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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New here, intro and questions
        
(Message started by: ShannonL on Jan 4^th, 2006, 10:26pm)

Title: New here, intro and questions
Post by ShannonL on Jan 4^th, 2006, 10:26pm

Hi I'm Shannon. Live in SC. 34/F. Started having migraines at age 15 and CH at 16. MD's and my Neuro tried a laundry list of drugs but we were never successful at getting a treatment that worked for me. By the time I was truely diagnosed w/CH in 1994, I'd given up on drugs - stupidly refused to try any more. Lived with the recurring cycles every 13 months (usually lasting about 10-12 wks).

Now I'm using mushrooms to stop cycles, haven't tried using them to prevent by dosing every 6-12 months as some have described... but considering it.

My history: 2003: used a tiny dose for the first time - about two weeks into the cycle and within a couple days I was PF. Lasted 15 months before cycle returned (I've been religously on a 13 month cycle ever since this started back in the 80's)

2004 - dosed in second week of cycle, waited 5 days, dosed a little higher and was PF after a couple more days. Again this remission lasted 15 months instead of 13.

2005 (december) - dosed when shadows were getting going (in the end of the 1 wk of shadows) had a crazy Kip9 that night. Slowly dwindling on kip scale through the week down to 4-5's. 6 days later, dosed a little stronger and was PF for 4 days, then had a Kip 7, then a day of shadows around Kip 1-3. Dosed again last night around 9:00pm, woke at 8am with a 7 which quickly grew to a Kip 10. Rolling and screaming, head banging and crying, head grabbing and squeezing and praying for God to just let me die rather than have more pain.

When it was finally over I slept until 2:30 today (obviously didn't go to work) I almost never get CH during the daylight hours. Anyway, I came to my computer I've been on your sight all day, reading posts. I've been here many times reading all the info, but never posted.

I'm scared now. I've been so relieved for the past two years, after successfully stoping the cycles. Now I'm worried that I'm going to be like others who the mushrooms worked for but eventually quit working for.

I have many questions regarding this type of treatment but don't know if this is really the appropriate section of the message boards to get into all that. I'll sign off this section and post my questions in the medical treatment section.... just wanted to get started in the intro section.

Thanks for listening.
Shannon in SC
BTW: I cried in sadness and relief the first time I found this site - when I read the letters on the opening page describing other's CH. Until then, I really was alone. And though I've never posted on the message boards until now, I've not felt alone since then.

Title: Re: New here, intro and questions
Post by nani on Jan 5^th, 2006, 12:03am

Hi Shannon, Welcome and I'm sorry you're here. But I'm glad that you are here, we're here to help.
I can't really answer your questions, as I'm just not the most knowledgeable "busters" here. Hopefully someone will be along who can really help. I can tell you that I've used a combination of mushrooms and LSA seeds to keep my CH under control. I can also tell you that it's not unusual to have an increase in activity in the hours and days post dose. Last night's hit would fall into that category. I assume you know about this site:
www.clusterbusters.com
If you haven't already, look it over and have a look at the LSA FAQ.
Also look at the oxygen info link on the left. It's a wonderful abortive for many of us.
Do post over on the Meds board, you should get some more answers there. Keep us posted, OK?
pain free wishes, nani

Title: Re: New here, intro and questions
Post by Jasmyn on Jan 5^th, 2006, 2:55am

Hi Shannon.

Welcome here, this is an excellent place to be for a person with CH. You will never have to face this alone again as we understand.

Title: Re: New here, intro and questions
Post by Barry_T_Coles on Jan 5^th, 2006, 3:38am

Hi Shannon.

Welcome to the best nut house around.

Nanni has given you good advise and remember that when ever you need to talk to some one there is always one of the family on line somewhere around the world.
Feel free to ask anything there is no such thing as a dumb question here, it's one of the ways we find things out.

Kind Regards
Barry

Title: Re: New here, intro and questions
Post by Beastfodder on Jan 5^th, 2006, 8:29am

Shannon,

It's a funny feeling coming here - so many horror stories describing exactly what you're going through.

Always remember that from my first visit here - and there's so many similarities we share reading your post I've just got to add a couple of comments.

O2 and Clusterbusters has changed everything about CH for me, now it's a problem I cope with. Try emailing the very good people at Clusterbusters, there's even an excellent message board there.

I, for one, won't be giving up on 'shrooms.

Very best wishes

Andrew

Title: Re: New here, intro and questions
Post by seasonalboomer on Jan 5^th, 2006, 8:47am

Shannon,

Welcome to CH.com. Glad you found us, sorry you have a reason to.

