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CrystalR
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I hope things continue to get better for you and it turns out you are at the end of your cycle!

That's awesome that the nurse practitioner was able to diagnose you.

A LOT of us were diagnosed with sinus problems, or, misdiagnosed. Or have sinus problems on top of CH.

Also, I believe it's normal to be afraid it's a brain tumor or something horrible going on and then find out it's CH... The first time I had one, I thought I was having a stroke, or an aneurysm.

Either way, having the O2 on hand will give you peace of mind. You'll have something to combat the CH's the next cycle, and won't have to wait around for medication or to get seeds, etc.

Good luck!

Mystina

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This forum has done alot for my mind set too. I know it's not a disease that will kill ya but it makes you wish you were dead when it hits. Reading some of the stories and how yall are now doing really helps keep me positive. Thanks to whoever built the forum and to those who contribute to it.

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Crystal,

Yes, quitting smoking is a great idea. Loosing weight too.

BUT, they don't make a difference with CH. >:(

What we have is not caused by either. There are plenty here who are WBP - Walking Bean Poles. Trust me, you can be anorexic and not kill the Dragon.

You can quit smoking, will not help. Good advice for general health, but a bitter carrot for Cher's. You do it and still have the beast. 'They' said this would get rid of it. THEY LIED.

Don't forget drinking. If we would all quit drinking, this would go away. Well, many quit TOTALLY when in cycle to no effect. Don't take the carrot.

Also, menopause will not kill it. I am 63, long past the change and mine are WORSE!!

Read up on your Hypothalamus and all it controls. You will be smarter than your Dr's and amazed at the many things you fight day to day that are controlled by this tiny fragment in your brain. CH is most likely caused by this tiny piece of your anatomy.

They will say what they will.  I am 20 pounds underweight. I saw my neuro two weeks ago. He said that 'Once we get you out of this pain, we will deal with that." My neuro prescribed Topamax. He told me to post on line about our other alternatives. Well, I found out Topamax causes weight loss. Meanwhile, I can't do the normal work required for my household. But, this is the drug I am to take to get to where I can eat. Do you see where I am going here? They are STOOPID.

Again, advocate for yourself. Let go of old notions about Dr's and medicine. Take your life into your own hands.

Read about the D3 method. It is located at Clusterheadaches.com, easy to find. Take the vitamins. They may not help with the CH, but you will feel better. You will know that you are doing something to help yourself. You will be empowered. Get your O2. You will feel empowered. Use it properly and kick ass without a pill. :)

I really hope that I did not step on your toes with this Crystal. I have had to jump some pretty HUGE barriers in the last six months, but they get smaller as you go.

All the best to you and yours. Let me know if I have offended you you.

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Actually, I'd say if smoking is making her CH's worse, it's probably a good idea to try to stop at least during an episode.  I'd say the same for anything that makes the headaches worse, though.

Losing weight didn't help my CH either. Honestly, I think they just suggest it in hopes that if you get more healthy over-all the CH will go away. Which is goofy.

And  this disease has killed many sufferers. Not by directly killing them, but by causing them to commit suicide.

Hell, if I hadn't known about ClusterBusters, and it hadn't worked, I'd either be in the mental hospital... Or dead right now. It destroys so many lives. I know for a fact busting has saved my life, and given me quality of life back.

Having a name to go with the condition you have always makes it easier to deal with I find. Once you have a name, you know what to call it. It gives you some power over it.

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Spiny, you didn't offend me. I never even heard of CH till last Wed, so I'm learning here. All information is appreciated. 

Pixie, I hope I didn't offend you or anyone else with what I said about Ch not killing me. I have read that people commit suicide bc of it. I meant no disrespect or anything.

I felt good most of yesterday and then 130 this morning it hit me hard. I made it to the bathroom, vomited, and tried a cold shower. It actually seemed to help some, no instant relief but it did seem ease a little. I went from begging to being able to hang on. level 10 down to an 8. 20 mins later it was gone. I ended up with another one at 4am level 8 the cold shower didnt help. But now I havent had another since. I am just drained this morning.

