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        Cluster Headache Help and Support >> Getting to Know Ya >> I found a safe haven - you guys
        
(Message started by: jacquibim on Feb 5^th, 2008, 6:41am)

Title: I found a safe haven - you guys
Post by jacquibim on Feb 5^th, 2008, 6:41am

Hi, my name is Jacqui and I have just found this site this morning. How glad am I to have found it. I felt before that I was in a wilderness, that nobody knew what ch were like, that nodoby cared and I was the only one. How wrong was I!!!! It is good to see all support that people give. Thank you so much for the site. I shall definitely be using it. I have been getting these hell headaches for ten years, usually 3 or 4 a night and also getting them during the day, 2 or 3 sometimes. I have more investigation to do on the site and hope to get some hints from others. My husband drinks energy drinks - no he is not a cluster head, but I shall definitely be pinching some of his drinks. Thank you so very, very much. [smiley=sayyes.gif]

Title: Re: I found a safe haven - you guys
Post by Kevin_M on Feb 5^th, 2008, 7:16am

Hi Jacqui, good morning.

Welcome, glad you found this site, a lot of people here are familiar with your clusters experience and have improved managing with it by being here. Let us know any questions, read a bunch, and just hang out with other supporters and sufferers who are eager to share ways of caging this pain.
The "getting to know ya" board is a good way to say where you've been with these and anything else you'd share with friends committed to improving what we can for you as a cluster community cohort.

Title: Re: I found a safe haven - you guys
Post by maryo on Feb 5^th, 2008, 8:54am

Jacqui, It can be even lonelier as a female clusterhead. The first time I asked my doc if I could be having cluster headaches, he replied that only 5% of people with clusters are female, and besides, they get a bunch every day and mine were only every other day. I guess I didn't have the presence of mind to say, So what do you call a headaches that is like having a sledgehammer come upside your head at 4 a.m.? Most likely he (like others I had seen) secretly diagnosed me with "Hysterical Female Syndrome."

Anyhow, welcome to a world where you will be understood, helped, and empathized with! Incredible, huh?

Title: Re: I found a safe haven - you guys
Post by Guiseppi on Feb 5^th, 2008, 10:17am

Welcome to our world, now the noseyness starts!! When you get a chance, tell us what you use as a preventative medication, what you take when the headaches hit, what has and hasn't worked for you in the past. The beauty of this board is the info sharing. Maybe we can make some suggestions to your routine, maybe you'll drop a new pearl on us that'll help someone! It's one of the greatest facets of this place, the combined knowledge of thousands of sufferers!

Welcome home ;)

Guiseppi

Title: Re: I found a safe haven - you guys
Post by imfareware on Feb 5^th, 2008, 12:19pm

Welcome, I hope the pain goes away fast!

Title: Re: I found a safe haven - you guys
Post by caoimhin on Feb 5^th, 2008, 8:38pm

Hi Jacqui

I found this website recently aswell so I know what a great feeling it is to find it for the first time. You'll get plenty of great advise over next few days. Keep an eye out for LeLimey she'll sort ya out with all the info ya need to get oxygen therapy of the NHS, which is a must according to all these guys. Havnt had a chance to try it out myself yet but it sounds like the weapon of choice when doing battle with the beast.

Sending pain free thoughts

oh yeah i found that if ya necked a few pints of cold water with the red bull it works even better.

Title: Re: I found a safe haven - you guys
Post by jacquibim on Feb 6^th, 2008, 5:01am

Hey you guys, I am overwhelmed by your replys, thank you so much for all your support

In reply to guiseppi and his stating the nosiness starts here, here goes with my medication to date:-

When I first got them my doctor prescribed Ibroprufen - no good, then Dihidrocodeine, (I think - it was so long ago), also not much good for long. Then I was given Pizotifen to take at night, which worked for a while but not for long, so I was given Zomig Rapi-melt, which were brilliant, the CH's went after 10 minutes, but my system got used to them after a year or so.

