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ClusterBusters

Bthr22

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  1. Bthr22

    Is it worth going straight to a specialist?

    As miserable as it feels, in a way, it is kind of a relief for me. I now have a direction I can focus and I know that I have resources to manage these headaches and get some semblance of relief, as well as an awesome community. I don't feel as hopeless, or like I have nothing to do but endure each headache. Like I now have the power to make a bad situation better. I'm excited to learn more about CHs in every way I can. We have an older machine, much more basic, with a million wires hanging from the cap. You have to stay very still for it. It's a total pain! We have been troubleshooting an issue with the hardware creating excess noise, so I have had to hook myself up by myself. It gets messy for sure. Luckily, the gel is all water soluble, so a quick wash in the sink gets most of it out. An asymmetry in amplitude kind of makes sense though. You have this very large activation in the trigeminal nerve on one side, plus who knows what else is being stimulated on that side. It seems logical that you would have a higher electrical output on that side, since that's all EEG measures is neuronal activation. Thanks for the correction! I read somewhere, although I can't remember off the top of my head, that nicotine can induce an attack in some.
  2. Bthr22

    Is it worth going straight to a specialist?

    Beta waves are associated with being active and wakeful. https://en.wikipedia.org/wiki/Beta_wave Your brain's electrical activity is emitted in cycles and is measured via EEG. The electrodes use conductive gel to carry that minute electrical current (measured in microvolts) into the computer. The waves your brain makes vary in frequency from about 0.5 cycles per second to 100 or so. Different frequency ranges are associated with different states of wakefulness. For example, Delta waves are the lowest frequency, up to 4Hz, and are seen in deep sleep. Theta, the next slowest are associated with deep meditation and near sleep. Alpha is present while awake and resting, and beta with being active. There are a few others, but their functions are more complex and deal with different cognitive states. Altered beta waves could be several different things. Beta waves are relatively symmetrical in amplitude between hemispheres (similar voltage recorded between electrodes), so maybe there was an asymmetry that is not normally present. Brainwaves also go through periods where the waves synchronize and desynchronize, so there could have been an abnormality in that. Probably some other possibilities that I'm not aware of. Who knows! I'm sure EEG technology has changed drastically since the 70s too. A couple drawbacks to EEG is there is very low spatial resolution, so you can only get an average of what's happening over a relatively large area of millions of neurons for each electrode. But there is great temporal resolution, or changes over time. Another drawback is that the readings are very prone to noise. Any movement, blinking, coughing, writing, etc. show up as noise on the waveform. That makes it more difficult to see what you are looking for. There have been some good advances though! Our new system uses a wireless transmitter to send the signal to a receiver on the computer, so the patient or participant can move freely about the room and perform a wider range of tasks. The software also has the ability now to remove noise from the recording, so unwanted blinks, for example can be removed when processing. I'm curious though to examine how a person's brainwaves vary during changes that are regulated by the hypothalamus. For example, the hypothalamus is important in regulating sleep, and releasing melatonin, as well as controlling the output of the pituitary gland. We know when a person is entering sleep due to a decrease in brainwave frequency. Is there an observable change in other aspects of brainwaves, such as symmetry or synchronization? Then, examining common triggers for CHs, do things like alcohol consumption or nicotine cause similar changes in brainwaves that may lead to an observable connection? Nothing may turn up, or may end up being useless info, but you don't know until you look.
  3. Bthr22

    Is it worth going straight to a specialist?

    I have a Costco about 10-15 minutes up the road from me, so that might work out perfectly. I don't have a membership, but I'd thought about getting one when it first opened. This might be a good reason to invest in a membership. Do you know if Batch has said what he usually pays for everything usually? I looked up the low histamine diet, and it looks like most of that stuff is food that I like to eat, so maybe I can incorporate a bit of that into an overall healthier diet (something I need to do anyway). Great idea! I'll ask him about it. It's probably a long shot. The hospital may have an issue with loaning a tank to a family member living 2 hours away. Worth a shot though! I'm glad that worked out for you and you were able to use it to your advantage when talking to your doctor. I'll be sure to post anything I can find!
  4. Bthr22

    Is it worth going straight to a specialist?

