I have been to numerous ER visits and have seen two neros.  I have had some form of headache in varying degrees since May 31st. I was feeling froggy tonight and I decided maybe I just need to get healthy and start working out again. I ran like a quarter mile and it felt like my head was going to explode! I have gotten two good ct scans and im assuming they ran my blood for any types od infections. The second ER doc said he thinks its cluster headaches but I havent gotten a definitive answer yet. I have a physical at the VA next week and im just frustrated. I have been on the meds and off the meds. The clonzapam they prescribed me for anxiety makes me feel crazy so i took it yesterday but not today. I only take the sumatriptan whenever the headaches are really bad. Right now my face feels tingly and my right eye hurts, with a dull pressure on the side of my head.

I have also had confusion, anger, and fatigue from the meds. Ugh

Is sumatriptan addictive? I dont wanna take these things unless I get a really bad attack but man it did take away most of the pain last night. Someone please answer:)

Maybe these are just migraines? Cause cause I mean im not screaming in pain? But aren't migraines on the whole head? This thing is only on the right side. Staying positive

Hi Jamesss
I have taken sumatriptan injections for CH for 2 or 3 years now, and no, I don't believe they are addictive. Not for me anyway. There are pills (which take far too long to get into your system to be of much help), nasal spray (not tried it) and the auto injections which I swear have saved my life.  I NEVER leave home without them. On occasions I have taken 2 per day for several weeks, but no sign of addiction. It is possible to get rebound headaches from too much sumatriptan, but for me they are the kind that can be taken care of with over the counter headache meds (my favourite kind).

I should stress here that the most important thing you need to do is get a definate diagnosis, as there are many conditions that mimic CH, and they all respond to different meds. You need to see a headache specialist. Hopefully some one here will come along with info on how to find one. Tell us where you live - some one may know the right doctor in your area.  On the left of your screen there is a blue tab "cluster quiz". Take the quiz as it will help lead you to an answer, and maybe print it out so you can show your doctor.

In the mean time, sumatriptan is for CH and migraine, so if it takes away your pain I would go ahead with it. Also, search these boards for posts about a vitamin D3 regime which has gone wild here and proven to be successfull for over 80% of those who try it.

Hope this helps
Maz.

Hi Jamess and welcome,
If you look to your left on this page you will see a link
cluster quiz, take the quiz and maybe answer your  :question, am I a cluster head or not.

Good  Luck, Hoppy.

Maz, thank you for the reply. I was doing some research, and I noticed that if you do take sumatriptan for a migraine that you can end up getting rebound headaches. Maybe since I have been on and off the medications since may 31st, what im experiencing are those. I might just be constantly triggering my own headaches? Im not sure at this point, everyday I have a new theory about why I have this eye twitching on my right eye and the dull pain.

I live in Virginia, and I actually dont have insurance. But I'm a Veteran, so I can use the VA hospital, but it just takes a little longer to get appointments. My next appt is for an MRI, and thats in mid July. And then the follow up with the nero isnt untill September. Crossing my fingers that these migranes or whatever they are are gone by then. Im going to try and not take any medications, and see how that goes for the next few days. This site is very helpful, and even if I dont have CH, yall are a strong bunch.

Anyways, im off to bed and hope yall have a good night.

Eye twitching and the dull pain sound like your getting
shadows which is all part and parcels when your suffering
from CHs.

Cheers, Hoppy.

Eye twitching and the dull pain sounds like your getting
shadows which is all part and parcel when suffering
from CHs.

Cheers, Hoppy.

Hoppy, the quiz says I do have CH. But I mean, when I looked on YouTube I saw a girl who suffers from CH and mine aren't nearly as bad as that. I just have had this annoying pain on the right side of my head just about two inches up from my temple. Only the first three days are when I had to be in bed with a blanket over my head, wishing for it to stop. At this point, im just trired of researching, and this dull pain has been pressing on my right side non stop 24/7 for the past 16 days.

I need to stop taking the anxiety pills, and sumatriptan for about a week and see where this thing goes. We shall see. Thank you all for the help, sometimes it just helps to type and take my mind off this thing, ill call it the thing untill its classified ;D ;D

Shadows? Im confused.  Is that mean its dying down? 8-)

Okay, so I just read a thread on shadows on here. I guess I should be grateful that this is the moment between a cycle? Geez. Do y'all remember the first time you got your first CH?

All I know is that when I took that sumatriptan during the bad parts that it didn't do shit. Is profanity allowed here? ;D I just dont want to take the sumatriptan till shit hits the fan. I guess I should be on the phone with my nero seeing if i can get some oxygen for when shtf.

But anyways, if the Army taught me anything, its certainly false motivation. I need to be on this neurologists ass, and see if I can get some cluster headache awareness going on at the VA.

