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So hi. Clutching my head on day 3 and here I am...


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I have a couple questions for you guys I bolded if you don't mind...

Sure, no official word from any doctor saying I have it, but after doing a lot of research on my current symptoms I find myself here...

Damn my jaw feels so achy and tight. The left, and only left, side of my brain/face/head has been going in and out of super duper pain mode, rapidly. Like, pain mode pain mode, is this even real life pain mode. I feel out of my freaking skin too like my hands are tapping and my toes are clenching. Pacing back and forth seems to help calm my nerves.

But I watch YouTube videos of people having attacks and they are completely debilitated, holding their head and screaming. I might be cradling my head and rocking back and forth, but I don't think I'm experiencing the same levels of pain they are. I'm currently at work and I was able to hold my myself together long enough to get through a short call. It was hard though.

I've had two other pains in my life I would describe on the mind numbing, astronomical, 9/10 on the pain chart level. To preface this, I have broken both arms at the same time, and it doesn't come close to landing on this list of my top 2. My top 2 are the types of pain where my mind ceases to create coherent cohesive thought, near blackout pain.

In second place, I have a reoccurring pilonidal cyst. Don't Google that, unless you sit down a lot, then do, because you might develope it. Words can't describe how painful that is. A nurse asked once when I was in the hospital room, and I meekly pointed to the pain chart between the 9 and the 10 with tears in my eyes. Completely debilitating.

In first place I have had a few sexual headaches, scientifically known as coital cephalgia. These headaches the most ridiculous, stupidly, mind altering, painful experiences of my life. Shut down mode, lay in a dark room and contemplate if something else other than pain exists. When I see YouTube videos of people having cluster headaches, that's EXACTLY what happens to me when I have a sexual headache, only with a little less fidgeting.

I said all of the above because I have a few questions if I may of this fine community.

Question one: What do you think the likelihood of me having Cluster Headaches is?

Symptoms: 31yo white male, overweight. Started having pretty bad headaches 3 nights ago, figured it was a hangover. Noticed these headaches affect only one side of my head, seem to spread down into my top jaw, and makes the area where my jaw is hinged feel incredibly tight and achy, but still movable. Also intense pain in the left brain area. Quickly onset, then fading, but will come back in what I first described as waves of headaches, rolling in one after the other. I have had a really jacked up sleeping schedule for the past 3 years, and I've been a night person for the last 15 at various jobs. (irregular circadian rhythm) During the waves of headaches I fidget around a lot, feeling out of my skin. Yesterday while I was sleeping during the day (not a nap), I woke up to an intense series of headaches that didn't stop for about an hour and 1/2.

Question 2: Can cluster headaches just hurt sorta really bad? Like in my description above, I don't think I'm hitting the levels of pain I see on YouTube but it does get up there. and if this is the case... Will they get worse?

Question 3: has anyone here had both sexual headaches and cluster headaches? How do they compare?

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Hi Amphs,

Welcome to the group, sorry you have to be here.

I'm not a doctor, so can't, and won't diagnose you. But from what you describe, you seem to have many of the hallmark signs of clusters. But, there are also SUNCT and PH (Paroxysmal Hermicrania), which are also really bad, one sided and look a lot like Clusters. These three headache types combined are called TACS (Trigeminal Autonomic Cephalgias) - that translates to 'no fun at all'.

The OUCH site has some really well put together information on TACS, focusing on Clusters. It's a good resource: https://ouchuk.org/cluster-headaches-overview

I've had clusters for 8 years now, all year long. There are 2 types of cluster sufferers, Episodic and Chronic. Episodics tend to get attacks once a year, or once every 2 years, etc. The attacks may last weeks or months before going back into remission for a year or so. They typically get them the same time every year. Chronics, those like me, don't have that period of remission. My longest period between clusters has been 23 days, but normally it's 3 - 10 days between attacks, if I'm lucky. I can have periods when I get them almost daily.

As far as intensity goes, it varies A LOT.  On a 1 - 10 pain scale, where 10 is the worst cluster, most of mine are 3 - 5, and most last less than 15 minutes, sometimes just a minute or two. But I also occasionally get 10s, a couple of times have even had a 14! And sometimes they last hours.

