrong way....so I heve looked for an other. Now I have a young doctor and I tell her everything I do to try to rid of my attacks and that is realy nice to have that trust with her. Honesty seemed the best way for me. At the other side is your diagnose. Please download my app to register your journey and keep a detailed timeline of all attacks and all you do to feel better. Its not a normal Headache diary but a way to write down all you do to feel better and see what you have done in the past. Maeby this way you can "show" your specialist how you are doing.You can find it searching for register your Journey in the Appstores of Android or iPhone. And please, if you have any questions, just ask me. Rogier Quote Link to comment Share on other sites More sharing options...
urs Brasil Posted January 2, 2017 Share Posted January 2, 2017 may be little off topic but not: as far as I know all doctors getting their diploma and therefore allowed to practice the profession "medical doctor..." have to swear on the Hippocratic oath. Meaning, docs are not at all allowed (by them having swear) letting his patients going down upon information patient is giving doc at any time during treatment. So, isn't it that we should be able to openly tell to this fat sack: He dude, I do MM, in order to beat the beast, blablabla... and he would not be allowed to any extend involving any third party or even informing in a way the patient may face problems even legal. Well this of course would not mean somebody could confirm a crime and the doc must keep this information secret but everything related to the security and integrity of the patient and his particular case/sickness. Yes, a murderer confirming won't get doc silence. As far as I know this should be same-same all over the planet. Any doc on the ship? Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted January 3, 2017 Share Posted January 3, 2017 Not exactly sure what you are getting at in the first sentence of second paragraph. There is a supreme obligation to honor the doctor patient relationship. It is pretty close to the confessional in terms of duty to the patient. In fact if the crime is already done (such as murder) the physician can not disclose the contents of the conversation if it was had during a visit for medical care. The only time there is an obligation to disclose is if the person is an imminent threat to themself or others. If a person came into the office obviously intoxicated they probably would not be allowed to drive home and law enforcement might be contacted if there is a safety concern. In the context of sexually transmitted disease there is a public health threat and a reporting obligation to the health department but that info can not be used by law enforcement or the criminal justice system. If someone said they planned to do themselves harm or threatened harming others there is a duty to report. If a patient reports doing drugs (recreational or to treat a legitimate medical condition) that info is privileged if part of the medical encounter. There is no duty to report drug use. Emergency rooms regularly see folks having trouble with illegal substances and they can not turn a person in. In fact such reporting would be an ethical violation and the physician could lose their licence. There is a concern with the electronic medical record and who sees the info in the chart. This is why one recommends asking certain info stay out of the chart. Despite efforts to keep things confidential the electronic format presents real confidentiality issues. I am confident if you have a regular doctor patient relationship and are being treated for clusters your doctor will remember if you have discussed alternative treatments. The doctor can not recommend doing something "off label" (thought many do with appropriate disclaimers) or illegal substances but interested practitioners may work with you on novel, self initiated treatments. By work with you I mean help you avoid drug interactions, review relevant data, give their perspective and provide support for potential side effects. The flip side is that a physician may not feel comfortable with their knowledge of what your doing or don't have the curiosity to investigate the "treatment". For whatever reason they may not want ot treat you or endorse the use of illegal options. Most of the time ths would be someone not interested in treating the problem in the first place. Quote Link to comment Share on other sites More sharing options...
urs Brasil Posted January 3, 2017 Share Posted January 3, 2017 thank you, much more understanding now. second paragraph: "we as patients should be able talking openly with doctors. If I/we have found an alternative out off the normal meds/treatment" But again Hippocratic oath. US based doctors have to do this? And the relationship doctor patient being all over the planet the same or does it differ from country to country? Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted January 3, 2017 Share Posted January 3, 2017 The "Oath" in its ancient form has been modified over time and direct references to abortion, euthanasia and charity removed. In the US each medical school has its own version which graduates take as a right of passage. The sum total of the Oath is "first do no harm". It's sort of the golden rule (love your neighbor as yourself) in medicine. From a licensing perspective each state has a code of conduct of ethical standards practitioners are obliged to follow. Violation of that code could lead to loss of license to practice. The typical state code is very patient centric and emphasizes privacy confidentiality and respect. Quote Link to comment Share on other sites More sharing options...
urs Brasil Posted January 4, 2017 Share Posted January 4, 2017 Quote Link to comment Share on other sites More sharing options...
Trackle Posted January 8, 2017 Author Share Posted January 8, 2017 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. Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 8, 2017 Share Posted January 8, 2017 I really don't think sumatriptan is an off label treatment for CH. It's certainly listed in every official medical guide, along with oxygen, as the standard abortive. (In fact, one of the frustrations is that the medical standard calls for 6mg sumatriptan, making it hard for people to get 3mg injectors, even though that is all they need.) I have heard of people having difficulty getting enough Imitrex covered by their insurance (which is why people will tend to stockpile it when they are out of cycle), but I don't recall hearing very often of insurance refusing to cover it at all. Quote Link to comment Share on other sites More sharing options...
Trackle Posted January 12, 2017 Author Share Posted January 12, 2017 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. Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 12, 2017 Share Posted January 12, 2017 Trackle, Thank you for clarifying my misunderstanding about sumatriptan and insurance. I think in a previous discussion you had thought about using the injectors instead of the spray, because they can be split. From 12 6mg injectors you could get 24-36 effective injections (2 mg works for most people; some use 3 mg). My guess would be that maybe the neurologist will suggest topiramate as a possible preventive. I know we've discussed many other things in this thread, and I won't remember them all, but I hope you'll be able to pursue a better alternative for oxygen with the neurologist (getting insurance to pay for it), or maybe it will make sense to switch to welding O2. And I hope you might find out that the D3 regimen is okay for you to follow. I think that's your best resort for an effective preventive. We've discussed busting with seeds. I remember you saying that you do have a top-quality mask for your O2 use, and I don't think we followed up on that, so I'll just mention that as far as I know this is the only mask made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit. I think we discussed melatonin, too, but I really don't remember where you were on that. No need for you to respond to any of this. It sounds like your are, very reasonably, tired of talking about it. But of course I, and others, would like to know any way we might be able to help. Quote Link to comment Share on other sites More sharing options...
Trackle Posted January 16, 2017 Author Share Posted January 16, 2017 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. Quote Link to comment Share on other sites More sharing options...
urs Brasil Posted January 16, 2017 Share Posted January 16, 2017 "...the further I get into the cycle the more exhausted..." Well known to us cluster heads isn't it? Sometimes a dark hole with no light at the end. The beast eating us in small bites and there seems to be no end or valuable solutions. Yes, I make the same experience others probably not believing in our devastating situation. But this is completely normal. For an outsider it is schier impossible/very difficult understanding our pain. They do not suffer from this repeating pain. The endless repeating attacks are what put us down hard. ​Always keep in mind, we are dynamic not static. So no, it won't be forever. Things will change by the law of nature for sure. I personally think the most important is not to live in circles. Always stand up and walk no mather how and in which direction. Standing up and walking is at least to me one important principle. (lost in the wilderness? Do not wait for help from outside. Stand up in any circumstances and walk.) Living in circles and staying where I'm am seems to me a very bad strategy. 1 Quote Link to comment Share on other sites More sharing options...
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