One of my biggest problems with this is I cant do all the things for my kids I normally did. I missed my son's pinewood derby race over the weekend. He made it to districts and I could barely sit still and watch. More then once I had to get up and go to the car and hide.

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Crystal,

Sorry to hear you're having a bad go of it.  You'll find there are many if not mostly survivors here. 

I'm 100% confident properly following the seeds and/or the Vitamin M path here, your attacks will significantly improve or completely go into temporary remision.! :)  (I only say temporary, since there is no cure)

PFW,

Jeff

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Is it normal to have a decent day to turn around and have the worst attack yet? I'm starting to ease but this one was the worse one yet. It started a little after 1 and is still going just not as bad. Its down to a 7 now. My eye is still pouring and nose wont stop either. I'm hot and cold at the same time.

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Crystal,

I really understand how heartbreaking it is to be in the car in agony while your son is running his race. It can make you feel like a less than supportive Mom. You are NOT! You went, you did your best, and you still got hit. But, you got up and went back to support his efforts as soon as you could right? That makes you an excellent Mom.

Get the O2. Go to the sister site and order the non-rebreather mask. About 28.00. Go online and order a 25LPM regulator, about 55.00. Go to welding supply. Buy a tank, at least 60cf or 90cf of O2. You will pay about 100.00 - 150.00 for the tank. It will cost less than 30.00 to fill it. By purchasing the tank, you can get any supply service to fill it. Renting ties you to one supplier. Either of these tanks will fit in my MX5 passenger seat. They last and are portable, even by me. When you leave home, take the tank with you!!!!!! Get your son to help load it and tell him that by having it you will only miss 5 or 10 minutes of his event. :) He will be happy I suspect.

With the mask, it is available at our sister site Clusterheadaches.com. They know your pain and will ship immediately. With the regulator, make sure one of the ports has a 'barb'. This is where you connect the hose from the mask. You do not need a script for the regulator, but get 25LPM for better relief.

Do not tell the O2 supplier that you are using it for a medical condition. Make something up!!!!! Your husband said to get it so you are there to purchase. As a woman, you won't get many questions, but you will get your tank.

These three purchases will change your life. Your pain will end in 5-10 minutes. You will continue to breath it for the same amount of time it took to kill the Dragon or the same number of breaths. At first, hyperventilate and force all the Co2 out of your lungs. See your lungs as a beach ball. Fill it up, hard and empty it, hard. As the pain lessens, resume normal breathing.

Don't cheat and cut the session short. :o You will most likely pay with another hit in short order.

You are now taking control of this $hit. That is the MOST important thing. It gives you POWER over your life. You will no longer be a the beck and call of the beast.

As for not wanting to talk to anyone,, totally agree. No one around you can possibly understand the torture you are going through. They want to, but there is no way. Even to listen to someone seems to make you focus your brain and that results in more severe pain. Have a 'safe' place to deal with it by yourself. It helps. While my 'safe' place is my bedroom, I would prefer a 'fairy shack' out back with the only key to it tatooed on my arm! 8-) 

The hardest thing is for your loved ones to accept that there is nothing they can do when you are hurting except leave you alone. It leaves them feeling powerless to help and that sucks. Your husband seems to be very supporting from what you have written. Tell him thank you. Let him and the kids know what they can to to help.

Start dinner, feed the dog, give you privacy. Pick wild flowers, whatever. It will make you and them feel better. It took my loving husband years to understand that most supporters feel just the way he does and most suffers react the same way I do. Dan and Nat Geo opened his eyes big time. Now, it was not 'just a horrid headache' nor was I soft with a low tolerance for pain. Something about seeing two grown men, on two different shows, writhing in pain, ripping out their hair and plowing up the carpet with their faces changed his whole outlook.

The big bottom line: Ya got dealt a $hitty hand, there is no cure, you are your own best advocate, researcher, and doctor. You have shown strong character already in taking the positive steps you have already taken. You have courage. You are on the path to the goal line. I am sure that you will not drop the ball. You are setting a wonderful example for your family. 8-)

spiny

who admires you and your hubby

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How many days since you busted? If it is over three and the relief you had is not now so good, you metabolism may be fast and the effect is already wearing off. I would give it another day to see if this is rogue or ramp-up. Then, decide when to hit it again.