When I have a 1-2, they generally last a few seconds to a minute or two, and will make me pause in my conversation or sit down. A 3-5 lasts longer, 15 minutes give or take, and I'll go to my room and lay down. A 3-5 cluster makes me stop whatever I'm doing. If I'm driving, I have to pull over. Anything greater than 6 will have me in tears and rocking back and forth or pacing the room.

Pacing is a common attribute to clusters. It's tough for most people to sit still when attacked, although I tend to curl up on my bed and rock back and forth, unless it's a really bad one.

This makes clusters very different from migraines. With a migraine, you want a quiet, dark room and no movement. Light and sound rarely affect cluster sufferers, and movement is usually good.

Indomethacin is a pain killer that is VERY effective on SUNCT type headaches, but doesn't touch clusters. It's one way to rule out if you have SUNCT, but it doesn't sound like you do.

If you have clusters, get your hands on an O2 tank. It is the best abortive going, and one that I don't use. Most of mine are too short as it takes 5-10 minutes for the O2 to really kick in (someone correct me if I'm wrong). My clusters would be well gone in that time. But, if your's lasts 30 minutes or more GET O2! Someone else here will be able to give you more advice.

Other things to use to try and stop an attack: an energy drink - Red Bull, Monster, etc. Coffee, hot shower or cold shower, hot cloth or cold cloth.

There is also a vitamin regimen that many find helpful in preventing attacks. We affectionally call it the Vitamin D3 Regimen, although it's creator has officially named it the Anti-Inflammatory Regimen, and if you have time to kill, you can read the whole history of it on our sister site:http://www.clusterheadaches.com/wwwboard2/index.html

But you can also find a synopsis here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

There is also, of course, Rivia Corymbose Seeds (RC Seeds), Magic Mushrooms and LSD (to name a few). I can say, without a doubt, that I'd be dead now if it wasn't for RC Seeds and Shrooms.

Sex headaches suck big time! I've had a few, and have had clusters triggered by sex, also not fun. Generally, no other headache comes close to a cluster. I suffer with chronic daily headaches and migraines, and they are peanuts compared to clusters.

Do you drink? If so, does alcohol trigger an attack? As a guess, I'd say 90+% of cluster headaches can't touch alcohol while in a cycle.

MG's rule of thumb: No two cluster sufferers are the same, and just as soon as you figure yours out, it changes.

Hang in there,

MG

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Thanks for the reply MoxieGirl. You said you have had sexual headaches? The kind that go from the base of your neck upwards and the just explode in sheer pain?

Those almost damn near kill me, and if these cluster headaches are worse I really hope I don't have this. Could they be the same thing or like a similar conduit of pain? From what I've read about them, shrooming is also a very affective treatment.

I suppose I shall find out if I have them today. This is day 4 now, in the AM. I am about to sleep for the day so I can work tonight. If I get woken up around noon again today with intense headaches, I don't know... This disease is kind of terrifying.

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I guess I'm not curious if they are the same thing. You said a sex headache triggered a cluster headache? Could you tell a definite difference between the 2 types of headaches?

I just think it's interesting that psilocybin seems to be a non-conventional treatment for sex headaches as well, and when it happened it was basically thought stopping pain. I am curious if the 2 headaches are related.

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Hi Again,

Technically, I can't say for sure I had coital cephalgia. I rarely get headaches in the back of my head, nearly all of mine are in the forehead, eyes and sometimes the top of my head. Physical exertion can be a pretty major headache trigger for me.

Migraines run in my family. My migraines are felt in both my eyes, like they are being squeezed by a vice. I am ultra sensitive to light, sound, movement, smells, temperatures, touch.. pretty much every sensation is amplified to an unbearable level. My migraines can last hours to 7 days.

I also have daily chronic headaches, which in reality means I get a headache about 5 days out of any 7. These are nearly always in the forehead, although can be anyplace in the head. They are sharp and annoying. A 10 on my headache scale is about a 3 on my migraine scale. My longest ever headache lasted 7 months, non-stop.

