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(Message started by: Shameless on Mar 18^th, 2004, 11:28am)

Title: Hello
Post by Shameless on Mar 18^th, 2004, 11:28am

[font=tahoma][/font]I just wanted to say hello and thanks for letting me join. I have suffered from migraine headaches for almost 15 years now, and have just recently been diagnosed this past January with cluster headaches as well. When I first got them, I'd get one every hour on the hour, and it'd last only 15 minutes or less. Now, though, I get between 3-5 a day and they last between 20 minutes and an hour or so. My neurologist says I have atypical clusters. There's some other words she used as well, but I can't remember what they are...probably couldn't spell them if I did remember them. :-/
I'm currently on 240 mg Verapamil 2xdaily, 10 mg. Lexapro 1xdaily, 2.5 mg Frova 2x daily, and she just added an anti-seizure medication also. NONE of these are working at all. I keep telling her that, but who am I? Just the patient! She did have me taking Actiq (narcotic) for my migraines, and I've found that when I'm on that my clusters are SEVERLY less painful and only last about a third of the time they normally would. BUT, she won't let me use that for the clusters. I don't understand cuz she even told me that clusters are also called "suicide headaches" and for good reason, if you ask me.
Now I'm in the process of trying to find a new neurologist that's willing to listen to ME for a change. I have an appointment April 1st with one who also specialized is pain management, so I'm crossing my fingers that he will listen.
My other choice is to go to an anesthesiologist/pain specialist. I'll do that if this other neurologist doesn't work out I guess.
I just feel so helpless at times, especially when the clusters hit! How do you deal with them? I feel like I'm losing my mind. My husband walked in on me one time and I was banging my head with my fists...he was like, "Oh, I'm sure that helps."
Not really, but what else can I do?
Like I said, I've had migraines for about 15 years, and usually end up in the hospital with THEM when they get bad. I have NEVER had a migraine in my whole entire life that's been as bad as these cluster headaches. I feel like my skull is going to rip open, and just when I feel like I can't take anymore, it's over and I'm exhausted. Last night I had one for about an hour, and as soon as it was over, I fell asleep. They're horrible! How is a person expected to live like this? :'( :'( :'( :'(

Title: Re: Hello
Post by Superpain on Mar 18^th, 2004, 11:49am

I feel ya...
I'm 34 and got them at 16. I'm on my 12th or 13th cycle. and my cycles range from 6 mo to over a year on this one.
You just have to remember that the headache WILL end at some point.
Beyond that... I don't know. I've been coping for 18 yrs and I still ask those same questions everytime I have one. I think everyone does.
Most here say to try oxygen... I'm on the quest to get that now. Previously all I've ever used was stadol, a narcotic nasal spray. It used to kill them when I was younger, but now it just sort of makes the pain a tiny bit less "urgent"...
Over the years I have learned several techniques for accupressure, holding certain nerves and/or veins in the neck, cheek, temples and face. It doesn't work for very long, and it doesn't work every time, but usually I can squeeze out a few seconds of relief here and there...

Most of all remember your not alone. There's tons of good info here!
Welcome.
Hopefully your cycle will be short.

Title: Re: Hello
Post by Shameless on Mar 18^th, 2004, 12:29pm

Thanks. It's nice to know that I'm not alone in this. Although, when they hit, no matter how many people you find with the same problems, it STILL feels like you're all alone.
I'm so sorry you've been suffering for so long. I couldn't imagine having them for that long. Right now, since they only started a few months ago, we're still not sure how long they'll last, or if they'll go away at all. That's hard, not knowing. Everyday I get up and HOPE this will be the last, but it never is. You're right, they do end, it just feels like they never will.
This is the worst pain, by far, that I've ever felt in my life. Seriously though, I don't know how much longer I can handle this. I know you said you've had them for many years, but I just don't know how you can do it! I don't know if I have the strength much longer. I'm in the midst of being diagnosed with either Rhumatoid Arthritis, or Fibromyalgia & Chronic Fatigue Syndrome..plus having TONS of migraines, and now the clusters. When will it all end. I'm fed up with the pain & I feel so weak all the time. I know you've probably heard all of this before, and I'm sorry, I just don't know if I'm as strong as you are.
Thanks for the response and all the luck in the world to you with your struggles too. I hope you find SOMETHING that helps you!