My doctor sent me to a headache specialist who gave me injections, one in my shouder, one in my neck, one in my scalp and another in my left eyebrow. Boy were they painful - and after the doctor peeled me off the ceiling they worked from that night on, brilliant, never had any more for about 8 months - brilliant. When the CH's came back I had some more, but they didn't work for about a week, but then stopped the pain for about 4 months, so again I had the injections, which didn't work for about 2 and a half weeks so I was given Imigran Radis to go with, but once they worked they left me pain free for about 6 months. I got the demons atgain, so I went surfing and found the OUCH site, where I saw about channel blockers, printed it out and showed it to my doctor, who said, "oh yes, Ihave heard these work". If he had heard they worked, why didn't he give me them before, but never mind, I took them and voila, no more CH's from that night, until 9 months later, whlich was just before Xmas 2007, so I went back on the channel blockers, which did no good, so I upped the dose, which worked for 2 nights, and then the pains came again, until now I am on triple the original dose and hoping - I dare not say yet if this is going to work as I only started on that dose yesterday! I h ave read that energy drinks work wonders, with coffee, so I shall be trying them, I am so desperate that I will try anything, but hey - I read one post where someone has been getting CH's for over 30 years, and at just over 10 years I am just a novice and I have always said that there is always someone, somewhere worse off than you are, so I am thankful that I have not had them that long. Ihave also read that people say that CH pain is worse than having childbirth, I have had four kids and yes, I can vouch that CH is worse than having kids, far worse. Again I thank you for your support. Oh yes, I have tried Oxygen and it doesn't seem to work for me. Oh yes, and I may be a bit of a dumb brain, but when people say they reach for coffee and energy drinks on the onset of a CH, does it have to be black coffee or can you have white. I can drink black, but I'd rather have white?? An yes MaryO, this message board is incredible, Ijust wish I had found it much earlier.

Title: Re: I found a safe haven - you guys
Post by jacquibim on Feb 6^th, 2008, 5:50am

I keep reading about "shadows", please can someone tell me what they mean by shadows?

Title: Re: I found a safe haven - you guys
Post by Kevin_M on Feb 6^th, 2008, 12:22pm

It sounds like you are episodic.

on 02/06/08 at 05:01:05, jacquibim wrote:

My doctor sent me to a headache specialist who gave me injections, one in my shouder, one in my neck, one in my scalp and another in my left eyebrow.

Looks like an attempt at a preventative. Don't know what the injections may have been, botox?

Quote:

I went back on the channel blockers, which did no good, so I upped the dose, which worked for 2 nights, and then the pains came again, until now I am on triple the original dose and hoping - I dare not say yet if this is going to work as I only started on that dose yesterday!

If that is something like verapamil, a gradual, scheduled tapering is best to increase dosages, with a doctor's consent. The same with decreasing. To build to an effective level can take a week or two depending on the daily dosage (for instance something like 360-480mg per day).

Quote:

I have tried Oxygen and it doesn't seem to work for me.

There is an oxygen link to the left for good information to stay compliant with for effectiveness. Make sure it is 100% pure oxygen at a high flow, like 12-15Lpm and using a non-rebreather mask breathing only the oxygen for 8-10 minutes consistently, all essential for it to be an effective abortive.
It's worth another try while an effective preventive level is attained and for any normal hits and breakthroughs, saving on any excessive use other prescribed abortives if needed often. Very useful.

Quote:

can someone tell me what they mean by shadows?

Well, this can be a low to increasing pain near where you normally feel a cluster hit. It can persist at that idling level sometimes for awhile, maybe not materializing as an attack and diminished by caffeine or strong pain reliever. Sometimes it can be a slow, prolonged build up to a hit.
For me, it sometimes signals a preventative is barely containing a normal would-be attack and I pay attention to them, under a sleeping circumstance it may develop further in time.

Just some basic thoughts. :)

Title: Re: I found a safe haven - you guys
Post by Guiseppi on Feb 6^th, 2008, 12:33pm

A lot of what Kevin just said!!!! We take a lot of high horsepower medications to tame these things, many of which have substantial affects on our circulation system. Always best to work with your doctor when raising or lowering any dosing to prevent serious problems.

