Second topic posting.  I'm beat, I can't get any relief of a headache, my head hurts to the touch.  It hurts to type this out and my head is hammering at me, I'm a battering ram or ice pick - I was at the ER twice last week with little relief but I feel like I need to go again.  My tablets of Sumatriptan are not working and I don't have an appointment with my family doc until the 12, my narcotics are a hit and miss - yesterday they didn't work so I have not been taking them today but that means then I have NOTHING to take.  A shower only works as long as I am in there, I can only drink so much coffee, as well as bang my head against the wall for so long too without breaking the wall down.  What do I do?  I'm so absolutely tired! :-/

G'day, from down under.
check out the message i just posted to.

Re: God Help Me.   :(

Hoping this will help you.

Hoppy.

You do state you have an upcoming appointment with your doc, and that you've been given suma pills. Please note the pills are nearly universally useless for CHs, as you are discovering. So, in advance of the appointment, call and complain loudly, and ask for injectable suma (imitrex) and while you're at it, push for an O2 Rx. You should at least get a nonrefillable Rx for the shots. They can be very effective in aborting a hit. Good luck and God bless. lance

Please! Don't start another chain. It makes it so difficult to follow you when a new chain, on the same issues, pops up.
===
What is happening re. finding a headache specialist? It appears that your present doc doesn't have the skills needed

Sorry Bob, just thought I would get better luck under the correct category that was specific for CH. 

So a update; last night right before bed I was BAD, I took 3 percocets and now I am paying for it.  I am not with it, I am very groggy, irritable and still with a headache.  I will make a call to the doctor and if I can't get in I will have to make the call on what to do - if I go to the ER or not.  This has been going on a week and half already with no relief what so ever on my headache, migraine and cluster.

Have my massage that I am nervous about.  Last monday evening I had a major 30+ episode after my massage so we will see what happens after todays...

Curious...if I am having both a migraine and cluster why would the suma tablets not work?  Oh what frustration!

And, again apologies. :-[

Yeah, maybe lady luck does shine on me today?  I am going to see my doctor in a hour, the blessed hour.  Then off to the massage - maybe I will be able to sleep/nap today blessed wonders of all; we'll see if any miracles come of this appointment first.
I'm armed with a headache specialist name and clinic. 8-)

Just don't make miracles the main weapon in your arsenal. You'll suffer. A lot. Guaranteed.

Working with both migaine and cluter poses some really complex issues around treatment. Your doctor just doesn't "taste" up to the task.

This may be a repeat but, find a headache specialist--not a general neurologist or pain clinic type. Track record for the last two types is grim.
==
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
====
Pain meds for Cluster is a no-winner, often increases attacks and doesn't control the pain

lizardqueen420 wrote on Jun 3^rd, 2013 at 10:38am:

last night right before bed I was BAD, I took 3 percocets and now I am paying for it.  I am not with it, I am very groggy, irritable and still with a headache.

You'll almost certainly be getting rebound CHs / migraines with the daily use of pain killers, showing how they are not an effective option for aborting headaches.

Really do push for oxygen as you can use it as often as you need.

Well, I'm back from the doctor and the massage.

A little relief from a intramuscular Toradol shot?  Anyone heard of that?  The tablets and IV didn't work for me but this is working a little bit for me we'll see for how long. 

As for Imitrex injections my doctors office only carries the spray and tablets - she wants to try the Toradol first and the Zomiptriptan tablets also won't give me a Rx for O2 - frustrated!  All because ER doctor says its migraines and I told her he didn't even address the Cluster Headache symptoms!  I kept my appointment for the 12th and I  have to go back for more Toradol injections in the meantime, I'm beyond caring anymore - I know why they are called Suicide Headaches now!

Toradol just treats pain. It is an NSAID. It won't do much to prevent future attacks once it wears off.

Except for the other dose I have.  Wonderful, treated for pain but nothing long-term.  I'm thinking that I might have to go to ER to get the proper script for Imitrex or maybe change doctors.  So confused...Everyone here keeps saying Headache Specialist/Neurologist but I am from Canada and that only happens so fast especially when there is only 1 in all of BC and who knows how long that waiting list is >:(.  So I'll just keep plugging along and pestering ::)my doctor until she gets sick of me ;) and can't help prescribe me something to finally keep me away for good  ;D.  We'll see if my plan works. :-X  What's up with the Welders Oxygen?  Is that under our read up?

You were right, the pain/headache is back.  Took my first Zolmiptriptan a 1/2 hr ago as everyone says so far the tablets are not working for me AT ALL (Sumas or Zomig don't work either) just wish my doctor would dummy up and give me something that would cause me to be PAIN FREE. 