Hot and cold: Yep. One side of my head pours sweat and the rest of me freezes. Bet if you check in the mirror under low light you will find that the pupil on the CH side stays constricted even in low light. Kind of weird, but common. Sucks, but your symptoms seem pretty classic.

Keep us posted. Nothing is the same as being able to talk to people who have been where you are right now.

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Tonight I ended up at the ER. I was in tears, couldnt sit, lay down, or even stand. Not matter what i did it was the worst pain Ive ever felt. The dr gave me oxygen immediately, after a few mins they started an IV and ran fluids. Then they gave me (through the IV) a steroid, zofran, and toradol (not sur eon the spelling). After a little bit they gave me by mouth fiorcet. I'm better, but really think it was from the oxygen more then anything. I was already starting to feel an improvement when they ran the meds. They referred me to a neurologist who is a certified headache specialist.

After today's episode, I really understand why people would commit suicide. Ive had complete natural child birth and 2 c-sections, and even multiple miscarriages. None of that compared to what I felt today. Now I am completely wiped out. But I wanted to thank you all for the help. I had to ask for the oxygen, but without you all I wouldnt have known to ask for it. I'm going to bed and I hope and pray the beast lays dormant tonight. Now to start detox all over again though...

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We're here for you Crystal. The O2 setup will definitely help you at home, car etc.  The faster you start the O2 the quicker the attack subsides.  Good to hear the ER actually helped you.  Of all my visits to the ER not once did they actually do something to help. 

PF Wishes my friend,

Jeff

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Crystal, no offense was taken, or meant. I'm sorry if you thought I was offended! I'm not communicating very well lately. I meant that this condition is still very serious, even though it can't kill us directly.

We're all fighters, and every day we stay alive having this disease is another day we've won the battle.

Honestly, if I were you, I would go ahead and order some RC seeds. If your cycle does go ahead and end, you'll have them on hand for next time...

If I had known about RC seeds when my cycle first started, and knew how well they'd work... I would have tried them first before all of the other meds.

I'm glad the ER helped you. I hope that the beast is dormant so that you can get some much needed rest.

Mystina

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That sucks Crystal!

I hope you got a decent nights sleep. That was a really rough night. Hopefully, the Neuro will see you ASAP.

I am really glad you did get to try the O2. It is a miracle in a tank.

All the best and stay in touch. Lots of people on here are pulling for you.

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Just having the O2 did not work at first, then I tried different breathing. I halfassed remembered someone on here saying hyperventilate, so I tried that and in just a few mins I was getting better. After maybe 10 mins more The peircing pain was gone and just my neck was hurting. Thats why she gave me the fiorcet. Last night every muscle in my body felt they ran 20 miles. The dr said I was in so much pain my whole body was tensed.

I was able to sleep last night and woke up at 6 on my own. I packed my kids' lunch, drove my daughter to school, and was able to clean up the house a little. I even have dinner in a crock pot. This is the first day in a week I have been able to function. The beast can kiss my ass!

Thank you all for the support and helping understand this. Without yall and this site I would be lost!

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:D ;D :D ;D ;D AWESOME!!

Yes, hyperventilate while the pain is intense. As it recedes, you can and should resume normal breathing.Focus on your breathing at first: Big exhale - hard, Big inhale. Repeat. It seems to offer the quickest relief for me and some others. You want to get rid of the CO2. The main reason for the 25LPM is to support this type of breathing when your are in extreme pain. If you can't get a script ASAP, go for the welding set-up. Many of us use it. Cheap and no Dr hassle over the 25LPM.

You are doing GREAT Crystal. With the neck pain, which really can make life hell all by itself, perhaps you can get a muscle relaxant for bedtime only. It can help a lot. Also, massage, heat, and finding that stupid 'sweet spot' of comfort. During high cycle, my neck pain is a constant killer: can't look left at all, or up or down. It will not massage out easily either.