    Great, I'll start looking at the store next time I'm there! Fortunately, I've never had much issue with pollen and allergies, so I could probably hold off on the benadryl for now. I can always add it later if needed too. I'm sure I'm one of those people with very low D levels. I have a natural light lamp that's supposed to help raise D levels because I was having some mild seasonal affective disorder symptoms around January every year. That hasn't really been an issue the past couple years. I think that likely also had to do with where I was headed with school at the time. I'm now on a different path, and much happier.
  5. Bthr22

    Is it worth going straight to a specialist?

    CHF, I'll give those links a look on google. The first thing I'm going to do is get a conversation started with my dad and get him on board. I'll discuss with him that I would like to start by seeing a headache specialist, since I am at the point where I know these headaches are severe enough to start higher up on the chain of doctors. Then I will start sourcing the supplements for the D3 regimen, and get that going. A quick question about my interpretation of the regimen described in the link you provided, the table is all the supplements and the dose for each day? Would I want to begin with the accelerated dosing as described? The nice thing about being a student at a university, is I have access to all the university libraries and free access to all of the major research databases. So I will definitely see what kind of peer reviewed research I can dig up and hopefully bring back some information to report! I'm also working in an EEG research lab on campus, so I think it would be very interesting to record as much data as possible during an attack. We have a lot of capability in terms of what we can record. Our newest machine records EEG brainwaves at nine different sites, as well as EKG (heart rate). We have other units to measure physiological responses such as galvanic skin response, blood pressure, and other neat things. I would be very interested to see whether there is significant hemispheric asymmetry in brainwaves between the affected side and unaffected side. I'm not sure what that kind of data would reveal, if anything, but it would be interesting to gather some recorded physiological data of an attack. Sorry, thinking out loud here. Spiny, I haven't had a chance to do the pupil check yet, but I definitely will the next time a hit comes. I seem to remember going into the bathroom at work and noticing a difference in my pupils, but I could very easily be misremembering a detail that small. That makes total sense explaining the weird vision though. I'll pick up some 5 hour energy next time I'm at the store. I've never actually tried it, if you can believe it. I've tried drinking coffee or a Dr. Pepper, but as I've seen here, that generally isn't enough to help. As far as work, I would probably try to work something out where I keep O2 stored in my truck and if the caffeine doesn't stave off the attack, I'll go out and use that until the attack subsides. I would just rather avoid the hassle of having to explain why I suddenly have an O2 tank with me or risk having it stolen. You wouldn't believe the questions I got when I kept my water in a Camelbak instead of a jug. They all thought I was carrying an oxygen tank, ironically. Thank you both for the warm welcome. I am very glad I came upon this forum. Hopefully I'll be able to get a diagnosis soon and get the prescriptions I need and begin managing this as best as possible. Ryan
  6. Bthr22

    Is it worth going straight to a specialist?

