Welcome home Margi.  You keep reading and learning.  The best weapon in this fight is a well educated clusterhead.

I'll let you read some more but be sure to post back with questions as they come to you.  Lots of very helpful folks around here with years of experience effectively fighting the battle.

Oxygen therapy is a God send for many of us.  Your post suggests it was some help in the hospital.  Well, it can take my pain away completely in 5-10 minutes.

Good luck and let us know how it goes...

-Dennis-

Dennis,
I think his name is Bud and he was thanking Margi  .

Here is my situation as of now. You may think that we Canadians have really good Health Care, but you get what you pay for. Can’t get in to see my family Doctor for another 3 weeks, Advised to go to the hospital, there I told them I take Lithium for CH’s and they looked at me like I had 2 heads, I think they thought I was Bi Polar because that is what they  proscribe for that disorder. They started to talk to me like I was a child, talking very softly and clear so I would understand them. They gave me a prescription for Duralith that the pharmacy can’t find in there medication book, I asked about oxygen therapy and again they gave me a prescription for home therapy, no mask just nose prongs and a flow rate of 2 LPM. So here I sit waiting for the next attack. You know what It’s like, for me it’s like someone is pointing a gun at your temple and they are going to pull the trigger any minute but you won’t die from the shot you will just feel the unrelenting pain for a long time. Looks like I have 3 weeks of hell before I can even start any therapy. The water, water, water thing did not work, still got an attack but they are only 20 min to half an hour right now, and I know 3 weeks from now they will be an hour long. My attacks usually go up to 3 hours after a couple of month into a cluster period, and the period lasts for about 6 months, and then remission. Could be one year, could be 6 years, but don’t be fooled my fellow cluster heads, I am 55 and not out of the woods yet.
Thanks for all yhe comments, Bud

Thanks Marc,

     I have a friend that works for Air Liquide AKA Liquid Air would have called him if I had to, but, I just got some good news, a nurse from the company that is supplying the little devise I got for oxygen is coming over tomorrow and is going to fix the O2 problem and get me a proper prescription, she said she knows all about CH’s. Also I just found out that my insurance policy covers the home oxy therapy, I don’t know whether the jump for joy or ball my eyes out. Don’t worry not going to cry, I save that for the attacks, ha ha, well more like whining and cursing.

Bud

Hi Black, Dennis, bejeeber,

     The device they gave me is called Vision Air; it’s an air separator and converts the air in the room to 97 percent oxygen, there is no tank. It is set up for 2 LPM but can be cranked up to a whapping 3 LPM. It’s a joke for CH’s……and $200.00 a month to rent. Should be OK tomorrow when the nurse gets here and fixes the problem, she is going to get my doctor to write the proper prescription, I have all the info I need from this site, and the rep from Pro Resp lives 2 streets over from me and has the tank and all the Kit.

     Usually my Doctor is pretty good, he knows my history and gives me what I need, but his receptionist will not bend the rules for an appointment. He is closed today and every Wednesday (must be golf day) but I am going to call back tomorrow and read her the riot act. I know if the doctor knew I was waiting so long he will be pissed.

Yes Black, you should have called a foul

Thanks Dennis, bejeeber and every one for the comments, it’s a good feeling to know that you can talk to someone that understands what we are all going through. This site is great.

     Hopefully the next dance with the Devil we can all give him some trauma and say, “consider your self punted through the goal post of life”

Bud

Hi Linda,

     About the children, I am sorry if I implied that these CH’s are caused by any kind of head trauma, I was just wondering. It makes me shiver to thing a child is suffering through this. My Wife got a call from my Daughter one day and she asked her to explain the symptom I was having because my Granddaughter at the time was having bad headaches and she wanted to know if they where hereditary. When I heard this I got that shiver from my head to toe. They lasted about a month and then were gone. This was 2 years ago; she is 10 now and so far so good.

     I have always had this condition since I was a child but did not know what they where until I was in my 30’s. I am 55 now and just starting another cluster period or should I say cycle as you call it here. I have had these headaches all my life and was always alone, most of the things people talk about on this site I know to well and it brings back a lot of bad memories, but I am going to arm myself this time and if it tunes out that my Granddaughter has CH’s we will fight them together and I won’t let what happened to me happen to her. She will not suffer alone. She will know where to look for help and she will know how to fight them. I thank God that I found this place and it has confirmed for me a lot of questions that I have always had.

Welcome Bud! I get the impression you're going to be a great addition to the board.

As far as hereditary concerns, the odds of a direct relative getting it are a little bit higher then the general population, but still relatively small. That being said we have several parent/child members on the board. On the one hand, it sucks knowing what your kid is going through, on the other hand, what a blessing to have a parent who already knows the ropes!

Great to have you on board.

Joe

Linda is right about head trauma not causing CH.
BUT it can cause a disorder which APPEARS to be CH but which is described in the medical literature as, "cluster-like" headache.

Means--the symptoms are like those of classic cluster headache but they often do not respond to the usual treatments for true Cluster (or may get a partial or short duration response--but not what one would expect.)

Point being: when you have a history of head trauma you need to be in the care of a headache specialist--one with the skills/training/experience to sort thru the multiple, possible sources of your "cluster" pain. Do you have true CH, with the head trauma being unrelated, or is has the trauma triggered off a symptom picture which  is "cluster-like".

It's often a messy diagnostic problem so patience is required, both on your part and that of the doc.

