spiny

The most important thing is to get rid of 'headache'. Otherwise, it does not matter, except to us. It cannot be conceived of if you haven't been there. The root canal doesn't hurt, the abscess does. Labor for one is a breeze without meds and almost death to another. Depends on the labor. How do you explain a railroad spike at 1000 deg. temp being pushed thru your brain? Or every nerve lighting up like it was plugged into about 50volts Dc? Ain't going to happen. Yes, it matters to us but I doubt it matters very much to others. And suicide has never entered my mind thru it all. I have loved ones that I will not abandon because of this affliction. Again, just my opinion I know. The best thing that happened around my house was my husband seeing a grown man pushing across the carpet on his face in pain so severe that he could not handle it. Thank God for those videos. That will show a man that a woman is not being a wimp when she is in agony like that, sitting in a scalding hot bath rocking and moaning to herself. He has seen my health go to sheeet from 6-7 month cycles. Just my opinion, I know. But it is what I have learned. My friend with TN understands, but no one else. He has faced the octopus of TN and that is enough to get the picture. Just get rid of the word 'headache'!!!!!!

That is a great find didgens! What an inspiring story!!! spiny

I don't think Xanax would be a problem RR. Many take for anxiety during dosing. Yeah, leave the Vicoden off. Just go to the bottom of the page to 'Forum Jump' go to Clusterbuster files and read 'Playing Well with Others'. It will give you an idea of what is ok and what is not. Good luck!!! Let us know how it goes tomorrow. Ask more questions!

River_Rat, Sounds like a heck of a slap back day to me. Most here would suggest you go again in 5 days. Yes, you can up the dose, say 60-75 next time. Many take seeds at bedtime and go to sleep. Sometimes a little nausea comes with it. Day 2 should be better and then even better on 3 (likely PF ). Some true PF time and then a return of the dragon is common. Therefore, more treatment. The slapbacks normally become easier and fewer as you drive more nails in the coffin. Do you have O2 and energy drinks or coffee? All will help shadows. Eat well and stay Hydrated today as well. Not sure what you are referring to here. Help? As for returning to verap, etc, that is a call only you can make. spiny

Congrats db. Read, read, read now and stay safe. :D 8-) spiny

db, Thanks for checking in!!!!! I am so glad that you are in a better place now. Keep us posted!

didgens, His regular MD can test for vit. D. I garden and spend a lot of time in the sun during the summer. When I had mine tested a few years ago, it was 30 in August - when I was quite tan despite using sunblock often. Just wasn't metabolizing it. Then the expected cycle started. When I went on the D3 I got it up to 101 at 10,000 units/day after several months. I throttled back to 5,000 and am still there.

db, The East Coast is up and praying you are better for some sleep!!!!!! Hoping to hear some good news from you in a few hours. spiny

Hang in there db!!!! Bottom right of page is 'Forum Jump'. Click. Go to 'Playing Well With Others.' That contains the list you need. I know that now is not a good time, but day one is almost done and behind you. Hang on to that thought. That puts you 20% through detox! Migraines are so different while similar. I am at a loss for relief from it. Quiet, dark, prone are all the things I know for migraine. Sorry not to be able to help me. :'( I do wonder if O2 would help. spiny

My reading says it will BLOCK busting. I did not see adverse reaction there. So, it may not work. But it might help. Somebody correct me if I am wrong!!!!!!!

Definitely would go with the SPUT db!!

db, Are you aware that naturals will kill migraine too????? So, what if you actually do detox from the Relpax, go natural and find your migraines are gone too? How would that be for a bonus????

Anytime I can help db. We are all here to help. Just keep talking to us, ok??? They morph, as you know. The O2 delaying the hit just sucks. I know what you mean. Sometimes, even if you do it right and stay on the extra time, the shadow never leaves and the dragon still returns. If not in ten minutes, then five or fifteen. > Jeebs is pretty cool. 8-) all the best! spiny

Dainbread, Many have busted successfully while on Verap. Several take it for high blood pressure so they are stuck with it. There is not an interaction, just blocking for some from my reading. You might try the first bust at your normal dosage since it is giving you relief. Then, after a few days in case of slap backs, drop 60-120mg. Then, go from there. I have been on it and would not drop it all at once. Just my experience. I am sure that one of the guys who is on it will respond when they see this thread. All the best! spiny

Hi Ann, Glad that you found us! I think the worst part of this is the isolation. It is so wonderful that you are here because you will no longer feel isolated. This board is just a few clicks away and that is very helpful many days. As said above, read and learn. It made me feel more in control just to know that I was not being a sissy and others shared my pain and understood it. Just knowing that a cup of coffee would help was a godsend for me. Energy drinks work even better for many. I understand the empty, lonely feeling. It is very hard to take or even understand. But, your were given a devastating diagnosis and no offer of hope. Here, there is success and hope. all the best, spiny

Excellent!! Thanks.