    Wow, thank you CHfather for the thorough response! Like you described, my biggest concern is having a doctor decide that maybe I just have migraines or sinusitis and all I need is antibiotics or meds for migraines, or have reservations about prescribing O2 and deciding we must exhaust all other options first. It is dreadful thinking of that and having to go through a cycle or more with no relief or having to fight for things that generally work. Fortunately though, my dad is a physician's assistant for the VA hospital in Dayton. So he should have some connections within the community. Plus, dealing with patients on a regular basis, he will be more understanding and sympathetic to what I'm feeling. I haven't yet discussed my headaches with him. I've just been doing this research and dealing as best I can on my own. Another concern I have is dealing with work. Management won't send me home just for a headache, and they won't understand the severity either way. Like I had mentioned, the only way of getting cut is if the volume is light enough and we have enough staff after offering the higher seniority people the chance to go. So seeing a specialist at least gives me some professional information I can use to determine a course of action. UPS is also unionized, so I will be able to use my union steward as a resource in compromising with work. Unfortunately, your links don't work. All but the D3 link lead to pages that are not found. Possibly they have been moved or archived? Either way, I'll continue looking around the site for information. Is there any research I can read such as published journal articles in which I can familiarize myself with current theories of the mechanisms causing CHs? What I've read so far is the current thinking is that an abnormality in the hypothalamus causes dilation of the carotid artery, which puts pressure against the trigeminal nerve, triggering pain. Coincidentally, I am a neuroscience major hoping to go into medicine and neurology, so I'll be very interested in reading as much research as I can about the causes and triggers and mechanisms of the onset, as well as treatments. Right now, I'd prefer to avoid busting until other treatment avenues have been explored. I wouldn't be opposed to it, but I've never done anything like that, even recreationally and it scares me a bit. Probably just due mostly to the taboo nature. Thank you again for taking the time to type out such a thoughtful and in depth reply. I can't imagine trying to deal with this without resources such as this or going from doctor to doctor without being taken seriously. I'll give my dad a call, or even go visit him and discuss what's going on, and he can help me set up an appointment with a headache clinic. In the meantime, I'll continue researching and see if I can get a blood test for D3 and get started on that regimen ASAP. Ryan
  7. Hello, I just discovered this forum yesterday. I am becoming more and more convinced the more I'm reading that the headaches I've been experiencing are cluster headaches. I want to see a doctor, but I'm afraid that if I see my family's PCP, or just a local neuro that my concerns won't be taken seriously. I don't want to go in and be written off as migraines or whatever, considering CH is relatively difficult to diagnose. From what I've read, with no test or scan to detect the issue, diagnosis just relies on a description of the patient's symptoms (and I'm a newb on the subject and still learning, so please feel free to correct). I at least want to explore all possibilities. I would like to post today with a description of my headaches and get a general opinion if what I'm experiencing may be cluster headaches. I'm 24 years old and these headaches have been going on for the last 1.5-2 years. Bear in mind that I have only just begun to consider the idea that I may be suffering from cluster headaches within the past week or two, so I'm trying to remember all the way back to when these first started. I have just been writing these headaches off as stress related due to coinciding with the school semesters coming closer to the end, but the continuation of my headaches into the summer and winter breaks have made me question that a little more. First, they seem to be cyclic, occurring from roughly mid-late March into mid June, and from mid October through December with pretty much no headaches in between. During these times, they seem to be less frequent earlier and later in each cycle, with only 1-2 per week, and up to once or twice daily during the middle (i.e. a bellcurve). They always begin around the same time of day, 4:00-4:30pm or so. I always can tell when a headache is about to come on. I will feel a tension on the right side at the base of the skull at the root of the sternocleidomastoid muscle, which connects at the skull behind your ear, and runs down your neck toward where your collar bones meet. That muscle will have a sudden tension, and within minutes, ~15, a searing pain blooms behind my right eye, as if someone was sticking an ice pick behind my eye. The pain spreads quickly to my sinuses above and below the eye, like being continually pounded with a rock or something. The pain spreads to my right temple and the top of my head, like frontal lobe area. On the worst days, the pain will spread into my upper and lower molars. The headache is always isolated to the right side. I'm actually having trouble finding the right words to describe how it feels. Like a burning pain, but more than that, and like a pressure, but more, and a stabbing, but more, if that makes any sense. When my headache is in full force, my senses seem to be less sensitive on that side. My right eye is less sensitive to light, and it feels as if I'm wearing a pair of sunglasses with only one lens ( the lens being over my right eye). Sounds on the right side feel as if I'm