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Carole

New..Desperate..Scared

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Hi I have been a ch sufferer for 30 years. I am lucky enough to be episodic. I am in a cycle now..had a 6 year reprieve. I thought I knew these beasts but they change every time they come back. This past Friday I had one every hour..Saturday I had one last 4 hours.  I am currently without insurance but have borrowed enough $$ to get oxygen. It is not aborting like it did in 2002, my last cycle. The great folks at ch.com have recommended I come here. I have read some and watched a very informative video  about the site and the research. I want to try it but am scared...I in no way shape or form want to be hi. I do however want to stop this excruciating pain. Any advice...support...I would appreciate any and all

Thanx, Carole

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Hi Carole,

No need to be scared or desperate. Easy to say, but trust me, you are in a good place for help and advice.

Someone will be around to help you with getting 02, the cheapest way without insurance. I am not an expert in that area.

I might be an expert on feeling scared and desperate. There is a lot of information here and a bunch of people that understand because we've all been there.

I would like to ease your mind as far as being concerned over getting high. One of the choices you have is using RC seeds. They are a good option and the side effect of being high, really isn't an issue. I have used the seeds many times and had success in controlling the clusters. I did not experiance any high, so to speak.

I just wanted to tell you quickly. So hang in and you will get some help as people read your post.

Meanwhile, you might try some Red Bull to help abort a CH. Or a tsp. of ginger mixed in a glass of warm water. If you have been on CH.com you are probably aware of many tips like that.

Most of all give this a chance. It is the most effective and cheapest way of dealing with clusters.    later Leslie

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Thank you. I don't know anything about getting these seeds and am sure I am not to ask on this site. Oops guess I did indirectly. It does sound like a viable option for me HELP!!!

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Carole:

If you want to stay legal and avoid getting high, rc seeds would be a good choice to abort your current cycle and also as a preventative down the road. But let's get you pf days now. RC seeds are legal so you can ask all you want here. Frankly you can ask anything you want here. If the moderators don't like it they can remove your post, but if you are in pain don't be bashful.

You can buy seeds on line and I know "expensive" is a relative thing but in my mind they are not expensive. About $50 delievered for 500 seeds, way more than you will need. They usually ship the same day. If you order them tomorrow you should have them by the end of the week. There are many strings here about seeds andmany places to by them but this is a link to where I bought my seeds.

http://www.iamshaman.com/eshop/10Browse.asp?Category=Rivea corymbosa.

The Rivea corymbrosa (rc) was recommended to me. I am not sure about the proper dosage for you but you will find it here by the time you have your seeds. I have heard people use a pepper mill to crush them and some make tea with them while others just eat them.

You must detox from any CH meds like Imitrex or Predixone meds for 5 days before you dose or it will not be effective. However if you are on any kind of anti depresent, blood pressure etc., don't stop taking them. They are OK, and it can be dangerous going off suddenly. It is always better to tell your doctor what you plan to do. They will not assist or encourage you, but may be able to assist with meds that might be counter active.

If you are on meds you may have higher pain or more hits during detox. I did not. In fact my pain level has gome way down since detoxing one week ago and going with only oxygen, Red Bull and a teaspoon of ginger powder with about 3 teaspoons of warm water. Tastes nasty but if youuse it like Red Bull, at the very early onset of a hit, it may help. Oxygen is the main abortive and if you are not having success it is probably because you have th wrong set up

O2 Basics you need:

1.  O2 medical or welders tank and refill service.

2.  Regulator that will get you 12 to 15 lpm minimum

3.  OP2timask designed for CH suffers

Studies show you need 12 to 15 lpm to be effective. I am using 25 lpm and aborting in 20 minutes. If you are having 4 or 5 hits a day medical O2 will go fast. I decided to buy two large E size welding tanks for about $40 each and $22 per refill. One tank lasts me about a week, but at 12 to 15 lpm you will use less. You don't need a script for anything listed here. You should order an OP2timask non re-breather mask from the link on this site or ch.com. $29.00 and you will get it in about 3 days. The proper mask and a high flow is absolutely necessary for aborting.

You will need a regulator to go on the tank to regulate flow. This is the one I started which will go to 15 lpm. You may want to start there and many peple have success at that rate. use this link to buy it for $23.39

http://cgi.ebay.com/American-Bantex-H-M-Oxygen-Regulator-0-15-Liters-/260617275970?cmd=ViewItem&pt=LH_DefaultDomain_0&hash=item3cae000a42

Dosing Basics

1. Buiy your seeds

2. Determine dose and recipe

3. dDetox for 5 days

4. Make arrangements to be relaxed with a friednd and no desitractions for 4 or 5 hours after dosing.

5. You will still have a couple of ha after dosing so don't get discouraged.

6. You may dose again after 5 days. Any sooner will have no impact.

7. Read as many posts as you can here to see what others have done. 

OK, that should get you started. Others will chime in but my advice is write out a plan. Do the things you can do today, but you can have all of this within a few days.