Thanks to all of you for your empathy and support. Now approaching full blown cycle. Hits at 3, 7, and 10 yesterday. Will start work on that really soon as it does not usually ramp up this damn fast. The 10pm hit is the kicker that says get it in gear. Lasted over an hour even with O2 and coffee. Stopped pain meds from surgery yesterday am to prepare. Just going to push the envelope on the 5 day thingy. Can't loose anything by doing that. Todays' second hit started 10 minutes ago. >  ;D ;D ;D Next time I am going to my favorite Vet!!!!!!!!! She is smart and listens well! Off to the O2. Will check back in by Wednesday. spiny

Tony, I read this and think of my CH as being a 30 minute tension headache. I feel blessed. You have done so much for so many in such a short time that I think of you as being three people rolled into one who works 24/7 for the community. You make the world a better place. To Cindy, you are amazing. Google did save my life, but it came late to the party. Your analogy is so on target. I look forward to the thread about your neuro. As you stated, the isolation phase is the most horrible part of this condition. spiny

Jeebs, weatherman, You guys are awesome. Hopefully I won't be back online tonight. Big deep breath! 8-)

Congrats on the great run of PF time! 8-) And yep, just ask a kid who skinned his knee what the worst pain in the world is and they will tell you 'my skinned knee'. Everything is relevant to personal experience. My son thought migraines were the worst till he picked up the ice picks last year. A six minute ice pick sure changed his perception of pain. Hugs!

Well, apparently I am screwed. Hit yesterday afternoon. Killed with coffee and O2. Laid down for a while this afternoon to lessen the pain from surgery. Dosed off and woke up to a ramping up BEAST in my head. Not a knock knock, anybody home hello rogue either. Coffee and lots of O2 and here I sit. My body is shaking all over and the shadow remains. Really looking forward to going off my mountain on Tuesday - NOT!! :'(

I wish that I had had this fact sheet at the hospital last week. Not that anyone would have taken the time to read it!!!! But, now I have it for future use. Thank you! spiny

Well, here is the bad news. One low kip yesterday and two waker uppers tonight. Sitting here drinking coffee at 2am. I have never had a summer cycle. > Perhaps it is because they pumped me full of Co2 for Laproscopic surgery. Yesterday, my waist was 10 inches larger than normal from the shit. That hurts!!! At least it has traveled down from my lungs so that I can draw a full breath now. Still can't hyperventilate yet though. Let them keep their Co2 and revert to the old knife for me. Yeah, it is faster for them, but they pump ya with Co2 and run their tools all around under the muscles looking for holes to patch. That leaves you so sore that you can't cough or sneeze without curling into a ball of pain. "The pain will be gone in three days, don't worry!" I threw their Oxy down the toilet. Told them I could not take that shit. Spent last night puking from it!!! > I was totally prepared for this too. They just treated me like a ditzy woman who knew jack about anything. After all, they are the DOCTORS. I am just a little old lady who is addicted to coffee and O2. :'(

That is from the Horners that comes with the CH. Weepy eye and constricted pupil. Check it out under low light, it will not dilate properly in low light. Therefore the blurry vision. Mostly will clear up ooc, but may not attain the same size of the other pupil again. High cycle, my CH eye only dilates about 1/2 of what the other eye does. Success is wonderful!

