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SweetWilliam

New member...overwhelmed

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A very close friend of mine is chronic. I used to think it was cute the way she wrapped her arm around her face when she sleeps. She finally told me why. I want so much to find something to help her. I have been reading this and ch.com for a few days and am overwhelmed at the information available. Having a hard time figuring out where to start with the chronic sufferer. I see so much about breaking the cycle and dont understand what to try first and what expectations should be. She hasnt tried 02 yet. Does it work for chronic? Should I go rite for the shrooms & what kind of relief? Really confused right now. Need some help with a plan.

I am so glad to find this community. Thanks for being here and any help I can give her.

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Welcome SweetWilliam!

You and your friend should start by going to a neurologists and getting diagnosed so you're sure it is cluster headache is what she has and to rule out anything else by getting the typical MRI, EEG scan etc...  If she has clusters, then it's time to read as much as possible on both sites.  Oxygen you'll find is the #1 abortive around here, others will use triptan drugs (I.E. Imitrex nasal spray, injections or tablets). If you choose to bust, triptans along with most of the preventative drugs (Topamax and Verapamil are the most popular) will interfere with the way psilocybin, LSD & LSA work.  Even natural remedies like Melatonin and Kudzu can interfere so it is important you read the front page of clusterbuster.  Your friend will need to decide which rout she wants to do, but first get her diagnosed correctly.

A ton on here and CH.com will be great help.

Best of luck!

Chad

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Hi Sweetwilliam,

Since your friend has a diagnosis, I would definately look into high flow O2 therapy ASAP!!!  It has made a world of difference in the way I view the affliction of CH......I routinely abort hits in 5 to 10 minutes when in cycle!!!

Try to get your friend to come on the board as well.....it will mean a lot to her to find other folks who understand exactly what she has to endure at the hands of the beast!

Dallas Denny

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The 02 advice is huge.  Click on the menu icon to the left and read about 02.   It can be a lifesaver.  Then do some reading of the clusterbuster file forum.  Unbelievable amount of great information.  Take the time to sort it all out,  it can indeed be overwhelming but also life changing.

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Her doc is definitely not an expert in cluster headache treatment.

The clue is that she got amitriptyline instead of oxygen. If she got a cluster diagnosis and scripts more often prescribed for a migraine diagnosis, from the same guy, she should be looking around for a new doc or a headache clinic IMHO.

I'd start with a script for high flow 02 and proper mask set up. That alone might make life easier and provide enough relief to allow her to take her time making the next decisions.

Bob

Bob

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Yep I'll agree that hi flow/non rebreather O2 is something to jump on ASAP.

And you can keep in mind that O2 can be procured without a prescription at a welding supply place (in the US at least), and it's the same stuff that you'd get with a prescription at a medical supplier.

So basically we have O2 for an abortive, and mother nature's clusterbusting plant life for a preventative.

[Disclaimer - I have lots of experience with O2 and zillions of various prescriptions, but am newer to busting, so the following opinion isn't as informed as the preceding ones]:

I generally think of a chronic as being a tough case that needs strong busting - and psilocybin is the strongest natural buster around.

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thanks for the input, I really appreciate it. I read that the amitriptyline is also a antidepressant. Maybe not an all bad thing for her. She dosent talk about this very much so I am getting what I can from her and learning here.

Dr. also gave her fioricet.

We have lots of O2 around for the cutting torches. I need to order a mask today. Our regulators go by pressure, not volume. Can I use them or should I get what you guys use?

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Use the regulator you got on that torch set up.  I'm sure they have HIGH flow rates.  No need to buy the medical ones.  Once you get the breathing down, you'll know where to adjust that regulator.  Just get the Optimask from CH.com store or a non-rebreather mask.

I try to keep that bag almost filled with O2 to the point I hyperventilate.  If it looks like a balloon though, I cut it back on the flow rate.  I only need 15 LPM, but some need a lot more.  You may want to ask more questions about O2 on the other site (CH.com).  Look for a gentleman named "Batch".  He is like a Jedi Master with O2.

All the best!

Chad

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SweetWilliam,

When you find out the flow rate for that regulator, please let me know. I'm looking into getting the welders as well.

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Sweetwilliam Just wanted to welcome you and your s/o to the site. As I'm sure you've recognized already, there is a lot of fantastic people and information. I'm sure she will find comfort here. Not too many out there that really get what we go through. Glad to hear you are getting her some 02 and a good mask. Keep us updated

Pain free wishes and prayers, Carole

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Welcome SW.  I think you are an awsome friend for helping her.  She is lucky to have you!    [smiley=thumbup.gif]   I hope she finds some relief soon. 

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After spending hours reading hear, the other forum and a bunch of links...its still overwhelming ;) I have learned so much and am trying to make enuff sense of it all to come up with a plan of attack. Mask, seeds, spores all on order!  Just spent most of an hour reading about hormone replacement therapy. She needs to go get checked out. I want so much for her to happy again.

The devil is indeed in the details. She is chronic so I am not sure how to relate aborting/busting to that.

Use the O2 whenever she gets a headache?