Shadows are what we call very mild attacks of CH. All the symptoms, but reduced pain. Sometimes they are a warning that a big one is coming, and often they are present between attacks throughout the whole cycle.

As to the severity of your pain compared to others, we are all different. And each attack can be different too. Although we do compare our symptoms it's really more just out of curiosity. The one symptom that is common to all of us though, is the pain. I guess we all cling on to the hope that we will find some one just like us, who has found the answer.

Something you could try - at the very first sign of an attack ( don't wait till it ramps up) chug down (really fast - big gulps) a red bull energy drink. It's the combination of caffiene and taurine in a sudden hit which does the trick, so any drink with those ingredients will do. Monster is another favourite. It doesn't work for every one but lots of people here find it eases the pain and sometimes can even stop an attack in it's tracks if you get it quick enough.

Another fool proof abortive is pure oxygen. But, this is important You need a minimum of 15 litre per minute - 25 is better, with a non-rebreather mask. Get either of those wrong and it won't work.

The sumatriptan injections only come in 6mg doses but many people find 3 mg is enough. If you google "cluster headache splitting injections" there is a clip of a guy showing how to split the injections into smaller doses which may reduce rebounds or other side effects. It helps with the cost too.

Getting an MRI is good as it will rule out anything more sinister, but the only way to get a diagnosis of your headache is by trial and elimination with the different drugs. As I said before , the different kinds of headache respond to different meds. What works for one condition will not work for another. Believe me, I know from experience. I was 5 years before I got a diagnosis and the correct meds. Five years of my life that I can't get back.

I can't speak for others but for me the rebound HA's don't last long. Usually a thumper in the morning but after a couple of strong doses of asprin or something similar ( I take three) it will go. If your pain is continuous and you can't shift it it's probably not a rebound.

If it is CH it may well be gone by the time you see your neuro, as most of us are episodic. Individual attacks typically last anything from 20 minutes to three hours (although we are all different here) with 2 - 6 attacks a day for several weeks. Then it will go away - till next time. Remissions can last anything from a few weeks to several years. A few lucky ones never get another attack. But they are VERY few.

Good luck with it all. And keep coming back here for support and friendship if you need it. We all have a connection here that can't be beaten, and it helps just to talk and know that there is someone out there who understands what you go through.

Let us know how you get along.
Maz.

Thank you again Maz, this is all very helpful :)

Im 27 years old, and I have never experienced anything like this before now. I try to explain my headache to others and they just dont seem to get it, so im glad I have somewhere to go for information. Im not really sure when im going to get an attack as Ive only had one im guessing if this is CH.

All I know is that I looked in the mirror, and one pupil was the size of a pin and the other was normal and I started panicking and drove to the ER. So I'll keep a redbull on hand if that happends again lol. I really do need to get further diagnosis as you said, just have to wait it out untill July 17th for the MRI. But I mean, I did get two good CT scans with the injectable dye and they said no tumors,masses,or aneurysms.

Bah. Anyways my dog keeps hogging the whole bed, and im gonna try and get some shut eye.Thank you again, im all new to this.

And im not sure if anyone can answer this question.  What are some things an MRI can pick up that a CT with the injectable dye didn't? 

My 2 cents - but bear in mind I'm not a doctor so my 2 cents isn't worth much. I'm an expert sufferer though. ;D
Your eye symptoms do sound like CH. Do you also get a puffy/droopy eyelid, runny/stuffy nose,tooth ache, tingles and prickling feeling across your cheek bone and upper lip, maybe mild numbness.Many people also get terrific ear ache and a painful neck. All this on the same side as the pain.
These are typical symptoms but not everyone gets them all. But some poor buggers get the lot. Some times I get some of them, and sometimes others. No 2 attacks are the same. But I've never had a constricted pupil - yet.

To answer a previous question, Yes I do remember my first CH. It was the day that changed my life !!!  I woke up in the middle of the night with pain that I didn't think possible, concentrated around my right eye and teeth. My top lip was numb and my eyelid drooped almost closed. I was 57 at the time, and I thought I had had a stroke. I have never felt so scared in my life. [smiley=bomb.gif]

Try to get the oxygen sorted out. I keep it by my bed and use it when ever I am at home, and save the sumatriptan for when I go out. I never leave the house with out them. Suma and 02 - my 2 new best friends.

What are some things an MRI can pick up that a CT with the injectable dye didn't? 

Can't answer that, but for me they were looking for tumours, bleeds - anything that doesn't look normal I suppose.

You probably already know your answer from the CT but have the MRI anyway. Better to be safe than sorry.
Maz.