Title: Re: Hello
Post by Superpain on Mar 18^th, 2004, 1:04pm

Well there's one thing for sure. Clusters will not kill you. Personally, I think that's the worst part of it...
At least if you have an anyeurism burst your most likely going to die before you hit the floor (if your lucky)... But with clusters you get all the pain but no rlief of being able to escape.
So unfortunately the old saying comes true "what doesn't kill you makes you stronger."
I would consider myself as having an extrordinary threshhold for pain, but it's certainly not by choice. And no matter how many years I or anyone else have had them, a strong one will turn you into a little whimpering bitch in no time at all.

I know everyone is different, and this isn't very comforting, but before my cycle ends they build up in frequency and strength to the point where I'm no longer getting headaches, I'm getting breaks from headaches... Meaning more hours of the day are spent in what feels like life threatening pain than being pain free. It builds up to the point of breaking my sanity and leaving me in physical ruin. And then *poof* they're gone. Then I get anywhere from 6 mo to 2 yrs without a headache.

At some point I'm sure they will go away for you, but it will most likely get worse before it gets better, unfortunately.

Scalding hot towels give me a minute or two of slight relief on really bad ones. You might try that if you have'nt. Try to figue out your pressure points... And keep reading here! I just came upon this place 3 days ago and have learned a ton. I've never had any meds work for me, never tried O2 (yet), never knew there was anyone else like me...

So, on the bright side (as if there were one) you have a great deal of power to fight this that I never had. And I made it! So hopefully you will have an easier time.

Oh yeah, I've had cfs too. That's no fun either.

PF vibes 2U!

Title: Re: Hello
Post by Giovanni on Mar 18^th, 2004, 1:59pm

Hi Shameless,

For treatment of clusterheadaches you'll need a neuroligist who specializes in headaches. For you other medical problems listed perhaps pain managment might be appropriate--I don't know?

Personally I have episodic cluster headaches usually 4-6 months a year which starts in late February or early March. This year I completely avoided the cycle by the "alternative" treatment. I wish you the best of luck of pain free time ahead. Welcome to this forum.

John

Title: Re: Hello
Post by pubgirl on Mar 18^th, 2004, 2:33pm

Hey whoah whoah whoa folks!

before we gallop off with CH treatments, usual preface of "I'm not a Doctor but..."

Shameless:

I would VERY STRONGLY urge you to see a neurologist that specialises in headache if yours wasn't.

I would get them to check the Ch diagnosis. I say this because:

1. The frequency of your attacks and the duration of some of them also suggests a condition called PH or CPH. Paroxysmal Hemicrania or Chronic Paroxysmal Hemicrania

2. The drugs you are being prescribed are a not only one helluva cocktail, but they are an unusual cocktail for CH. They also seem not to be working.

3. It could well be worth trying a short burst of Indomethacin which is 100% effective for PH/CPH but works for very few Ch sufferers. It is used for this reason to rule in or out the Cluster versus PH/CPH dilemma.

I hope this might help.
Please don't panic, getting the right diagnosis is so important as the several headache conditions called TACS which are often similar all have different treatments which work. Right diagnosis means you CAN get relief. A certain CH diagnosis might suggest other treatments than those you are being given.

Wendy

Title: Re: Hello
Post by thomas on Mar 18^th, 2004, 4:31pm

Shameless, welcome aboard, do not be discouraged, you will make it, we all have our ways with dealing with this affliction. You will find much love, understanding and support here. :)

Title: Re: Hello
Post by Tiannia on Mar 18^th, 2004, 4:40pm

on 03/18/04 at 11:28:56, Shameless wrote:

My other choice is to go to an anesthesiologist/pain specialist. I'll do that if this other neurologist doesn't work out I guess.

My husband walked in on me one time and I was banging my head with my fists...he was like, "Oh, I'm sure that helps."
Not really, but what else can I do?

Welcome and sorry the same time. The pain specialist will not really treat the HA that much. That is what I go to as I cant get my insurance to refer me to a neuro, they just keep sending me to Pain management guys. They will help you with the pain and try stuff that is primarily treatments for Migraines until they accidentatlly find one that works.

I understand you husband not getting it. He probably never will. I used to get migrains as well, and when the clusters started he acted like I should just be able to "take care of it" like i can do with a migraine. Get sleep and it is over. But these damn things are never over. We are here for you. Ask whatever questions come to mind. Read all you can and good luck finding a good doc.

PF Wishes to you,
Tiannia

Title: Re: Hello
Post by sandie99 on Mar 19^th, 2004, 5:35am

Welcome to CH world! :)

Best wishes & PFdays,
sandie99

Title: Re: Hello
Post by Shameless on Mar 19^th, 2004, 10:29am

Wow! Thank you all so much for your suggestions and support. Also thank you for welcoming me into your family. It really means a lot to me! It's wonderful to know that I have a place to go now, where other people (like me) know exactly what I'm going through.