Red Bull

ginger powder

order the optimask

buy a regulator

order your welding O2 unless you already have medical  O2

Make sure you are using 12 to 15 lpm.

order your seeds.

Research proper dosing and recipe on this site.

Schedule your first and second (if necessary) doses.

Good luck, keep us postes and keep asking. Many pf hours on on there way. "We" will get you thru this and "you" will own the beast. It will not own you. Jay from Baltimore.

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I hope you don't think we're all running around in a daze. The dose only lasts for a couple hours and most of us only dose a couple times a year. If the seeds don't work, I hope you will consider the other options. If I'm not mistaken, I think the success rate is about 85 to 90%.

I know it's bad right now but, YOU WILL GET THROUGH THIS!!! All of us here literally feel your pain. The advise and support is priceless. Just know we are all here in your darkest hour. We are also here to help you party when you beat the beast!!!   :)

Mad6string

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Carole,

Jay & Leslie both have given good advice.  Listen to them.

Knowledge is power -- use it.  Educate yourself on CH.  Read everything you can.  You can start with the following links (be sure to open each attachment):

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1270936757

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1269811715

Ask all the questions you want.  That's what we are here for -- to give each other answers and support.  :)

bobb

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There you go Carole,

Listen to these people and you are on your way.

                                                           Leslie :)

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I want to try it but am scared...I in no way shape or form want to be hi.   

Hello Carole,

Nothing to be scared of honey.

These Meds we use, have been around a long time before any of today's conventional meds have, & caused far fewer problems. If any at all, when used sensibly.

How many of today's CH Med's cause countless other health problems. Given the industrial strength quantities they are administered in.

RC seeds will not get you high my dear, but there's a pretty good chance they could rid you from the pain of CH.

CArlxx

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Thank you so much every body!!!!!!!!! I didn't get much sleep...the demons were active last night. I will take your advice and order today. I have O2 need to stop and get more tonight. Any advice on dosage for the seeds is appreciated.

God bless you all here and at ch.com don't know what I'd do without you. Carole 

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Any advice on dosage for the seeds is appreciated.

 

Carole,

When your seeds arrive.

Take a pair of flat nosed pliers, & carefully, one at a time, squeeze each seed.

This is just be sure that each seed has some white pulp inside. Any which are hollow, disregard.

I would recommend 30 seeds to begin with.

Once you have squeezed each seed, you now need to grind them into as finer powder as you can.

Some use coffee grinders.

Others use mortise, & pestles, which evers easiest for you.

Once you have a fine powder, this is what I do.

Add the powder to a shot of alcohol, with a squeeze of lemon juice.

Place this in the fridge for 6 hours, during this time, keep giving the mix a stir every once in a while.

Take the mixture on an empty stomach. No food for several hours prior to dosing.

Once you have dosed, it's ok to eat about 45mins after.

Have your 02 to hand, many have increased activity for several days after dosing, so do not be too alarmed if this happens, it can be a good sign that you have stirred things up.

One other important point. You must be detoxed from all other Meds for several days prior to dosing.

Keep us posted, & lets see how you get on.

Walk in the park gal. ;)

CArlxx

 

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Hi all,  Have ordered my seeds. The thought it may intensify my ch scares me to death...for myself and my daughter. She watched me Saturday eve without any O2. My poor baby. She is only 9 and only a toddler my last cycle. Is this the case for everyone?

Are there any other suggestions for ingestion. I believe Carl suggested w/ alcohol can't do that one. Or is there something I can read?? Let me know and again thank you all for being here for me. I will be here for you as well. PF to all Good night

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I am episodic.

Should I maybe wait and see if they go on there own. Reading others experience.....not sure if I want to make it worse. The O2 aborts well don't know how long I can afford it but.....

Carole

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Carole,

I will share my recipe with you.

1st time-- about 20 seeds smashed

               soak in 4 oz of water for 2-12 hours

               splash of lemon

               strain if you like and drink it down.

There are varied opinions on soaking. Also different opinions on length of time and what to soak in. And some drink the sludge and others don't.

There seems to be a lot of ways to prepare. I have soaked seeds for 2 hours and once for a few days, because my plan got screwed up. The effect didn't seem to vary.

I only use lemon water and if you use your imagination, it tastes a little nuttty.