I have not tried the "busters" treatment but have found many other answers for myself here. I'm presently to the point where, as a result of the tools I've found here, I'm hardly a "sufferer" anymore.

My last three cycles, which still occur, have resulted in very few hits and very low "magnitude". My arsenal includes: Kudzu, O2, Red Bull, Imitrex (which I've only used once because I had to go to a meeting and my other options weren't going to be available). It works for me and many others.

Every one finds their answers, or partial answers in some cases, here at CH.com. What a resource!
My life has been changed here.

I also know that if what I'm doing doesn't work anymore, thee are some other directions to go.

Good to see some more folks from the Carolina's signin' on.

Scott

Title: Re: New here, intro and questions
Post by ShannonL on Jan 5^th, 2006, 9:12pm

Thanks to Scott and all the rest for the welcome. It really is a relief to be here.... just wish I had more time to check in during the day from work.

You all and this site as well it such a God-send for me.

Thanks for being here.

Shannon

Title: Re: New here, intro and questions
Post by v0.1beta on Oct 4^th, 2006, 4:19pm

Hi folks,

I'm a 26 years old female vegetarian, green-blue eyed and with myopa, missing a sinus, and too lazy to post a pic, with no other ailment. I remember suffering and complaining about bad head aches when I was around nine, maybe before, then some day my mom got worried because she found me kneeled down and gently banging my head on the floor (still today, I have to repress banging my head when I feel the symptoms coming) , so she took me to the family doc and well, I was diagnosed with boredom and I'm not kidding, the prescription actually was changing school to challenge my intellect, so anyway it didn't do any good, so, along the years I was frequently misdiagnosed, put under the surgeon's knife, had two teeth pulled out, took paracetamol, aspirin and codeine to no avail until I was sixteen and finally met a neurologist who smiled broadly as I told him what the pain was like and told me I had CPH, he really seemed happy to break the news, prescribed Indocid and sent me home. So, the indocid relieved the pain somewhat, but I still had to go through the phantoms and shadows, sweat and the twinges, and it felt very strange, kinda numb and kinda high in a bad way, and I could not behave or stand the company of friends. When I moved to Canada at 18 (I was born and raised in Belgium), I ran out of meds and could not afford to get it (I could tell you a long and boring story about immigration, but life's painful enough as it is, right?), and had to live without it for four years, then as soon as I could, I went to a doc who didn't know a thing about CH or CPH and refused to prescribe indocid and so, well, I gave up on the idea of getting indocid (lazy, lazy me) and I've actually managed to live with the condition medicationless for five years now. It's not so bad, the beast has become a pet, doesn't hurt as it used to but I have frequent and very intense twinges and unvoluntary twitches, though, and my way to cope with those is to swear out loud, so if you spot a queer looking woman swearing at nothing and jerking her head in public, might be me (keeps me from going to church lol). Happens a lot at the supermarket, don't know why, maybe the beast likes to use me to scare gray-haired ladies at the fruit section, one day, one of them old ladies is going to drop dead from a heart attack because of me. Also, at every change of season, I live with shadows and phantoms and everything else but the huge pain itself for from three to eight weeks. When it happens, I get creative, very intense-damned-artist-like, and I feel kinda high when the symptoms subside. When it's worse than usual (and even then, it's not so bad anymore, I used to have it so much worse as a kid), my girlfriend strokes the pain spot and act in a motherly way and if it doesn't get all the symptoms to cease it actually helps going through it and falling asleep, I guess must help release endorphin or something. So I have a question for you all very kind and knowing folks: how come indocid didn't take the shadows and phantoms and twinges away? Isn't it supposed to be 100 percent efficient for CPH? If anyone had the same experience with Indocid, I would be very interested in reading about it.

Thank you for reading it all, take good care, may you have mostly painfree days or if it seems too much too ask, then, I'll just wish you have manageable days.

Title: Re: New here, intro and questions
Post by Margi on Oct 4^th, 2006, 4:56pm

Hi Beta,
Yes, Indocin is supposed to be 100% effective for CPH - it's also a good way to rule out cluster. If it does treat you effectively, then you know you don't have cluster headaches but that you DID have CPH. Not good news for you though, I know. :(

You're in Montreal, I see. We have a Canadian website as well, and we work closely with Brent Lucas from Help for Headaches. He's developed a wonderful guide to finding a good Canadian headache doctor. Here's the link to it:

http://www.clusterheadaches.ca/DesktopDefault.aspx?tabid=105

Just click on Quebec and the listing for the Montreal migraine clinic comes up - they also deal with cluster there. Would you be able to get there to get a good diagnosis and, maybe, get a prescription for oxygen? Oxygen is hugely effective in treating cluster AND blowing away the twinges and the shadows if you do, indeed, have cluster. Where is the location of your pain and how long does your pain last?