Thanks Joe and Hi Bob,

     The head trauma that I refer to happened when I was very young, I don’t know if I had the headaches before or after that. I don’t remember much about the headaches only that a baby sitter said to me once “boy you get a lot of headaches” I do remember throwing up and having a very bad back of the neck and in the forehead pain as a child. Now as far as CH go, I do remember as a teenager and as a young adult having one sided pain and had always thought it was sinus related. I joined the Military when I was 19 and during the early years they did allergy tests and x-rays to try and find the problem. I was given pain killers and nose sprays but nothing worked. I then started to define my symptoms and was determined to get it right the next time I got the headaches, by this time I was in my 30’s. My symptoms are 100 percent as in the quiz on this site. When in my 30’s I remember gong on sick parade with a bad, what I thought was a sinus headache, but was determined to explain it right to the Doctor. He was a young Capt., just out of medical School and that was the first time I had heard the words Cluster Headache. He said they are very rare and he did not know much about them. There was no treatment for them at that time that I was aware of. So, back on the pain killers and nose sprays. I just put up with them until I retired at age 39. Periods of remission would range from 6 months to years, 6 Year most recently. Back to my story, I’m sorry it’s long but it covers about 45 years, since around age 10. Out of the Military and now I have a Civilian Doctor fortunately for me he knows what CH’s are. He booked me in to see a specialist; he told me that if I looked up the word Cluster Headache in the dictionary it would read “those are the headaches that Bud gets”. Long story short, Couple of bad cluster periods since then, prescribed Lithium, worked/ did not work at times. Did not here the word abortive until this week and you know the rest of the story.

Got to go to work now
Bud

Hi Bob,

     Had to pound that last post out fast, I drive a school bus and didn’t want the kids to wait.

     Pretty much of what I can understand of that last post you made is 100 percent me, unfortunately for me.

     I found this on the web, is this, what you are referring to?

Cluster-like headache and idiopathic intracranial hypertension

Cluster headache (CH) is a well-defined primary headache syndrome, but cases of symptomatic headache with clinical features of CH have been previously reported. Idiopathic Intracranial Hypertension (IIH) is a secondary headache disorder characterized by headache and visual symptoms, without clinical, radiological or laboratory evidence of intracranial pathology. Both papilloedema and IIH-related headache are typically bilateral, however asymmetrical or even unilateral localizations are described in literature. We report the case of a previously headache-free woman who presented cluster-like headache and asymmetrical papilloedema related to IIH. In our opinion the asymmetrical presentation supports, in this case, the hypothesis of cavernous sinus involvement in the IIH-related cluster-like headache pathogenesis.

Also found this

Idiopathic intracranial hypertension (IIH) is a disorder of increased intracranial pressure that may have papilledema with normal imaging study results. Headache is the most frequent symptom. Although the headache characteristics are indistinguishable from the symptoms of migraine headache, accompanying symptoms of increased intracranial pressure, such as pulsatile tinnitus, transient visual obscurations, and radicular neck pain, may aid in the diagnosis. Magnetic resonance imaging, including venography, is essential for the diagnosis of the primary idiopathic intracranial hypertension. Medical treatment for the headache includes weight loss for obese patients, diuretic therapy, and migraine preventive medications. If medical therapy does not abolish the headache, surgical options should be considered. Because patients with IIH have a poor quality of life, patient education and supportive materials are important.

Bud's reply to the above,

     I don’t have symptoms of migraine headache or neck pain, I get tension headaches like most people but nothing a couple of Advil won’t cure. I don’t have transient visual obscurations or any visual symptoms; I wear glasses but did not until I was in my 40’s
I don’t think I am obese; I have a beer belly like most men my age.
There is a lot of mumbo jumbo there that I don’t understand so I will ask my Doctor what he thinks just to be sure.

     Most of what I have read on this site is exactly what I would have expected to find had I known any other cluster heads and I can relate to most of the stories here, The Kip scale is almost exactly how I describe my pain the doctor and that was twenty years ago.

     If I found out that I had to go through another round of diagnosis and maybe it’s this and maybe it’s that, and still have this damn pain, I don’t think I could take it. This would be Kip 11 lights out game over.

Brought this on myself for wondering,
Bob you sure no how to take the wind out of someone sales,
Thought I was going to beat the beast this time, you got me wondering again.
Bud

Quote:


Kip  (From the scale we refer to around here)

Bud...I just love your attitude.  WE welcome you to OUR little corner of the world where we asll try to help EACH other.   

Hi all,

     I am overwhelmed by the amount of medication people take around here, so many choices. Up until now I thought Lithium was the only med for CH. I used to take pain killers years ago but that was futile so I stopped and just put up with the pain. I even stopped going to the Doctor because I never got anything that would work. I would just go off on my own, sit and wait a while, hoping the pain would go away, then start walking around when it didn’t, pacing and saying to myself “take the pain” over and over again. This was my drill. First time I took Lithium it worked very good most of the time, still got the odd attack but I had my drill as indicated above. The next cluster cycle the Doctor changed the Lithium to Duralith, Lithium Carbonate 300MG twice a day. He said it was long lasting and would still be affective if I forgot to take a dose. This did not work; it was like I was not on any medication at all. Started to take more each day no results, just about overdosed, think I did.  Went through that whole cluster cycle doing the drill. This time I’m going to try the same Lithium that I had the first time, get regular blood test to ensue the dose is right. It’s a good thing my cycle starts of with short attacks. It’s like a warning to get ready, but until now I had no ammo to put in the gun, just an empty magazine. I’m a retired Military Sergeant, always thought all that training would'nt be of much use in civilian life.

The ammo box is full, loading mags,
Bud