Dosing with seeds. Start around 40, expect headaches the days after, wait a week to re-dose? I need to get it all figured out so I can present her with a solid plan. Shrooms and LSA seeds are something she's going to have to be convinced of. Shes never smoked a cigarette fer christ sakes! ;D

So glad to have found this place. I have been watching her suffer for a couple of years. She is really bad at going to the Dr like she should and hates taking pills/shots. She is one tuff lady. I am hoping with your experiences I/you can help her.

Thanks, Will

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Use the O2 whenever she gets a headache?

Absolutely!  And hit the o2 at the very first sign of a hit coming on.  The sooner you get to the o2 and the purer it is makes all the difference in aborting an attack.

Dosing with seeds. Start around 40, expect headaches the days after, wait a week to re-dose?

Sounds like a plan to me.  You can actually dose after 5 days.  You need to wait that long to insure that the receptors reopen.

So glad to have found this place. I have been watching her suffer for a couple of years. She is really bad at going to the Dr like she should and hates taking pills/shots. She is one tuff lady. I am hoping with your experiences I/you can help her. 

Sounds like she's a lucky woman to have you in her corner Will!

bb

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Hi :)

Welcome to both :)

This is such a great place!!

And, you are helping her now. See you got advices. After settled and learning how to use o2, it gets better.

She can really get big changes from this treatment, o2 and busting.

Good luck, and all the best wishes from me :)

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I think you've really come to the right place William - she doesn't like to go to doctors or care for the drugs they offer, and there's certainly a real focus here on the non drug approaches.

If you mention to her that the mushrooms and seeds have been used by indigenous peoples for centuries (or thousands of years?), are 100% natural, and are considered non toxic, maybe that will get her attention?

You might add that we've seen severe chronic cases obtain some real relief with mushrooms.

So summarizing your approach like this seems like a reasonable way to focus and simplify it to me:

1) Start right away with O2 for an abortive.

2) Try seeds for a preventative.

3) If the seeds aren't effective, graduate to the mushrooms

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Welcome SW, A great place for her to start is on the CH board. As well as getting a doc that knows CHs. the typical treatment of meds is as an abortive, 02 at 15lpm, this is used at the very onset of the headache. Many of us have been on verapamil as a preventative. and for the stubborn headaches we used the imitrex.

The issues with this regiment is the side effects. this includes rebound headaches and what we call shadows that last for long periods of the day in between the actual cluster headache. These meds left me in a total fog. I often said I would do anything to get rid of these headaches.

It would be great if she dove in and found out about treatments from the CH.com site. the first page has stories that bring tears to first time readers because they have finally found someone that has experienced the excruciating pain that is truly beyond words. I thought I was a freak for walking around the block at 3am in the rain trying to get rid of/deal with my headaches.

It helps to know the signs and symptoms of your friends headaches. when does she get them, how long do they last, what does she do when she gets them.

Has she been introduced to the CH.com board?

For someone that has never smoked a cigarette, she should read, learn and ask questions. Alot of folks start to feel empowered with the knowledge and support they receive here and on the other site.

I have never met or talked to another cluster head until I found these sites, and it has changed my life.

We wish you and yours the best on this journey.

Steve

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Bejeeber has it right...boil it down to a simple plan with dates and then stick to the plan.

1) Start right away with O2 for an abortive.

2) Try seeds for a preventative.

3) If the seeds aren't effective, graduate to the mushrooms

Just go with O2 and seeds or shrooms if you have access to them. Since you have the welding O2 you won't be able to read the flow rate but that's OK you can still adjust it. Start off adjusting the welding regulator at low flow until the bag on the OP2timask is staying pretty full when she is breathing deep cleansing breaths. Breathing should be work! She's trying to get as much O2 into her blood stream as possible, not relax. Fast deep breathing and just regulate the flow to keep up with the bag on the mask. Should abort the Head aches in 5 to 20 minutes.

O2 only aborts HAs. It doesn't prevent the next headache. Busting and doisng mean the sme thing. Using seeds or shrooms to stop the HAs from coming. Many on this board are chronic and are able to stop the HAs with regular dosing plans and then keep them away.

Hope this helps clear the clutter. It's inportant to have a simple plan and have confidence it will work. IT WILL! Jay

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Go with what Bejeeber & jayhedges told you.

I personally used the RC seeds 3 times, and about a month and a half later used 2 doses of LSD and have been painfree since. Never have used O2 as I didn't happen to have any. Used energy drinks instead. They helped a lot, didn't terminate the HAs, but lessened the intensity and shortened the duration. Was able to tough it out.

RC seeds are legal (until you eat them), unlike LSD or psylocibin.

It either works, or it doesn't.

Live free.

Best of luck to your lady.

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Arde, love the fact that getting LSD is no problem in Houston, but you couldn't get welding O2. LOL.

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Oh, I could have got it easy enough. I have an oxy-acetylene rig with an empty O2 tank, and just haven't bothered to refill it. When I need to use the torch, I'll refill, no problem.

Actually, didn't really need O2, as the energy drinks made things tolerable.

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Are you starting to sort things out? Feel more in control?

Absolutely, the medicinal use of psychedelics has been life changing.

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