Then, there are the clusters. They are like an explosion in the eye, just one eye. Well, normally. One of the diagnostic criteria is that clusters are always one sided, but don't believe everything you read. I have had 2 clusters that spanned both sides of my face. Or, perhaps, I had clusters at the same time on either side of the face. Guess that's possible.

Sometimes clusters can come on suddenly, like being hit with a baseball bat in the eye. Sometimes they come on slowly and build quickly. Sometimes I can have a headache that lasts 1-2 hours before the cluster. The pain itself are often hot, like red hot nails being plunged into the eye and twisted. Sometimes it is like my skull is being cracked open with an ax.

My clusters ping pong from one side of my face to the other, but some people ALWAYS have them on the same side. Apart from the extreme pain, there are additional signs it's a cluster.

Your nose will run on the same side of the face as the cluster.

The eye will water, like you're crying on one side of your face.

The eye, and sometimes that whole side of the face, will droop.

Often, my eye is very bloodshot after the attack.

After the attack, I used to always have a post-traumatic stress attack. This involved 20-30 minutes of whole body shaking and crying in absolute terror. Also, my body temperature would go from hot to cold to hot, and I'd be extremely thirsty. I once likened it to being a child whose father would occasionally come home drunk and beat the child senseless. That kind of fear is how I felt after a cluster attack. I say felt, because I hardly get them now since taking mushrooms.

A 10 on my migraine scale is about a 3 on my cluster scale.

So, how I tell them apart is partly by the pain, but also how long they last and where they strike.

Mushrooms help with my clusters and my migraines, they don't touch my daily chronic headaches. Will they help with sex headaches? No idea, haven't heard it mentioned before, but they are a very uncommon headache.

MG

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Well update: I slept all day today and I did not wake up in severe pain like I did yesterday at noon. So that was good. I woke up feeling great and refreshed, like I hadn't slept in a few days which was true.

I felt pretty great for my 'morning' which was 4pm-630pm. Drank some coffee and drove to work. Jaw starts to ache about 1/2 way. Uh oh.

Get to work. Log in, all that jazz, whole time my jaw is getting tighter and tighter. Left side of my head, top jaw, feels like where the bottom and top of my jaw hinges together, it feels like that area is reeeaaaly stiff and achy, getting more and more so, but I can move it freely without pain. Like it is super stiff without being stuff at all.

It's now 732pm and my jaw is not agreeable with me. It feels kinda radiating into surrounding areas, starting at my left jaw hinge.

Every CH I've read says it feels like an explosion of pain behind the eye. I don't have this, I don't think, or it I do, I've yet to experience a 14 on the pain scale as its called. I work 7pm til 7am so here's to hoping it'll stop.  :(

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This is insane, frigging ridiculous. This hurts, I hate this.

Pain level is like between a 5 or 6, kinda hard to focus, but it will seemingly randomly spike to a good solid 7 for a minute or 2, subsiding back. By solid 7, I mean head down on my desk, rocking back and forth, unable to really focus. I'm not deliriously, moaning in pain, but if you are talking to me, I'm not hearing what you are saying, mind starting to not work right.

Wish I could take some time off right now.

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Amphs, I can't say for sure that you have CH (it doesn't really sound like it to me, but I'm not a doctor).  Moxie has given you a lot of great information.  Time for you to get to a headache center (regular doctors are almost certain to be useless, and even neurologists are generally not very good at unusual head pain -- but since headache centers usually have long wait times, start where you can).  As Moxie said, you might try drinking down an energy shot (5 Hour Energy, etc.) or energy drink (RedBull, Monster, etc.) at the first sign that the pain is coming on.  This does help a lot of people with CH, and I'm just figuring that it won't do you any harm to try.

Hard to know what else to suggest.  As Moxie also says, an indomethacin prescription can pretty quickly rule in some things and rule out others. 

I hope others will have something more useful for you.  Very, very sorry for the way you're suffering right now.