I get the tingleness, ear hurts on right side, eye hurts on right side,  have had sharp random pains to the left side also, but those only last for about a second and feels like an icepick. And the eye twitchy thing.

I have the 25 mg sumatriptan pills. Are the shots better? That must have been scary at night, I was smoking a cigarette and thats when I noticed. Maybe I should quit, and that would lesson the severity of a next one if it does come.

Jamesss wrote on Jun 15^th, 2014 at 5:06am:

What are some things an MRI can pick up that a CT with the injectable dye didn't?

Yes, an MRI is able to resolve much finer detail than a CT scan, so it can identify issues like bleeds, tumours, etc. that are much smaller than can be seen with the CT scan.

Well that sucks that I gotta wait so long to get that MRI then. I really dont know how to persaude them to push up my appt. Everytime I call the neurologist now they are refering me to mental health at the VA. They told me that through the CT scan that it rules out anything major. The only thing I could really do is go into the VA ER and ask them to do a MRI based on what I think, because my town ER are the ones who said cluster headaches, while the VA neurologist said migraines.

Hi again,
The pills are next to useless as they take half an hour to get into your system and for many the attack is more or less over by then. There is a nasal spray, which is reported as being better, but I haven't tried it myself. The auto injectables however are a godsend. They will abort the worst ch (for many) in 5-7 minutes.

Some people report after effects and side effects that they just can't cope with, but personally I don't have any of these. Just blessed relief. They sting a bit and I end up with little bruises all over my legs, but compared to a CH that's a walk in the park.

The cost is prohibitive for many people in the USA (luckily here in England the NHS covers it) but the trick is to stock up with a few when you DON'T need them. It will spread the cost and you'll be well armed for when you do.
Maz.

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Anyways. Im gonna still try and get some sleep. I think I worry too much. Two CT scans would have ruled out any type of bleeding or tumors. Im probably over thinking it.

Jamess wrote, I have the 25 mg sumatriptan pills. Are the shots better?
Yes, as Maz said, but I haven't heard of 25mg Triptans
before, the norm are 50mg Imitrex pills or Imitrex auto
injectors, also ask your doctor about going on a preventative like Verapamil too keep the beast at bay.

Hoppy.

Well just as I started feeling good this thing is back. I was feeling normal today, and I guess something set it off. I took one of the 25mg usp sumatriptan pills around 6am. I dont have anything other than that right now. You cant overdose on these right? Cause im about to take another one lol. I can deal with the pain, just the confusion sucks.

You CAN overdose on them, but 25mg is a very low dose. I didn't know they were available in anything other than 50mg and 100mg. I take 50mg, but (I know you shouldn't) I have on rare occasions in desperation taken 2.

Some will argue against this, but as the pills take so long to start working, I sometimes take 50mg before bed and it helps to ward off the night time attacks so you can get some sleep.

Okay, well feeling a little better. I wont take one. So do y'all have months where you dont get these things? Or is it just like a constant thing im going to have to deal with on a daily basis?

Im assuming its different for everyone. But it seems to kick in around 6am- 7 being the worst and last till about 7am. And from 3-6 i could feel it comming on. Yesterday, i didnt feel it this bad jusg the dull headache on the right, and the whole day I was pretty much fine without taking any meds. I didng take any meds for the past two days till this am.

Im sort of trying to use this as a journal, so when I do go see my nero, that I can look back and see what I was feeling etc. You are right about it taking awhile to kick in, but I gotta space these pills out as I only have 5 left. Im calling the radiology dept. at 8 am so they can fit me in for any cancellations.  Anyways, real life awaits! Im going on a trip to Philly today ( not a good one). Ill be a passenger in the car so sleep is in my future.

Just wondering for future reference, mixing melatonin and thia sumatriptan is okay? I wont need it today as I havent slept tonight. My sleep schedule is so messed up right now.

Just talked to the neurologist on the phone, he said lets try the 50 mg of sumatriptan. And he said the ct scan ruled out anything major but still wants me to get the MRI. I guess this is all trial and error. And hes still saying migraines or cluster headaches and isnt definitive on what it is.

I also said about imitrix auto injectors and it sounds like i could get anything I want. This is how the VA system works? Is anyone else on here using the VA?

Some people are chronic, meaning they either don't get a remission or else thier remissions are very short. Most of us are episodic. We will be in cycle for , well, anything from a few days to a few months - as I've said before, we are all different.  Remissions can last anything from a few weeks to years. For me personally, episodes, or cycles will last usually about 6 - 8 weeks and remissions will last 8 - 12 months. But, during those remissions I can have random "one offs" that come from nowhere and go nowhere.

The trouble with CH is that it will change. Just when you think you have settled into a pattern and you know what to expect and when to expect it, the damn thing will morph. I've given up trying to second guess it, and now I take each day as it comes. I'm thankful for all my pain free time, but I keep a stock of meds so I can deal with it when it comes, and keep telling myself it will stop eventually. It always does.