listening through a wall or with a ball of cotton in my ear. I'm not sure if I have constriction of the pupil on the right side, but my eye tends to be watery and everything on the right half of my face feels saggy or difficult to move. On the worst days, a headache may start earlier in the day, around noon or so, then die down after a while before flaring back up again around the normal time. Every headache lasts 5-6 hours, sometimes an hour or two shorter with a break in the middle where the headache is a duller shadow before flaring back up. Unfortunately, when I feel a headache coming on, I am usually on my way to work, so I'm unable to call off at that point. I sort packages for UPS, so I spend 4-5 hours in a bright and loud environment doing very physical labor. Some days I am able to get sent home early, if we have enough staff to handle the volume for the day. Most days though, I'm forced to work through the headache. It is honestly the most miserable pain I've dealt with. I am stuck in a place with no significant room to move, so I end up just turning in circles, squatting then standing, and fidgeting when I'm not buried in packages. Sometimes I just lay my face against the cool metal of the machinery. Cognitively, I am running at a bare minimum, thinking of nothing but this headache. As a sorter, I am reading zip codes (~1500/hr) on packages and sending them to the correct destination. The labels I'm reading are barely registering in my head. I have been near the point of leaving work at the risk of losing my job because the pain is so unbearable. It seriously takes every ounce of will power I have to make it to the end of the day, and I only do this because I can't afford to not have this job. I have cried due to the pain, snapped at coworkers. There is no relief during this time. The headache will rage full force usually until 10pm or a little later. When I'm forced to work the full day, I will stop at the safety office where they stock disposable ice packs. I'll take two or three with me and sit in my truck for upwards of 30 minutes with the packs on my face and head, which provides a minute amount of relief, so I can drive the half hour it takes me to get home. At that point, I take a shower in the coldest water I can stand, grab another ice pack and try to go to bed with the pack over my eyes. Usually by the time I get home, the headache is beginning to wane. On a positive note though, when the headache does finally let up, I usually get some of the best sleep of my life. Ice packs are the only things so far that provide relief in any way, and it is usually just enough to let me function at the bare minimum. Ibuprofen does nothing. I was regularly taking 1000-1200mg doses at a time, which is very dangerous for your digestive system. I have tried Tylenol Migraine with no success, as well as prescription muscle relaxers. I've seen chiropractors with no luck. I usually drink 1-1.5 gallons of water each day, so I'm not dehydrated. I've tried cutting out soda as well, and that seems to make no difference. I read that tobacco and alcohol can be triggers. I don't remember any instance of alcohol causing a headache (not a hangover) off the top of my head. I don't smoke cigarettes, but occasionally, maybe 2-3 times per month will smoke hookah with my roommate. I distinctly remember smoking once during the last period I was having headaches (probably in May), and the smoking seemed to trigger a fairly bad one. The last time I smoked was roughly 2 weeks ago with zero issues. I don't know how much more of that I can take without some kind of answer as to what is actually going on. I haven't had any headaches for probably a month now, but I know that within the next 2-3 months, I can expect them to start popping up. I'm to the point where I am beginning to feel nothing but anxiety and dread at the thought of dealing with a headache again, especially while stuck at work. I will say, though, that I am not suicidal. I haven't ever considered ending my life to stop these headaches, which I understand is relatively prevalent hence the nickname "Suicide Headache." However, the thought of bashing the right side of my face in with a hammer often sounds like a better alternative and might give some relief. So, as people who are suffering from cluster headaches and managing them, do my symptoms sound like cluster headaches? Is it worth my time and effort to go straight to a specialist? I'm in Ohio, which I didn't see any in the recommended doctor list. So I would have to travel, and likely take time off work and school, which I am perfectly fine with if I can get some answers. Would it still be worth the investment to see a specialist if you think this sounds more like migraines or something else? I have been reading up on some various treatment plans, like O2, caffeine, various drug injections. I've seen that D3 plan mentioned in several threads, although I haven't had a chance to look through the details. I am more than willing to try pretty much anything if it will help. I would even consider some of the alternative style treatments like psilocybin, although probably as a last resort type thing. I'm sorry for such a long winded post. I've been thinking about these headaches for a long time now, and this has been the first real bit of information that has seemed to shed some light on how I'm feeling. This has been my first real chance to write down how I feel about everything in any kind of coherent way, as well as chronicle what exactly is happening when I get a headache. I'd like to begin a journal to record the frequency, severity, and characteristics of all my headaches, as that might help me make sense of everything. Thank you all for your time and effort in reading this. I appreciate any comments and opinions you may have for me. Ryan
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