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Have you done any research into Trigeminal Neuralgia? That tends to occur more in the jaw/face than eye. Trigeminal Neuralgia is the only other condition I know of that I'd say comes close to clusters. But TN and CH act on the Trigeminal nerve, just in different places.

You need to be talking to a doctor, ASAP.

MG

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I have looked into that condition MG a little, even before coming here. I show less signs of that being the case, my skin isn't extremely sensitive in that area like it is for those sufferers. My jaw aches but that is more like a warning sign something is about to happen in my entire left-head. The actual pain I feel is hard to place because it is so,  just, ridiculous.

Tonight was worse. I got to work at 7pm and I was having full blown attacks from then until about 1130pm. There were times I was sobbing. I mean... I'm a guy, and not just any guy, I'm like 6'3" and built like a football player, I'm a big dude. I also kind of have a stern demeanor, and, it's just weird. My co-workers are being nice to me at least, I've had a kind of rough year this 2015.

And again, during the pain tonight, I was just almost twitchy antsy, moving my chair around, rocking my body, rubbing my head against my arm and in the nook of my arm and clenching my fist. Pacing around semi helped.

I am planning on seeing a doc soon MG. I'm getting through tonight at work. Tomorrow is Sunday so a doctor might be hard to find. I'm worried about the drugs they will want to give me though. I've read bad stuff about some of the shots and what it does to your heart.

Besides, I may or may not have, uh, known about psilocybin for years now. If that's the cure then that's really no problem.

It's 3:45am where I'm at, and my jaw got kinda achy around 1:15 but nothing happened. It's weird, these waves of headaches seem to be on a very tight 22hr cycle at the moment. Maybe not.

Sorry for all the walls of text. I'm honestly kind of scared right now. 5 days ago I didn't show a bunch of symptoms for something nicknamed "suicide headache" and now, out of freaking nowhere, I do. At least they are just symptoms for now.

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My heart goes out to you Amphs.

Striking like clockwork is another Cluster indicator. Clusters are controlled by the hypothalamus, which controls body temperature and the body's clock. So people who get them, tend, to get them same time of day, same time of year, etc. Not always, but it is pretty common. When mine started, it was every Tuesday evening at 7pm or 7:20. If it was 7:30 and I hadn't had an attack, I knew I was pretty safe for a week.

The issues with the heart are really only a concern if you overdose. The problem is, because our pain is so bad and so frequent, it's easy to overdose. But if you take it as prescribed, shouldn't be a problem. Your doctor will know better.

Personally, I never got on well with any of the doctor prescribed meds. Always had side affects or were a waste of time - but that isn't to say it isn't worth pursuing. Until you have a clear diagnosis from a neurologist that it is clusters, busting with shrooms may also be an equal waste of time.

On the flip side, if you have access to them and have the experience to use it safely, it's not going to hurt anything.

There are often 'slapbacks' after the first few busts. These can be quite intense, so if things feel like they are getting worse, that's a good sign. But they only last a few days. 1.2 gram of cracker dry shrooms is a good starting dose, and effective on clusters. You don't need a massive trip or anything. If you feel like you've had a couple of beers on an empty stomach, that is about the right amount of tripping required.

Have you had any head trauma in the last year?

MG

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Thanks again for taking the time to read what I have to say. A lot of it is just mental spew, with me trying to figure out what is going on.

CHFather I have not. For some sneaky reason I think caffeine might be triggering them, or helping too. I haven't tried drinking caffeine during one yet. This could just be completely coincidence though. I could be just drinking coffee and then getting them, and the coffee had no impact. This might be an indication that I don't have them, which I'd be OK with.

MG No head trauma to note. As much as I would love for these attacks to stop, I'm not too sure I'm going to try shrooming without a neurologist giving me a prognosis. I'm worried about shrooming out to fix CH when I could have a tumor or swelling or something.

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Hey Amphs

Sorry to hear you're in pain

I am NOT a doctor and this is NOT a diagnosis

First thing I'll say is that I had/have a reoccurring pilonidal cyst - between my butt cheeks. Before I had surgery to have it "cored out" I was literally blacking out from the pain just from walking. I think it still rears (pardon the pun) it's ugly head once in a while, but never gets serious, then goes away again. I would have to say that the pre-surgery cyst pain was on par with my worst cluster headaches.