Sugar-free Red Bull has Aspartame in it and that is known to cause a headache why would CHers take this?  Is the abort worth the risk?  Just trying to get a feel as Aspartame is REALLY bad for you but so is CH! :'(

I'm wondering if anyone has recommended the following thread to you:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Yes, thank you and on day 3 of the regiment now.  Told my GP today at appointment and she is on board so I will get her to test levels in a month.  So far no difference, found a big difference when I upped levels to 5,000 over 4 years ago for my Celiac disease but it did take time.

lizardqueen420 wrote on Jun 3^rd, 2013 at 6:43pm:

Sugar-free Red Bull has Aspartame in it and that is known to cause a headache why would CHers take this?  Is the abort worth the risk?  Just trying to get a feel as Aspartame is REALLY bad for you but so is CH! :'(

Hi lq,

Not all sugar free energy drinks use aspartame...many use sucralose...and 5 hour energy shots (2 oz bottles) has neither. Ya just gotta read the labels (aspartame is definitely a trigger for me)......

Best

Jon

Quote:

...found a big difference when I upped levels to 5,000 over 4 years ago for my Celiac disease but it did take time.

It took me two months before I settled comfortably in the sweet spot (60-110 ng/mL). Here's how it went:

2 weeks at 20,000iu/day

2 weeks at 20,000iu/day WITH a 50,000iu loading dose once a week.

2 weeks at 15,000iu/day

2 weeks at 10,000iu/day

Been at 10,000iu/day and pain free for over a year.

You might want to consider increasing the dosage dramatically for the first couple of weeks.

I found a list of 48 Neurologists In B.C. at this link.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE;

Wow, thanks Mac.  There were extra ones, only problem they are not headache specialists but I might have to try them first before going to Vancouver as transportation isn't the easiest for me, funds and babysitters for daughter and funds for that too.

OK, tried my first Red Bull, made my headache a shadow for awhile but it tasted like carbonated cough syrup.  I hated it!  I'm going to try a 5 hour energy next time.

You guys are all are so helpful.  Brew with the D3 regiment you have found that works, what do you mean by 50,000 loading dose? 

Thinking I may need to change doctors but a Neurologist/headache specialist can change that I think.  I remember when I had to suffer before getting diagnosed with Celiac disease, sometimes it takes the medical field awhile to admit to technologies that will work.  So I will probably get the proper treatment eventually but it will take me time to get there unfortunately that is Canada's failing health care system for you.

Cheers :D

I also have both migraine and cluster.

I had never tried sumatriptan before I started getting clusters, just Maxalt (rizatriptan) for my migraines which worked, and continues to work, wonders. Now that I have clusters, I also use the sumatriptan injections, which, consequently, works wonders for the clusters.

On that note, the suma does nothing for my migraines, and the Maxalt does nothing for my clusters (even if it is a long-lasting cluster). I'm not suggesting that sumatriptan doesn't work for others' migraines. I am suggesting that, for a cluster, I would not trust anything that requires swallowing to abort the attack. But that is just my opinion. Sometimes you have to take what you can get, unfortunately.

Quote:

...what do you mean by 50,000 loading dose?

Exactly what it says. Once a week I would take 50,000iu instead of the daily 20,000iu for that day.

Quote:

What's up with the Welders Oxygen?

We have several posts on welder's O2. Do a search and take notes. You can set yourself up and bypass a stubborn doctor. Just note you will need to purchase your own regulator and mask. God bless. lance

Looked into the Welders O2 Thanks again.

My right eye is red and watery today as well my nostril.  Is it common to have LOTS of cluster attacks?  I even had one IN the shower.  I have ANOTHER doctors appointment tomorrow for the Toradol and a referral, this is ridiculous.  I can't live like this anymore.  Also very dizzy and nauseous today.

My husband will be the guy that looks into the Welders O2 for me, I'm not the woman for that.  (I can barely type this my hands are shaking so badly and my head and eyes hurt).

If you got a cluster in the shower, was the water fairly warm/hot? Heat = vasodilation. Showers usually trigger one for me.

I just wanted to know if you have beed tested for sleep apnea? And also how many others have beed tested/diagnosed with sleep apnea? I think I know whats causing our clusters. It seems that most ppl have them during the night or a really bad one in the morning. From experience I know that when I had a really bad one NOTHING helped to stop the pain. But there are preventative measures that you can take an DON'T give up on them too early. Batch has a thread on taking vitiman D3 and omega 3 fish oil, this sould help the inflammation.