Sorry to hear you have to deal with this, Beta. :( We're here to help, though, and we do have sufferers in your area if you need a local shoulder.

Title: Re: New here, intro and questions
Post by v0.1beta on Oct 5^th, 2006, 4:06pm

on 10/04/06 at 16:56:50, Margi wrote:

Just click on Quebec and the listing for the Montreal migraine clinic comes up - they also deal with cluster there. Would you be able to get there to get a good diagnosis and, maybe, get a prescription for oxygen? Oxygen is hugely effective in treating cluster AND blowing away the twinges and the shadows if you do, indeed, have cluster. Where is the location of your pain and how long does your pain last?

Sorry to hear you have to deal with this, Beta. :(

Yes, I've heard about the migraine clinic and a small oxygen and pressure tank clinic has opened a few months ago almost next door, everytime I pass by it (everyday), I feel I should give it a try, also I got my first car this summer, and I don't know if it's a good idea to go on unchecked when I'm on wheels now. So I'll call.

The core of the pain is located on the right side of the head (has switched along the years, also: very rarely but sometimes, it hits me on the forehead, either side), in the parietal area, close to the ear. It doesn't last very long, from a few seconds to a few minutes, but it does come back very fast, as if someone was using a defective jack hammer on my skull. So a especially bad day with pain feels like getting shot in the head from ten to twenty times a day, the strong pain doesn't last, but it sure is intense, startling and it paralyses me for a few secs, and leaves me very tired for a few minutes, sometimes a bit shaken or euphoric or talkative. The shadows (warm uncomfortable sensation of pressure or sometimes warm numbness on the right upper side of my face) is almost always there, but doesn't keep me from doing anything. I also have a strange sensation that a long warm blade is inserted in my brain from the upper right side of the skull to behind my nose, but that doesn't bother me so much because it is not incapacitating in any way.

Thanks for the empathy, but really, no-one has found me banging my head on anything for a few years, now, I can tell you I'm actually glad everytime I realize my ch are not nearly as bad as they used to be and there are more and more days when I'm actually completely painfree. My brother taught me to use the near-painfree days to relax every muscle of my face (he calls it: getting rid of the social mask) when I was a bit younger, and I think it does help taming the beast.

Title: Re: New here, intro and questions
Post by Margi on Oct 5^th, 2006, 4:16pm

I sure would push for a good diagnosis, Beta....doesn't sound like cluster to me (from the location of the pain, the duration, the fact that your headaches are not incapacitating, and the frequency).

You still can get indocin (or indomethacin) in Canada - maybe a doctor at the migraine clinic would let you try it again? If it gave you relief before, maybe it will again - at least I hope so.

Keep us posted as to what you find out, ok? I hope you find relief soon.

Title: Re: New here, intro and questions
Post by v0.1beta on Oct 5^th, 2006, 4:25pm

on 10/05/06 at 16:16:02, Margi wrote:

sure will, give me time, though, I know the waiting list is not short at that clinic.

Title: Re: New here, intro and questions
Post by Margi on Oct 5^th, 2006, 4:49pm

you might try going to a walk-in clinic then and let them know that indo has worked for you in the past. I'm not sure how it is in Quebec but here in Alberta you can get in and out of a walk-in clinic within a couple of hours.

Title: Re: New here, intro and questions
Post by BB on Oct 8^th, 2006, 3:21am

Hi there,

My DH has cluster as well as hemicrania continua, another condition that is responsive to indocid.

At first he was diagnosed only with cluster, but once the cluster side improved with medication, the HC got worse and he got on Indocid. The dose started at 25mg twice a day and was increased slowly over 1 week to 75 mg twice a day. One more week at that dose and all the pain from the HC disappeared.

He then developed some complications and was weaned off Indomethacin in case it was the cause. It wasnt and 3 days after he stopped the med the pain from the HC came back exactly as before. So he started back on the med again and once more after 1 week of 75 mg twice daily that pain is gone.

I wish cluster is that easy to control!

So I suggest you give indomethacin a go, making sure that you reach a high enough dose for it to be therapeutic. The maximum effective dose is around 200 mg per day.

Take care and painfree wishes to you.

Annette