If you can get the injections then go for it. They are definately the best. Save them for when you are away from home and get some 02 for home. Don't forget about the correct flow rate and the non-rebreather mask though.

If you have had one for like 18 days would it make you feel tired and exausted. Im going to go ahead and try and get further tests run at my primary care doc if I can get in. Today was rough, mostly feom lack of sleep. Finally got some sleep but I always seem to get on here around 12-6 and then lack of sleep makes it worse. But at this point i feel like rip van winkle, all I do is sleep, and if im not sleeping i have a headache. They actually called me back to get an MRI today because of a cancellation but I was already half way to Philly. Went to the ER this morning cause i was freaked out feeling super confused after this headache, they took a sinus xray, and that was ok. Just feel tired of feeling tired. Anyways,going to attempt to take something to make me sleep. Sincerly, rip van winkle. Lol

On a positive note, indomethicin seems to work. Ans im sticking to it for now and save the sunatriptan for when it gets worse. Ita okay to take them together?

Hi Jamess,
Indomethicin is normally given to rule out other headaches
that mimic CHs, so if you are getting relief then it's possible
your not suffering from CHs because Indomethicin is mostly
ineffective when treating CHs,also be careful when taking
this as it can play havoc with your stomach.

Hoppy.

Indomethicin won't touch CH, but it is the most effective medicine for another headache type, called paroxysmal hemicrania. It was one of the drugs I tried for a few months while trying to find the correct diagnosis- process of elimination. If it's working well for you then you probably have PH instead. Do get something from your doctor to protect your stomach though, as this stuff will rot your stomach lining.

I asked the ER nurse about this, and she said that usually only happens in severe cases. But ill take yalls word for it and ask my primary care doc next week.

I'm thinking along the same lines as maz and Hoppy on the Indomethicin. Ask your doctor about paroxysmal hemicranias headaches.
You ask "If you have had one for like 18 days"......do you mean one headache that lasts for 18 days or do you mean one headache each day for 18 days? A cluster headache can go for a couple hours but won't last 18 days.
Also you say "all I do is sleep, and if im not sleeping i have a headache." Most of us, but not all, get our attacks while in the REM sleep mode. But, that is certainly not saying they don't happen while awake because they do, very often.

I mean on headache that has lasted in some shape or form for 18 days straight. Sometimes its severe and when it is , I get confused. So I guess this isnt cluster headaches from what y'all are exlaining. Maybe I have to find a forum on paraxoimal hemocranias now lol

But i think yall are right. I have been taking the indo since yesterday and I got major relief from any headaches. So lets give it a couple more days of the indo,and no other meds and see how this works.

I really hope you have found what you need. It's good to get relief isn't it?   :D    Don't forget to get something to protect your stomach. You don't want to swap headaches for serious ulcers.
Good luck, and let us know how you get along.
Maz.

Im wondering if supository indomethcin would still hurt the gastro? I wonder if paradoxical hemocrania stops? I know there is also hemocrania continua, does anyone know if there are meds for this that dont eat your stomach up? Im going to call my nero tomorrow with this news and see what he says. The only thing that sucks with indomethcin is that I already have GERD. Seems ive been dealt a shitty hand lol

So far my headaches have been gone for the past four days. I only am experiencing a weird feeling, like im not myself. I have a pretty big pimple on the exact location where the intense pain was, so maybe that is linked to this. The eyelid twitching has stopped, but Ill occasionally get a sharp pain to the right side, but it subsides. I have stopped all medications such as indomethicin, and I feel like I have a headache pharmacy going on in my medicine cabinet. I refuse to take anything unless this headache comes back full force.

I told the Nurse Practitioner at the VA outpatient clinic about my migranes or whatever they are. And she told me that, thats how migranes are supposed to be. Im pretty sure just regular migranes only last for about 72 hours, then subside. I mean, im happy that im pain free right now, but I feel as though I have anxiety now, and am in constant fear of stuff.  I was never like this before. Im also feeling pretty paranoid lately. I need to get a grip for real!!!

Other things I have noticed today although the headache is gone,  my right ear hurts. And it feels like the right side of my head ( where the headache was) is healing from a bruise type of feeling.

Ive pretty much given up on telling people ny symptoms now, because people are starting to think im nuts!! And I'm starting to believe them because, this all has been quite weird.

Life ia short though, I can't just sit around and complain all the time.


Just now, it feels like I have head pressure and when I swallowed my ears are making like a popping noise, as if you are in an airplane.


Whatever im so over this thing. Vent over lol

Alllllll blood results are normal. So I guess I just have headaches.