I believe the headaches are caused by the lack of oxygen in the bloodstream, while your asleep the muscles still burn ATP but at 1/3 the rate, what happins is the lack of oxygen starves your muscles and tendons and ligaments which dosen't allow the muscles to burn the ATP but instead burn glycogen which causes lactic acid build up in your body. Which in turn causes inflammation. This is why oxygen therapy works for most CH sufferers. 1. Because short trem oxygen helps the body to produce endorphins and 2. long term will help increase blood o2 levels which should decrease inflammation form lactic acid build up. So if you don't have oxygen do deep breathing exercises before you sleep and when you wake, also a humidifier will help your lungs to absorb o2 faster and more effeciently especially if you live in a dry climate. Careful of any foods that cause inflammation and stay off sodas and caffeine. Caffeine will help short term because it helps you to produce endophins but long term it will dehydrate you and make your body use more oxygen. And when you get some relief do some biofeedback and sensory deprivation and see if your body will tell you where your pain is coming from, you dont want to do it while your in pain though cause its hard to focus. I hope you find relief soon and i hope this helped.

Also does anyone else have fatigue and joint aches along with the headaches?

G'day Kevin,
I'm not sure about that one, i would like to find some research
on it first. The most widely accepted theory is CH's are due
to abnormality in the Hyophalamus, which regulates our
biological clock. This can explain why CH's frequently strike
around the same time each day an during a paticular  season.

Hoppy.

And thats understandable. Brain functions are also linked to oxygen levels. And low testosterone is also from lack of oxygen. When the brain does not recieve enough oxygen it does an interesting thing and shuts down all unessential functions and reduces blood flow to extremeties which interestingly enough can cause RLS(Restless Leg), low T, body aches, lethargy, ect. All of which are symptoms most CH sufferers have. It may be that we're either not getting enough oxygen or some chemical in our body is not allowing us to metabolize the oxygen as readily. Also the reason it could be seasonal is due to atmospheric conditions, humidity, sea level, pollen or allergens anything that could cause us to get less oxygen, that just what I think, but it does make sense. I live in Louisiana and i found that when I would visit my brother in Utah my clusters would get way more severe. Due to the lower humidity I think.

Another question i would like to ask is do you find yourself breathing shallowly on a normal basis? Or do you breath as deep as you should?

Why, then, is my resting pulse/ox level 98% or better every time I've ever had it measured?

I myself, find that I breathe shallow.  I have to remind myself to take deep breathes and it feels great but I don't do that enough.  As for sleep apnea, I've not been tested but I don't believe that I have it either, my brother does as he is VERY over-weight.  These headaches have recently just started for me, the first week of May and the have progressively been getting worse for me as to the point where I never don't have one anymore.  My husband has been the Migraine sufferer up until now and he is so worried for me.  I would go back to the ER but I don't want their first line response, morphine; so I'll see my doctor tomorrow and see what she will do for me and decide from there if I should go to the ER or not.  My right eyeball is now swollen, right eye socket is sore to the touch (very sore)  and random spots all over the right side of the skull are also sore to the touch.  A CT scan has been done and normal results.  Blood work was normal.  I go to bed with this and wake up with this, I'm exhausted and had a 3 - 4 hour nap today and I'm still tired - sleep is leaving me exhausted.  Day 4 of the Vitd3 regiment.

Like i said your body may be producing some chemical or hormone that is causing you not to absorb the o2 you are getting. 98% is great but if your body is not using it what good is it. Ill look up some info and see if i can figure out what could stop the cells from absorbing o2. I'll let you know as soon as I can. But please try the D3 and Omega 3 and see if it helps, it may take some time for results and you may have to take a high dosage as stated in the other article.

Also have you had your bodys PH checked? High acidity can cause cells to stop absorbing certain nutrients. If its high in acid drink water with baking soda in it a few times a day or get a water machine that makes alkaline water

I'm 130 lbs, do not have sleep apnea, and my testosterone level at my last check up was around 775 ng/dl (I'm 24 and the average for my age group is around 692). I almost never get hits after I've fallen asleep...although I do average 2-6 per day (varying at different times during my cycle).

Should I ask my neurologist for some 'roids and a CPAP machine to use during the day?

I do, on the other hand, have delayed sleep-phase syndrome. My body temperature also has trouble regulating...my average body temperature seems to be around 96.5-96.9. These are functions of the hypothalamus. I'm going with the more accepted, scientifically based theories that clusters are caused by abnormalities in the hypothalamus until more research proves otherwise.