One other suggestion. I do not sleep on my CH side when in cycle. It will set one off. I have learned to use the other side or back sleep with the pillow on edge to prevent rolling in my sleep to wake the dragon. Might help. Oh, they tried anti-psychotics for my neck pain. Total waste.

Nothing like an hour of 'getting something done' to brighten your day. May you have many more bright days ahead.

You have a PM. :) Log in and you will see if you have any new messages at the top of the screen where it says 'welcome'.

Oops, I think you found it! 8-)

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Once I tried to hyperventilate, the pain was easing rapidly. I don't know why it even popped into my mind, but I was very very very.... grateful. My husband is working on finding the O2 for me, as well as trying to get the insurance to pay for. The whole day Ive been good, other then my neck feels not 100% yet and the right side of my face is still very hot (feels like a sunburn) while the rest of me is chilly. My eye is starting to look normal and I no longer feel like Im looking slanted out it. All in all its a great day to be alive, Thats a complete turn around from yesterday. Thank god and yall for the O2.

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I wanted to offer this too. If anyone tracks or keeps a diary, my husband (he's very detailed if not anal) is working on an excel spreadsheet for me. My first copy has Date, time, intensity, duration, and a section for notes. Once he's done with it, it will track averges as well as highs and lows, abort techniques with effectiveness, and duration of PF days. he's making it simple for me so I can just select most things from a drop down menu since as you know you can't really function during or even after an attack. I'm hoping after a year or so of tracking the beast I can maybe find an overall pattern and possible triggers. Once the final draft is complete, I can post it or send a copy if anyone wants it.

Speaking of possible triggers...Has anyone had MSG and then had an attack? Last Tues night we had some cheap crappy chinese food that is packed full of MSG, then yesterday afternoon when I had my worst attack by far, I had chinese food that does not advertise MSG free. Once it was brought to my attention, I thought back and there has been a couple places that after eating there I get the attacks, some just a day to maybe 3. I was just always told when I would show up at the dr, it's a sinus infection cause this side or that side is congested and the pain is around your eye.

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Gotta love that 'sinus infection' thing. Had the surgery for it about 15 years ago. Doesn't help. >:( Nor did straightening my septum. GP will always go for the sinus thing, in my experience.

YES!!!!!!!! MSG is a trigger for some. Avoid it like the plague. Or, if you are feeling adventurous, try it again and prove it is a trigger for you. Me. I would 'run away, run away'.

Keep me in mind for the simple chart thing. 8-) Poop, now I will have to get Microsoft Office again. :o

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I've been told for almost 14 yrs now that my headaches were sinus infections, by multiple drs (3 states in 4 years). The one dr who said otherwise just said they were migraines brought on by the stress of being a single parent of 2 toddlers. Same symptoms I have now too.

I am not adventurous, so I will stick to the few asian places Ive ate with no problems. One being PF Changs. Otherwise, you can see my large white behind running away. (Its nice to have a sense of humor today  ;) )

As soon as the hubby gets it completed I'll let you know. It makes him feel helpful and it really is. I like simple so he's making it as easy to use as possible.

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The beast has been good to be so far today, but I'm a level 5 now. I'm trying to chill out and relax but I can't. I thought it was over. I went from feeling like my face was sunburned to my 13 yr old daughter gave me a hug and said dang mom your face feels like the oven. My hands are freezing though. I'm trying to chug water too. Anything that'll help.

Oh yeah, and I have to wait till I see the neurologist now to get a script for the oxygen. The NP and GP said they are going to back off and let the neuro handle it. "It's out of their league" Thanks assholes!

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Jeebs:  8-) 8-)

Crystal: Coffee and Energy drinks (if you can hack them). I bet you will still sleep in 30 minutes or so after slamming one. Take it when the hit STARTS!!!!!! Just like the O2, the sooner you get it the faster you get rid of the dragon. And the lower a Kip you have to deal with. 8-)

See how much better you are this evening? Even after last night? Keep marching and you will WIN. :D

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