My Neurologist does deal in headaches. She's been treating my migraines for the past 3 years...since I moved here to Louisiana. I think I already said, though, that I'm starting to have some problems with her, so I'm in the process of switching Neurologists. I see the new one April 1st, so we'll see where that goes.

As far as what KIND of clusters I'm having, my neurologist did say I have atypical clusters, and she gave it some weird name...maybe it was one that you listed, I just don't remember. I see her again April 6th, so I'll ask her then and let you know. I just thought it was a different KIND of cluster headache, but basically the same thing. So are you saying there's OTHER treatments for the ones you listed? I mean, that I MIGHT be able to get some kind of relief afterall?? That would be so great! I'll try to find out as soon as possible, the name she gave my clusters.

My husband has been wondering why my doctor hasn't tried the Oxygen yet. You see, my husband did some research online, and he read that some people get relief from Oxygen. He also read that the cluster attacks usually only last between 6-8 weeks and then go away for a few years before getting another attack. (Which is why he seems to be getting annoyed at the fact that it's been over 8 weeks.) I tried explaining to him that every cluster headache patient is unique. Like my Neurologist said, "We won't know how long the episodes will last until they decide to just stop." And we won't know how long the remission will last either, since this is my first bout. She said it could last a day, a week, a month, a year...OR, I may never get another cluster headache for as long as I live. But we won't know anything, basically, until it happens. I think that's the part my husband has a hard time with. The one thing I am VERY thankful for, and EXTREMELY lucky in, is the fact that I married a wonderful man. He may not understand the headaches, (I don't really either though!) but he's still, by far, one of the most supporting people I've ever met, and he would do anything in his power to help me to feel better. Sometimes I think that my migraines and clusters hurt him more than they do me. (At least emotionally.) He owns an Oil-Well Drilling company, and is in charge of a lot of people...He's in control. With the headaches I have, he's NOT in control. I know that's hard for him because he has no power to help me and that's what hurts him the most.
My daughter even tried giving me back/shoulder/neck rubs while I'm having a cluster attack. (She's 12.) What an angel!
So I guess, looking at everything from someone else's point of view, I am a very lucky person. I have a ton of support at home, not everybody has that. And now, I have all of you. What a blessing!
I can't thank you all enough for letting me be a part of your wonderful family. I don't even know how I found you...I've done searches on cluster headaches before and have never found this site before. This time it was almost on top of the list. I guess I was MEANT to find you. :) Whatever the reason, I'm just glad I did. Not only can I GET support, but I can also try to GIVE it to others as well. That in itself can make a person feel a hell of a lot more useful. (If my having these horrible things can help someone else not to have to suffer so much from theirs in the future, then it'd all be worth it to me.)
Wow, listen to me going on again. Sorry, but believe it or not, just talking about everything that's on my mind, in here, really does help quite a bit. I don't feel so alone anymore.
Thank you everyone! ;)

Title: Re: Hello
Post by Shameless on Mar 23^rd, 2004, 4:18pm

Well I talked my doctor into letting me try Oxygen at home. The only problem is that insurance doesn't cover it...not unless you have lung cancer. I found out that the portable unit costs a little over $30 and each tank costs $15. (3 tank minimum) The only problem is that the tanks don't hold too much, and I'd have to basically spend $15 a day...the tanks would only last ONE day...eeekkk!

So back to the drawing board AGAIN!

Title: Re: Hello
Post by thomas on Mar 23^rd, 2004, 4:20pm

15.00 a day beats the hell out of the 50.00 a day I used to spend on trex injections.

Title: Re: Hello
Post by Superpain on Mar 24^th, 2004, 3:36pm

on 03/23/04 at 16:18:03, Shameless wrote:

Goto a welding supply shop and you can get an "E" tank for around $100-$120. That's enough for about 20 headaches at least. A regulator will be about $75, and it only costs about $18 to get it refilled.
I was not able to get the medical setup either. I haven't even got a mask yet.
So I went to lowes and got a 1/2" acrylic hose, 10' long and a small hose clamp. It connects perfectly to the welding regulator, and by just barely cracking the regulator valve for each hit then twisting it off between hits, it conserves the O2 very well. I hit straight off the hose for now, and in 15 -25 hits off the hose the HA is gone. I get an average of 10 HA's a day lately and the tank lasts 2-3 days for $18...

It is a life saver!
Try it.