The  Hyophalamus act's as a type of thermostat for the body
temperature. So when you visit your brother in Utah, your
Hyophalamus is not adjusting properly, hence more severe CH.

[smiley=headbanger.gif]

Each person is different what works for one may or may not work for another. I'm just trying to help and gather info. If you are going to look down on what I ask and have presented and I might add not even actually READ what I wrote then please do not respond. Thanks.

That being said I'll say it one more time low O2 levels OR if your brain/body is not absorbing O2 correctly WILL cause problems in all areas of brain function INCLUDING the hypothalamus. Your basically saying NO when you havent even thought about it. The brain takes 20% of the total intake of O2 to function properly. If you cut off O2 for only 8 minutes you will lose ALL brain function. Imagine if it was only absorbing 10%. What do you think it would do? Like I said before, the brain itself will shutdown anything it deems necisary under those conditions, including the hypothalamus. These are known facts so ask your doctor if you don't believe me. I've had these for 20 years and a change in temp has never been a trigger for me.

Pierce. How long have you suffered from these? And what age did they start?

Also lizardqueen. Tell me every symptom, body temp, any tests and what results. Does anything relieve the pain at all?When did they start? Did you get in a car accedent recently?  Do you have a knot on the back of your neck near the base of the skull? Sometimes you have to feel deep to find it. Anything more will help.

Just wanted to add one more thing, yes studies have shown activity in the hypothalamus DURING a headache ONLY. NO proof has been given that it is the cause. Tell me what regulation of body temp has anything to do with pain when the hypothalamus is not a pain receptor if anything it would be the thallamus that is causing the problem due to the fact that the HT(hypothalamus) is controlled by the thalamus and the thalamus is the pain receptor in the brain.
Plus, what happines when your in pain? You tense up. When you tense up you create body heat/endorphine levels spike, endorphine comes from the petuatary to the HT, in turn activating the HT. This is the reason for hypothalamus activity during an attack.  [smiley=deadhorse3.gif] [smiley=deadhorse3.gif]  The brain and nervious system is the least understood.

Due to the abnormality in the Hypothalamus when having
a CH episode, dialates blood vessels which creates pressure
on the trigeminal nerve.  [smiley=headbanger.gif]

Two things. First, recent studies (results published here) on the effects of imitrex concluded the effectiveness was due to neuronal, not vascular, activity. Second, if O2 levels were the issue, it seems I would only get hit at night. Not the case. I am chronic, and when in high cycle, I will be hit regularly every two hours, waking or sleeping. There has been talk about sleep apnea and while there may be a connection, none has been demonstrated. blessings. lance

Wimsey1. Your case is different to mine I fully believe mine is caused by a pinched nerve. I would have episodes at almost exactly the same time each day as well. This was due to what i call endophin burn out. Similar to manic depression, Either the receptors in the brain for endorphin get over saturated and stop working or the petuitary gland stops being able to secrete as much endorphin. Either way what happins is this leaves your brain wide open to feel pain as it has never before. And this would make sence why opiates don't work for us because the recepters are burnt out. Back to the nerve, nerve problems can be present without the feeling of pain. What I mean is that in my case the nerve being aggravated is causing me to produce massive amouts of endorphins all the time so I don't feel the pain, when burnout occurs it causes everything to hurt, heat,cold, touch and I believe this is the reason why its different for each individual.

Anyway I'm here to help lizardqueen right now. If hers are like mine I might be able to help her without the aid of medication.

OK, so my headaches are increasingly becoming worse.  I cannot relieve them at all with anything, I am going to my fam doctor today where she is going to give me an intramuscular Toradol shot that I got 2 days ago as well and helped for a couple of hours, I'm not expecting any relief today.  In fact I am going to the ER after this appointment, hopefully with the help of her so that I can bypass the waiting, not sure if that is possible though.  Have to see. 

Haven't had too many tests as this is all new.  Neurologist at hospital ER last Thurs order CT scan and was normal, as well blood test.  During headaches my body overheats and I strip down to nothing on, I don't want any clothes on and as soon as they are done I am putting layers on and blankets as I cannot control my body temperature anymore.  I know it is due to my hypothalmasus is out of whack, don't know why.  As well, don't know why headaches are getting progressively worse.  Probably due to the incompetency of my doctoring skills and lack of them, my husband wants me to find a new doctor I just want a headache specialist or a doctor that understands them as she doesn't.