As you experiment, you can adjust amount of seeds and the prep. to suit your own needs.      Leslie

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PS Carole,

A lot of people get post dose hits after dosing. That doesn't mean everyone will have an increase in activity. But most likely you will notice a change. A change is good. Tells you something is going on.

Some people expect no pain after the first dose. It just doesn't work that way for most. It is a good idea to be prepared for an increase. Have your 02, Red Bull, ice, whatever helps you during your hits, close at hand.  Leslie

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Carole, you have come to the right place!  I am a newbie here as well.  I tried seeds for the first time a few weeks ago, a different kind, but thats not important, RC seeds seem to be the better option now that I have researched further.  The people on here are very well informed and super awesome.  The seeds helped me and would probably be even more sucessful if i werent on Prozac.  I detoxed from my Topomax and it didnt get too horrible, you can do it too!  Anyways, I am so glad you ordered seeds!  The seeds lowered the pain level of my CH's.  Hang in there!   

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Oh, and Carole.  My daughter is 14 and its just me and her.  Just like your daughter she has to witness this, I am so sorry.  When a high level attack is over, after I say all the crazy crap, when I am sane again, I reassure her that I will keep fighting so I can be with her.  Havent said any crazy crap for over two weeks now cuz the pain stays around 2 - 4.  There is hope thanks to this message board!

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Hello all. Quick update. My seeds should be here by Friday. I intend to share my plan and experience with all as I can. Today I am exhausted up all night. Took more melatonin as suggested , than I do on a regular basis....resulting in many episodes. I could not wake until the ch was hitting hard by then it takes waaaaay to long for O2 to work.

You all have been great to me I feel supported and cared about. As you all know it is very difficult for the rest of the world to identify. So I'm grateful for CB

Any O2 tips advice experience for a poor woman???

Good night PF prayers to all

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Any O2 tips advice experience for a poor woman???

Carole,

See the "Menu" button at the top left side of this page?  Click on it, then click on "CH.com Oxygen Page."

bobb

PS

The welder's O2 is the only way to go if you don't have insurance.  I've been using it for years now.  If you decide to go that route, let me know and I will give you some pointers.

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Carole, welcome to your second home!  I too have small children and they have seen me at my worst.  It breaks our hearts but they are stronger then we think and the reason we keep fighting.  I am, I hope, on the way out of a terrible cycle and couldn't have made it without the support of these folks.  Keep talking and communicating and give the seeds a chance.  Please let us know how it goes!

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Hi all.........I am now beyond exhaustion..my temper is short and I can cry over the evening news.........

Took the day off tomorrow. Hoped to get my seeds and do them....Maybe tomorrow night.

I have to say..I am really scared, to take the seeds, to have more knowledge about this beast,  to possibly become desperate enough to use illegal substance, to run out of O2..............This sucks!!!!!!! I want to choke the people I work with "hows your migraine" "Did you take some advil" THEY ARE NOT MIGRAINES AND THE LAST TIME I CHECKED ADVIL DID NOT HAVE ANY MORPHINE IN IT..............I know they mean well but.....

God I want to sleep. Four hours would be good. Going through an E tank nightly hitting kip 7 almost every time. I am grateful they're not 9s that's where I was Thurs Fri Sat last week. :'(   I know I'm whining and I know others have it worse........

You all are great...Thanks for being here

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You don't want morphine! That crap will give you an attack like you've never had before! Did you check on the welders oxygen? It's cheap and it works. Also, don't think of it as Illegal drugs. If tylenol was banned in the US and it was the only thing you knew of to stop these attacks, wouldn't you get it. It's just a treatment. If you're careful, there's no problem. It's not like you're going around with a BIG sign on your back saying (I EAT MUSHROOMS FOR MY CLUSTERS). You can be very discreet about it and nobody will ever have to know. It'll be your little secret.  ;)

Mad6string

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Thanks and yes I know that any and all pain killers are useless......Think I tried them all in my teens and 20s.

The welders 02, regulator and mask is going to have to be gradual.. pretty broke and looking at another $60 just to get through my weekend can't do both...

PF thoughts for you,  Carole

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The welders 02, regulator and mask is going to have to be gradual..

Hello Carole,

I'm not trying to scare monger honey, but it's not advisable

to attempt busting without having 02 at your side.

It's your call, but it's not something I would recommend.

CArlxx

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Thanks Carl, I will keep buying medical 02 until I can get the welders. Busting or not I can't go without it.....

Good night last night..I do believe there is a God..4 or 5 ch about every 2 hours not past kip 3 or 4

Slept for 4 hours after the last one. Damn I needed that.

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