CrystalR

I'll keep him in my prayers spiny.

After 2 trips to ER, I am pain free. No HAs since Friday morning. I've spent most of the weekend sleeping. I Still feel like I could go back to bed, but at least this morning I have been awake for more then an hour.

On the Ketamine- I'm newly diagnosed with CH, but last year they gave me ketamine at the ER for what I guess now was an attack though at the time they said it was a severe migraine with acute sinusitis. The ketamine didn't touch it even after a second dose. I didn't have the amnesia, or feel euphoric or fall asleep. I was still in pain Level 10 and stayed that way for almost 3 hours. The dr who says ketamine works 100% is wrong. It didn't stop the cycle or even interrupt it. When I was finally released, I was hit again that night as I laid exhausted in my bed. If anything the ketamine made my body even more tired and unable to recover. I have some other experience with Ketamine also. almost 3 yrs ago my son who was 7 at the time suffered 3rd degree full thickness burns to 23% of his body. Ketamine was used daily on him during his treatments. Ketamine did not work for the first 3 days. 75mg of morphine daily did not help him. I have a theory based on what I saw, what I went through, and even what the burn surgeon said... Ketamine will probably work on a reg level 7, maybe 8 pain. I don't think it will touch a Level 9 or 10. It didnt with my son or with me. I think it has to do with our brains being 100% focused on the pain itself and we can't relax enough to allow the meds to work. The surgeon told us with our son the morphine, ketamine, and versaid wouldn't work when our son was spastic. We needed him to try and relax a little and allow the meds to work. I don't mean to step on toes, but 100% of CH sufferers do not get relief, interruptions, abortions, from ketamine. I'm the .01% who didn't

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!

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.

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.

As a new user for the forum and website. I love it! It looks professional, is easy to use, and very imformative to both me as a clusterhead and my family who is skulking around trying to learn for me.

My immediate thought reading your response was KitKat or Twix bars lol

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.

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!

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...

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.

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.

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.

In the course of all this and reading different websites and such, I found out that while the dr was saying it was a problem with my blood sugar, they were CHs. I would check my sugar when I was getting this way before, find it running extremely low sometimes only 40, nothing would bring it up to normal levels. We found an article by a neurologist that says the Chs can cause false readings for BS and BP, as well female hormones if taken at the time of an attack. For me that seems the case too. I guess thats why I have been misdiagnosed for so long.

For me that seems to be the case. I've have times like these before, but never this intense, or long. Usually my HAs come and go for maybe 2-3 days and never got past level 7 for pain wise. When I went to the NP on Wed I thought I was going to find out I had tumors or something else wrong. I was also scared to go in cause I thought she would think I was faking since by the time I got an appt the worse part was over. I only had what yall call the shadow. I had seen our dr before for them and he said it was a problem with my sugar level that was causing the HAs. The NP at least listened did a little research, checked me out and figured it out.

That was the first thing the NP told me I need to do. That's easier said then done for me though. She said weight can be issue too. I've went from 231lbs down to 161, but still need to lose down to 130 to be in my "ideal weight". Does anyone here think weight has anything to do with it? Another question...does stress really trigger them or is it that just another drs like to throw out at ya? The past month has been the least stressful we have had in awhile, but this still hit.

I contacted an "herbalist" near us. The lady said she has worked with a few people before that has CH. She asked me a ton of questions. She said to give her a few days and she will come up with a natural regimen. I'm willing to give anything a try. I will post once she gets back to me. I know there are a few things I have to do on my part too. For one, quit smoking. Ive tried patches, pills, and cold turkey, but I've lasted 9 months at the most.

I actually feel sort of ok today. The shadow isn't as bad. I have drank 3 cups of coffee. My HAs are not as often today. I think I may be coming to the end of this cycle. I went from having 5 a day, to yesterday I only had 3 and they were not as intense. Today I have only had one. I was able to sleep a little better last night too. I think I feel better just reading everyone else's posts too. Its comforting to know there are things I can do to control some of this. I also got in touch with my nurse practitioner and she is getting to work on the insurance for O2. Here's hoping...Thanks everyone for the replies and advice

Ginger is a big remedy in my family. My grandma used it for just about everything. I've never tried the powder but I'm willing to give anything a try at this point. :-/ So mj is like smoking period probably. I'm a smoker and ive noticed smokings makes mine worse. Hot baths seem to make it last longer too. Or maybe it just feels that way. I've taken a to bath twice now while having an attack. Instead of the usual 45-60 min attack, it caused 90+ min attack.

And thank you for responding and listening too.

A friend of mine who suffers from seizures as well as CH and brain tumors does medicinal marijuana. He said it helps to some degree. Has anyone had good results with it here?

Yes I did see the warnings. I haven't taken the maxalt since Wed, the vicodin since Thurs night. Do I need to be off the medrol too?

And also... do all of those help with the shadow headache? Do they make your eye feel like it slants or droops?

I went through the forums and found out how to fix the rc seeds. My husband tracked them down for me. I am getting ready for my first attempt. Is it hard to get the o2 through insurance?