I've been constipated due to the narcotics that the hospital keeps giving me so I got some suppositories yesterday and got my system cleaned out for todays trip.  Like I've said my skull is sore to the touch and today I don't even have to touch it, it's just sore - it hurts to have my eyes open.  I'm tired ALL the time, I'm tired after a nights sleep (if not woken up) and after a nap I woke up 4 times last night and had such a hard time falling asleep each time. 

Kevin you say you want to help me but you have not been reading my posts carefully enough.  You would see that I have been healing from a major bunion repair surgery since March that had me elevating my foot for a long time that had siezed muscles up in back and neck which since then have been getting headaches.  THey started by coming and going very mild, then progressively built up to Cluster Headaches and constant Migraines that I get no relief from.  I am doing massage therapy but only have so many available with my insurance, and that is almost done already $300 a year is not much.

My doctor won't prescribe injections and the Triptan tablets are not giving me relief.  I take Topamax daily and have yet no relief with those, opiates have no effect on me either, I am also dizzy and nauseous with this constant headache.  My head is starting to hurt, my eyeballs hurt and are swollen, my blood vessels in my head won't stop playing their drum - I just want some relief.  Anyone?

I have another post, check it out and let me know if it helps or not. Also did you feel the back of your neck near the base of the skull or a little further down for any hardspots, lumps or sensitive spots? Is it on the same side as the pain?This is imortant, because if you do I might be able to help you.

Also sorry about not reading your other posts I read them after I posted the reply.

I would get constant headaches along with my clusters during some cycles, others get migranes along with clusters, but misdiagnosis is a concern as clusters a hard to define.

If your doc won't prescribe O2, get a new doc.

If you won't get a new doc, get O2 yourself.

You also state that you have a constant headache.

By all indications, that is not CH. You may have a bad diagnosis on your hands.

The thing is Brew, I was getting Clusters and now it's just a constant painful headache.  How am I supposed to think?  IDK what's going on and I'm confused like the rest of them!  I get periods of clusters in the headaches too.

If your doctor isn't prescribing triptan, go to another doctor. 

My CH cycle started in mid May. The doc prescribed me sumatriptan nasal spay. I wasted money on it as it didn't do a thing.  I asked for injections of the same drug and it worked like a charm!!!

Also, if this is going to be an episodic CH cycle for you, it will be over one day.  I totally understand your pain, both physical and emotional.  I lived like a zombie from CH to aftershock effects to another CH. Some days I'd have constant headache, not like a CH attack, but very much impacting my everyday activities. It is very depressing, but it will be over for an episodic CHer. I'm on day 3 of being CH free and this makes me feel again like a real person, not a crazy one. There will be a relieve, it can be found. 

I really hope this will be the case for you too.

Also, from what I'm reading it looks like you'd be recommended an MRI to rule out any other causes. If insurance covers it, I would even insist on getting MRI for the piece of mind.

Well, the doctor is sending me off to a Neuro he is schooled in headaches but not a headache specialist.  My doctor prescribed me some maxalt tablets, surprise surprise, they did nothing but shock me at the cost of them even with insurance they were still expensive.  So off I went to the ER, 2 hours later all they did was give me a shot of dilaudid because of the referral to the Neuro - oh the frustration. 

A question to all.  With the maxalts being so expensive, is the injections also very costly?  Are there any places that you can print coupons to save money on any of these things?  Any trials to take part in that saves you the cost?  I'm just a poor headacher, maybe I'll have to make a living on the street to support my new lifestyle of headaches LOL. :-*

lizardqueen420 wrote on Jun 5^th, 2013 at 11:24am:

OK, so my headaches are increasingly becoming worse.  I cannot relieve them at all with anything, I am going to my fam doctor today where she is going to give me an intramuscular Toradol shot that I got 2 days ago as well and helped for a couple of hours, I'm not expecting any relief today.  In fact I am going to the ER after this appointment, hopefully with the help of her so that I can bypass the waiting, not sure if that is possible though.  Have to see.  Haven't had too many tests as this is all new.  Neurologist at hospital ER last Thurs order CT scan and was normal, as well blood test.  During headaches my body overheats and I strip down to nothing on, I don't want any clothes on and as soon as they are done I am putting layers on and blankets as I cannot control my body temperature anymore.  I know it is due to my hypothalmasus is out of whack, don't know why.  As well, don't know why headaches are getting progressively worse.  Probably due to the incompetency of my doctoring skills and lack of them, my husband wants me to find a new doctor I just want a headache specialist or a doctor that understands them as she doesn't. I've been constipated due to the narcotics that the hospital keeps giving me so I got some suppositories yesterday and got my system cleaned out for todays trip.  Like I've said my skull is sore to the touch and today I don't even have to touch it, it's just sore - it hurts to have my eyes open.  I'm tired ALL the time, I'm tired after a nights sleep (if not woken up) and after a nap I woke up 4 times last night and had such a hard time falling asleep each time.  Kevin you say you want to help me but you have not been reading my posts carefully enough.  You would see that I have been healing from a major bunion repair surgery since March that had me elevating my foot for a long time that had siezed muscles up in back and neck which since then have been getting headaches.  THey started by coming and going very mild, then progressively built up to Cluster Headaches and constant Migraines that I get no relief from.  I am doing massage therapy but only have so many available with my insurance, and that is almost done already $300 a year is not much. My doctor won't prescribe injections and the Triptan tablets are not giving me relief.  I take Topamax daily and have yet no relief with those, opiates have no effect on me either, I am also dizzy and nauseous with this constant headache.  My head is starting to hurt, my eyeballs hurt and are swollen, my blood vessels in my head won't stop playing their drum - I just want some relief.  Anyone?

A headache doesn't turn into clusters.

               Potter

Sorry, Potter that is where you are very wrong.  Mine did.   I don't want to argue with anyone and dispute anyone, I know how my headaches started, what they progressed to and what they are now.  We all know headaches suck, so please don't disregard someone's post as that is very frustrating and demeaning it's also very difficult for women as it is.  So I'll say no more as today and everyday has been an extremely bad day and this is making it worse!   Comments like that....

T'was just a statement.  Cluster headaches is a malfunction of the Hypothalamus.

           Potter

Technically Potter is correct. People can and do suffer from multiple headache types. You may be one of those "lucky" ones. Which is why it's so important to work with a headache specialist.

Yeah and my hypo is very f**ked right now, I'm either really hot or really cold and all the other stuff that goes with the hypo.  So, yeah I'm getting my hypo checked.  Remember, this is probably to do with my surgery and having to lay down all the time elevating my foot, I have knots in my neck and back I'm sure this is causing my headaches but again, I'm not the doctor.  IF you can't tell I'm very frustrated with the whole medical system, lack of doctor experience, lack of my body taking to meds, and lack of understanding from family and you fellow headachers.  Its unfortunate.  You come to the one place where you hope someone understands and of course no one does, all they do is preach at you to get a headache specialist, and medications and oxygen - YOU DON"T THINK IM NOT FU(**IN TRYING?  This forum is BS. 

THanks for the information and the tips.

Dr. Gordon Robinson
Works out of UBC, office on Laurel Street in Vancouver.

Headache specialist, there is probably no one better in BC.  He knows CH and he truly understands.  (he spoke at the OUCH conference in Vancouver.  2003?)

He has a terribly long wait list though. 
So get the referral and then call the office yourself, explain you have CH and maybe more.   Mention this web site and maybe you can get move up the list.

Good luck.  :-)

lizardqueen420 wrote on Jun 5^th, 2013 at 8:39pm:

Yeah and my hypo is very f**ked right now, I'm either really hot or really cold and all the other stuff that goes with the hypo.  So, yeah I'm getting my hypo checked.  Remember, this is probably to do with my surgery and having to lay down all the time elevating my foot, I have knots in my neck and back I'm sure this is causing my headaches but again, I'm not the doctor.  IF you can't tell I'm very frustrated with the whole medical system, lack of doctor experience, lack of my body taking to meds, and lack of understanding from family and you fellow headachers.  Its unfortunate.  You come to the one place where you hope someone understands and of course no one does, all they do is preach at you to get a headache specialist, and medications and oxygen - YOU DON"T THINK IM NOT FU(**IN TRYING?  This forum is BS.  THanks for the information and the tips.

If I kissed yer butt would you be happy?

           Potter

Hi Liz,
Yes i know how frustrating it can be, having suffered the beast
myself Spring & Fall for the past 43yrs, and on many a time
nearly gave up the fight. As you can imagine over those years
i saw my fair share of neuro's to no avail, because their is no
cure for CH's, only management. I'm not sure why Potter said
what he said, because shadows are the warning sign there's
worst to come. This is my first Fall i've got through in 43yrs
without a shadow in sight. I'm on the vitamin D3 regime
[smiley=bow.gif]

lizardqueen420 wrote on Jun 5^th, 2013 at 8:39pm:

Its unfortunate.  You come to the one place where you hope someone understands and of course no one does, all they do is preach at you to get a headache specialist, and medications and oxygen - YOU DON"T THINK IM NOT FU(**IN TRYING?  This forum is BS.