Restless behavior and being awakened from sleep can be a reaction to the pain caused by CH. Are you waking up to go to the bathroom then getting a head ache, or is the pain waking you up?

You mention sensations of pain/stiffness in your jaw. I recommend consulting a dental professional regarding TMJ/TMD as this could be causing your pain.

You should consult a medical professional regarding your sex headaches. Issues caused by these headaches can hang around for up to 6 months after an occurrence. Sex headaches can also be an indication of more serious underlying medical conditions that may be discovered through MRI's/CT's/MRA's etc.

Take care and keep us posted

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Hey Pete.

Yeah when I was reading up on cluster headaches, the term "most painful" was used so naturally I wanted to try to compare it to something I've had before that was absurdly painful. Pilonidal seemed like a good candidate.

I've only been awoken from sleep with a headache once. (I'm only on day 5 of having symptoms so who knows I may have more) The headache attack definitely was what woke me up, it wasn't a bathroom break gone awry, it was going from peaceful slumber to stumbling around out of bed clutching my head wondering what the hell is happening.

Thanks for your help

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Hey Amphs

Since this seems to be in the early stages my best advice to you is to start keeping a highly detailed headache journal. Keep track of: what time each episode occurs, location, level (1-10), duration of pain, sleep habits, diet changes etc. This will help the medical professionals have a clearer understanding of what your dealing with. I am keeping track using a calendar and one of the many FREE apps that are available online.

Take care

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Amphs, most people eventually find that their intuition about good and bad things to do turns out to be a good guide.  Given that, I still would say that in my completely nonmedical opinion, the most likely thing that's happening is that you are drinking coffee and you are getting head pain, not that you are getting this head pain because you drink coffee.  If you decide to try something, note that for many people with CH, the energy shots/drinks are considerably more effective than just coffee -- it seems it's more than the caffeine, and likely has something to do with other energy-drink ingredients (taurine is often suspected of being the one that helps).

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Since this seems to be in the early stages my best advice to you is to start keeping a highly detailed headache journal. Keep track of: what time each episode occurs, location, level (1-10), duration of pain, sleep habits, diet changes etc. This will help the medical professionals have a clearer understanding of what your dealing with. I am keeping track using a calendar and one of the many FREE apps that are available online.

   EXCELLENT advice!!!!!!!!

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Got an appointment with a doctor tomorrow. Last night was also bad.

My mom came over today to see how I was doing. She then told me that my grandma had "some sort of nerve issue behind her eye that was so bad doctors called them suicide headaches"

Awesome. Now I know that my direct grandmother had them, and from what I've read there's some supporting evidence of them being hereditary. I guess I'll know more tomorrow.

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  • 1 month later...

I have just joined the group (1 hour ago) and fit the classical definition of CH, sadly.  Last night was one for the worst bouts I have had. Always the same.  Awake at 1;00 am, feel a drill behind my left eye, a drill in my nasal area and a drill in my lower jaw.  It actually brings me to tears.  I am not sure anyone believes just how bad the pain is.

This is the first I have heard of a support group and I am grateful to have this here. I will read much.

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I have also noticed that the frequency (and the intensity)  is increasing.  They used to happen in my sleep and I would be up form about 1;00 am to 5:00 am and have the hangover the next day, but now they are continuing throughout the day.

Is this normal?

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Ive had those sexual headaches myself; long time ago and only twice. They were that bad I that remember them. Clusters are a different type of pain. It only took a small amount of reading online to realize I suffer from cluster headaches. If you dont know if what you have is a CH yet, give it some time and you will know for sure after a cycle or two. Dont trust a doctor to diagnose you unless he is experienced in CH diagnosis. Like Pete said, keep a journal. A journal is good to look at to monitor the duration of your cycle, headache severity, diet, sleep, abortive's and other factors. It is good reading to compare cycles.  For eposodic suffers (like me), you may have details in the journal that you may have forgotten over the past year or two that may help you with resolving the current cycle.

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