Well, I had put off minor surgery for 5 years due to CH. Since I have been PF for over a year, it was time to get it done. Beginning of June I start with the surgeon who did a hernia repair 20 years ago. Travel 100 miles to the appointment. He is nice (our kids were classmates years ago) and remembered my kids. He had purged his files and so had the hospital. Still , he says sure, lets do it. First available is in two weeks. Great!! The morning when I am dressing to go down for my pre-op, I get a call from Dr's office cancelling my surgery. He is moving his practice and won't be available at that time. OK, I will wait, when can he do it then? Sorry, he is closing his practice!! He is mid 55's. I call back the next week and ask for a referral to someone he trusts. A week later I have the appointment schedule. Meet the dr and set up the surgery date. July 17th with pre-op on the 16th. I can't do a phone check in due to CH and have to get with the pre-op nurse about anesthesia and meet the anesthesiologist. Turns out that I am only meeting with the nurse. He tells me the anesthesiologist will talk to me on the day of surgery. That was a waste of money and time! > My 'early' surgery time is 10:20!!! No food or water after midnight, even though the surgery is after 10. Actually, according to past ops, I know the midnight cut off is for 6am surgery. Nurse says, "Oh no!!! Nothing after midnight. Be at the clinic at 8:45. Not off to a happy start. So, I have my CH coffee at midnight and hope for the best. At the hospital, doc is upset at the short list of pain meds that I can take. Mainly, no codeine or tylenol can be tolerated. Tylenol is in everything now. So, his attitude is I will see what I can do. Next is the anesthesia dept head. Nope, never got sick or a problem with a general. Great. Next, since he runs the meds in recovery, I explain my CH and need for 15-25LPM of O2 if I get an attack post surgery. 'We don't have that!!!!' 'NO' Sir, a cannula won't work and neither will a concentrator. 'I well see what we can do.' 'Do you put caffeine in the IV or would you please?'Glare from him. 'No can't and won't' He stalks out. At 10:00 I start a hit. Think, think. Should be able to get thru till they put me under in 10-15 mintes. Hang in and rub the noggin. At 10:20 two OR nurses poke their collective heads in the door and say that they are and hour behind' I tell them I need caffeine immediately because I am getting an attack and if they don't want to treat me for a concussion from banging my head on their wall. They vanish. Ten minutes later I am shaking all over and my daughter heads to the nurses desk to work on the caffeine issue. Either in pill or even better in the IV they have running already. Twenty minutes later they show up with 2 caffeine pills. Then, a strange nurse comes in and starts to hand me a cannula. Again, I explain, rather erratically now due to Kip6-7 that it will NOT work as I told the head of anesthesia at 9:00am. She heads for a concentrator. 'Don't bother, I need pure high flow O2. I have my own mask. You can't bring your tank into the hospital. > She leaves and I have some relief from the caffeine. At 11:00 the anesthesia nurse pops in with a pre-op. shot. It really helps. she says she will be back in 10 minute to take me back to OR. At 12:20, we head out. Iv addition is fading ( never fell asleep or got silly on it), so I am talking away until they add more meds. Husband gets a call shortly after 1 and I am headed to recovery and should be back in my room in 1 to 1.5 hours. At two hours, my husband went looking for answers about where I am and what is the hold up. No answer from anyone. No one seems to know where they put me. Hubby catches the head of anesthesia. I appears the the nurse OD'd 3-5 patients via their IV. Gave everyone enough for for 3-5 hours of surgery not 1!!!! They got the others revived and awake but were having trouble with me. He had been at my side for over 2 hours trying to wake me up. Had been giving me meds thru a separate shunt and vapor set up. Being 110 instead of 200-300lbs made it more difficult. DUH!!! Then, he got past his fury about the screw up and tried to back pedal from what he said. They brought me back to my room at 5:30 and I still was talking gibberish and some guy was leaning over me yelling at me to talk to him. Family had been sent out of the room. I told the guy veerrrry slowllyy that talking was difficult and stop yelling. Then, they let my husband back in the room. I had had no pain relief since surgery and asked for a shot. Nurse informed me that they did not supply shots for pain relief and were trying to track down a pill for me!!!!! At seven pm they show up with one 10 Oxycodone! They said that it I did not throw it up they could actually give me another!!!!! No pain relief. At 8pm they bring me the other pill. "Let me go home!!!" No, we can't because they can't find a pharmacy that carries the prescription med needed to take home Mepergan Forte (sp). I suggested they just get the Demerol and anti-nausea separately. Nope. And, they had to wait for my surgeon to call them and ok something else!!!!! So, a surgery that was to last 3-4 hours before discharge lasted past 12 hours. They put me on a pill that I refused before because of the addiction potential, gave me no pain relief while I waited for them to fix their screw up and damn near died. Idiots wanted to keep me over night and my husband told them not on your life considering what they had already done to me. Did I get a call today to see how I was feeling? Nope. Was I given a follow up appointment? Nope. Told to call them Did I go prepared to best of my ability? Yep. Did they screw that up and call it migraine????? YESSSSSS. I suggest that caffeine pills be bought before surgery and taken the morning of surgery. It would have helped, but I did not know such a thing existed. Bet I get charged 80.00 for them to bring them to me. I demanded a detailed hospital bill before payment would me made. I will not pay for all the extra recovery charges and meds that they had to give me to save my life from their screw up!! Yes, it is a rant. :-[ But, it is an example how dangerous hospitals and arrogant people can be. spinyÂ