Hiya lq,

I'm gonna attribute THAT BS to the frustration that we ALL have experienced.....my thoughts.... FWIW....

I'm chronic....7 yrs now...plus 24 episodic...whatever....

what I know about ch was learned HERE or at the National Headache foundation...

with RARE exception...I...WE..know more about ch than 99.99% of the medical profession..."no one understands" is the overstatement of the millenium...please!...that's an insult to about 10,000 of us...definitely NOT appreciated....

I have personally known a person with ALL the classic symptoms of CH...based on the caution I learned here...that was not enough. I advised a full medical eval....he did. Turned out he had  brain tumor...he's still alive...if just treated for ch...he would NOT be....

"all they preach" is headache specialist, O2, and meds! Are you freaking kidding me?... the proper response would be.... "THANK YOU!"

been HERE since 2001-2...if not...you wouldn't be reading this...ch.com saved my life...and countless others....

..there is an OLD saying here..."take what you need and leave the rest"....amongst the WISEST advice I have ever received...please take note...and please don't take offense....my advice....3....DEEP .....breaths...and come on back...

Best

jon

Quote:

IF you can't tell I'm very frustrated with the whole medical system, lack of doctor experience, lack of my body taking to meds, and lack of understanding from family and you fellow headachers.  Its unfortunate.  You come to the one place where you hope someone understands and of course no one does, all they do is preach at you to get a headache specialist, and medications and oxygen - YOU DON"T THINK IM NOT FU(**IN TRYING?  This forum is BS.

We all attempt to give advice - and we possibly put our own twist on it - but it's solid. What we won't give is permission to shoot the messenger.

Take it or leave it. Ball's in your court. And don't you DARE think for one minute that nobody here has ever not been EXACTLY where you are right now.

Brew
14 years episodic
7 years chronic
1+ year pain-free thanks to clusterbusters and the vitamin D3 regimen

Lizardqueen, Sean here, some of the people here are in the middle of an episode right now rolling on the couch, moaning and crushing there head with their hands. They can't think, look at a screen let alone type or form a thought in their head except to wish they weren't in agony. Some are totally PF but all know the excruciating pain of a cluster and all of wish you weren't suffering. Whenever I make a mistake and knew better I refer to a quote I learned as a kid, " knowledge not acted upon is useless". You have been given a whole lotta good advice but other than our empathy that's the best we can do' The rest is up to you. My wife has suffered from migraines  from the age of 7, that's 55 years of pain and until they came out with Imitrex the best she do was dope her self up, lie down in a quiet dark bedroom, not move for fear of puking and try to sleep the pain away-- for days at a time. Textbook migraine.  I'm textbook cluster-- sudden onset and just as sudden ending, nightime and clockwork regularity, can't sit still when in the middle of a ch, no way can I lie down, insane pain that responds to ox, actually have considered the alternative and on and on. Maybe you have both or maybe you have neither.
     We don't know what you have but you gotta find out, that's what everyone is saying her. 
   You have our deepest sympathy but unfortunately that won't make the pain go away.

  Good luck, Sean

Sean, that was beautifully said. Thank you! We are all just trying to help but we do get frustrated when all we can do is repeat the same advice over and over again, hoping it will help ease the pain. And for the most part, it really does work. We are skeptical of "new" ideas, or "newbies who know" but are just spouting nonsense. We never tire of working with someone who wants to tame be Beast cuz that's why we are here, too. Blessings. lance

If your talking about me with that comment your extremly wrong. I have done my homework just as most of you have. And if you'll notce my good friend I am the only one who asked her about the knots in her neck. Which she HAS! Why would I ask about that if I diddn't know something? The reason going to a massage therapist dosen't work is because they are trained NOT to massage deep around the spine so as to avoid any liability, I know this because my ex-wife and sister-in-law are both massage therapists. And I also know for a fact that the knots cause clusters, because they cause mine, they may not cause yours, but I can testify to the treatment I did and maybe HELP someone on here if all of you weren't so negative. This was the whole reason I never joined this site years ago thick headed one-wayed idiots that think that there way is the only way and won't give anything new a try.

In meds we trust! Go take some vioxx, Acomplia, Raptiva, Darvocet/Darvon, Avandia, Xigris or Trasylol while your at it. Trust in the drugs my friend you'll be better off. Riiiight.. Keep trying to cure the symptoms and you'll never find the Beast...

P.S. Please don't actually take any of those meds, they have been recalled by the FDA cause they killed a lot of people. You know who made those drugs, the same scientests that did the CH study. They don't want a cure they just want to stay on your payroll.