With that caveat, if it is verapamil you are taking, people have had to go as high as 960 mg a day to reach a therapeudic affect. It requires monitoring while you increase the dosing so you don't mess up your heart rate.

Many people have found a lack of success with the oxygen was because of the delivery system. You need 100% oxygen delivered to your lungs, no outside air, no re breathing the air you breathe out. Nasal canulas and re breather masks are worthless. I can abort a headache, that is become completely pain free, in as little as 6 minutes. Certainly worth reading the link on the left and compare your experience.

Welcome again to the board, I hope you can find some relief here. Wishing you a short cycle and a long peaceful remission! ;)

Guiseppi

Title: Re: I found a safe haven - you guys
Post by RichardN on Feb 6^th, 2008, 12:40pm

Hi and let me add my Welcome

What we refer to as shadows are that "shadow" of pain/pressure behind the eye on your affected side which you recognize as the beast lurking . . . may or may not develop into an attack. Might have one or two or several . . . sometimes they might seem constant. For me, it's a sign to pay attention . . . if it increases to what I personally refer to as a "hard" shadow . . . I'll go ahead and use the 02 to prevent it from going any further.

Just my guess, but I would think that our shadows are also affected by the wide array of meds that we use . . . . in that while we consider that preventative "X" is keeping the beast under control, . . . . it might not totally kill him.

You said you had used 02 and that it didn't work for you. At what flow-rate did you use it? What type of mask did you use? Many here had 02 fail the first time it was tried because the flow was too low (should be 12- 15 lpm) or they used the wrong mask or a nasal canulae (should be a non-rebreather mask . . . the one with the bag). It might be worth a try, and your NHS covers it.

So glad you found us. One of my favorite mottos on this board is, "Nothing works for everyone, but SOMETHING works for everyone" . . . . and here, you have a very good chance of finding the "something" that works for you.

Keep reading, keep asking.

Be Safe, PFDANs

Richard

Title: Re: I found a safe haven - you guys
Post by imfareware on Feb 7^th, 2008, 6:05pm

Hi Jacqui, welcome, I found this site a while back, but with my bout of CH's this year I decided to join and start reading, I wish I would have done that a few years ago. It might have saved me some pain. I enjoyed the drugs I use to get from the doctors (I would take them recreational after my headaches left). But that got old. Oxygen has held them off this year for me. Who knows what lerks in the future, but now I have a list of drugs that I can give to the doctor other than lortabs, oxies, and valium. Hang in there!

Shadows for me are lurkers, headaches that start coming on as a nusience, making me uncomfortable, I can usually catch these and stop them prior to becoming a full blown issue.

Title: Re: I found a safe haven - you guys
Post by jacquibim on Feb 8^th, 2008, 8:42am

With all the advice I got from you guys, I sat there yesterday with cans of energy drink, cups of coffee and glasses of water and slamming them down my throat - I was on a real caffiene buzz - but oh boy it did some good, I am sitting here now with my fingers crossed, so you can expect some typo's but I was not woken up last night by 'them'. I would say you could not believe how relieved I feel, but I do know that you would believe how I feel, cause you have all, every one of you felt the same!!!

Big thanks. J

Title: Re: I found a safe haven - you guys
Post by imfareware on Feb 8^th, 2008, 5:53pm

Hey Jacquibim, I found out that sitting around waiting for them doesnt help, try doing normal activities around the house, and try to block them mentally, when they come tell them to leave. Its your head, I know the pain you feel when you have them, stay tough and dont let them win!

Title: Re: I found a safe haven - you guys
Post by jacquibim on Feb 10^th, 2008, 9:38am

Thanks for that last post, I know you should not wait for them to come but it is difficult because you don't want them to come at you by surprise. Having said that, I have been dosing up with the energy drinks. coffe and water - water - water, feel like I am floating but also feel like I am in heaven, since I started doing this 3 days ago I have had pfdan's, and will continue taking all these. Thanks a hell of a lot. I have been reading different posts from dirferent people and the info is going round and round in my head, but I am starting to make sense of it all slowly. It is so good to have hooked up with this site, because it makes me realise how lucky I am not have the ch's as bad as others have them. Thanks!