Quote:

This was the whole reason I never joined this site years ago thick headed one-wayed idiots that think that there way is the only way and won't give anything new a try.

I hereby nominate this statement to be included in the revised and updated edition of Dale Carnegie's How to Win Friends and Influence People.

I'm included in that comment to because I used to think that way to. I never thought my clusters could be caused by something so simple. And wouldn't listen to any advice.

Brew check your messages.

Kevin, why is it that when you call me "dear friend" I don't believe you mean it? It's probably the tone of your address that is off-putting. It lacks a basic humility. We have certainly had advocates for massage therapy, and not a few massage therapists, post before and my/our response has been: well, that has not worked for me, but if it works for you, great!

One wayed? Take meds only? Let's see, we advocate for water therapy, hot or cold showers, a/c and rapid breathing, D3+, O2, energy drinks, melatonin, exercise, etc. Lot's of non-med approaches. But, when you are getting hit 4-6 times a day/night, as am I, the good news is there are meds that might work: verapamil, lithium and occasionally topomax. We strongly advise against taking opioids or other narcotic pain killers. Your rant notwithstanding.

I think you would find with a little less self-defensiveness, this is a wonderfully accepting community, each of us only trying to ease the pain. I think you bring quite a bit to the table, Kevin. But I would like to see you turn the flames down a bit. blessings. lance

Yea, the tone of my adress was the way I intended, as yours when you said "newbies who know nothing".  Sorry I get a little hot when someone says im an idiot. I'm sure you would to. Sorry for the comments, I will calm down and believe me there is a medthod to my madness, I think I may be on to something with these CH's, just need more info from you guys and maybe a test group to quantify my findings.

Oh and I did not advocate massage therapy, sure try it, see if it may help you, but it diddn't work for me either. Verapamil helped but the side effects were worse than the relief in my case. And actually opioids did help mine but not the way you would think. I would only take 1 pill a day, half in morning and half in afternoon and it reduced the frequency of my attacks, diddn't help the pain though. I know they are dangerous but verapamil was more dangerous in my case. And I don't have insurance so I couldn't afford much else. Louisiana's health care sucks.

P.S. Your in my buddy list good freind, if I diddn't like ya you wouldn't be there.

Quote:

I did not advocate massage therapy

OK, but that's what it sounds like to me, and maybe to others. Could you explain the difference between what you are advocating and massage therapy? And for the record, I had someone else in mind when I wrote that line. That it felt like it applied to you is probably because of the word "newbie." You need to know I still consider myself a newbie, since so many of these fine warriors have been around for a long time together: Don, Jerry, Joe, Bob, Potter, Brew, Linda, Jon, and the list goes on. People I've come to rely on for their sagacity and experience. I am pleased to be part of this very worthy endeavor. I hope you are, too. blessings. lance

Sorry for the misunderstanding, I've had a few messages from some OTHERS who told me that I know nothing, and I assumed you were of the same mind. I see now that you are not.

The difference is that in massage therapy they are taught not to go as deep or as hard near the spine as we need, its a liability for them if something happins. Also, if you are the same as me with the knot/knots near the top of the spine on the CH side, in or around the sub-occipital muscle group, then you will have to work on them yourself. I found in my case that I had to constantly work on them all day long, something else massage therapy can't do, unless your married to a therapist.

So this is what I do, there are four main areas to look for, 1st is the spine near the base of the skull in or near the sub-occipital muscle group, 2nd is the side of the neck midway between the head and shoulder near the omohyoideus muscle, 3rd is the front of the neck at the base of the sternocleidomastoideus muscle near the clavicle(collar bone), 4th is near the ear below it about an inch and a half along the sternocleidomastoideus there is a gland there that swells, you have to be careful in this area though it is a known pressure point. There may be more spots, everyone is different and the nerve could be pinched in a different spot. Each person must experiment to find theirs.

I work the areas as hard as I can stand it and then alternate with an icepack, be VERY careful when using an icepack on the side and front, as there are 2 main arteries/veins near those spots. This is what I did, and it stopped mine. I just look at them as my enemy and wipe them out.
I hope this helps and if you have any questions please feel free to ask.

I also would like to ask if anyone has had a an ultrasound/MRI of the lymph nodes in their neck/head? And what were the results?

I'm currently looking into some herbal remedys as well and will keep you informed of the results. Ashitaba looks promising, but little is known about it, I ordered some seeds to grow some and will conduct the trial on myself whenever my CH's return.