spiny

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

Wonderful!!!!! [smiley=tekst-toppie.gif] I am so glad to hear that you are better.

Yes, they can all be idiots. My neuro won't prescribe due to expense he says!!! BS. That is my decision. He is a specialist and worries about toxicity and rebounds. Dumb and refuses to read anything I offer to print out for him. BTW, many cannot get O2 because of Medicare. Can you believe that one????? Yes, you can stay up until 6 and then hit the sack. Likely you will sleep for 2-3 hours and feel like a champ. On the other hand, many say 'Don't nap, it will cause a hit.' Since my hits are at night, the only time I can sleep is 6-8 am and 1-2 pm. If I am lucky and someone does not disturb this schedule, I sort of get by with 2-3 hours of sleep for months. I would try it. Also, I would sleep sitting up in a recliner or resting my head on a table with pillows. It really does help, along with Melatonin (30mg) at night. I still get hit, but not so hard and I do sleep after 6am. Good luck and hope this helps! spiny

Brad, I hope it went well for you, but did you get to bust last night? How are you feeling? Just concerned since you have not posted today. Success to you!!!!! It is a big step, but one that most are thrilled with once they take it. spiny

There ya go. A real life success story right here. Thanks alley, for the update!

shocked, Yes, when anyone speaks to me, the pain ratchets up immediately. I think that it is distraction from facing the pain head-on that causes the spike. If left alone to deal, my focus is totally on the meditation of repetitive movements and a mantra that works for me. Since my attacks are quite long, I have a method that allows me to cope, but not if someone says anything to me. No music, no TV, no convo. Silence alone, thank you.

Perhaps, some day soon, we can have a weather info chart on the board and correlate the new and re-activated members based on the freaking weather fronts. We could become the new bureau of weather and crime predictors!!! Entrepreneurs!!!

Hopefully someone will supply an update. I do know that some who have tried it are still here. Likely works for some though not for enough sufferers to make it a RED flag of success. Besides, what about the ladies??????? Trust me, Progesterone won't stop 'em! >

No problem. My head is in a cosmic universe where expansion is unlimited. Unfortunately, my skull is not and therefore.................. I think I understand what you are saying now.

Testosterone therapy was a hot topic for a while but has vanished lately. Don't know why or the eventual long term outcome for those who tried it.

Ah, noooooooooooooooooo. I writhe like a scalded Python. Not sure that I understand the rest of your post.

Don't know what to do about it. :'( Except, you can always get a betting pool going! You would have a heck of an edge predicting rain. ;D Personally, I don't change altitude. Which means that when in cycle, I don't leave this mountain! It does limit life a bit, but what the heck. Beats getting hit big time coming back home. You could also adjust your maintenance schedule to accommodate those rough times of year. Calm time of year = longer period between vits. Rotten weather = shorter period between vits. Don't think you would regret doing that since you now know another trigger! And yeah, it sucks the big one. >

yep, lower barometric pressure is a big trigger for lots of CHers. You become a weather forecaster! >

martin, I take 10-30mg of Melatonin during high cycle. I also sleep (if it can be called that) in a recliner with added pillows. Prone is a sure hit. At least a little sleep is gained with the recliner. It assures me of a block of 1-2 hours in the morning when the nightly session has run its' course. spiny

Kids use an empty tp roll with a fabric softener sheet held over the end. I don't know if it works, but they think it does. Your room smells like you just dried clothes supposedly.

If you can toss the seeds down, it might help. Some do and some don't. Doing the float test means it doesn't have dead seeds and many say it doesn't taste as bad. I would suspect the diarrhea came from non-viable seeds. Yuck! All the best spiny

SJ, I don't think there is any such thing as being too eager to send the beast straight to hell! With a proper O2 setup with a non-rebreather mask and likely 25LPM regulator, your Dad will have a new best friend! Is he getting any relief from the meds or is he getting the 'It takes time' answer? If he is not getting good to excellent relief, why bother with pharma??? Too many bad side affects in most of that stuff. All the best and he is very lucky to have you looking out for him. spiny

didgens, They won't prescribe Quinine for restless legs anymore, don't know why. BUT, Tonic water contains it. I drink it every day that I can not walk a lot and it stops the leg twitches!!! Otherwise, it is a hot bath and foot stretching exercises in the water. A waste of sleep time. I took GABA over a year ago to test if it would help CH. No go and did not help with other stuff either. I feel your pain on the stinking night sweats!!!! My limited experience with Valium did not help any of it.

I have done some research on Serotonin off and on for a while now. I find it interesting that levels fall during sleep. Also, several symptoms of low Serotonin seem relevant to our condition. Now, symptoms of high Serotonin are experienced when taking vits. What they give you for this uncomfortable condition is a muscle relaxer. So, low Serotonin screws with sleep and mood and eating and digestion. High Serotonin can produce agitation, restlessness, sweating, shivering, twitching, etc. I find it interesting that the anxiety many experience could be produced by the influx of Serotonin. I wish I could cut and paste from Livestrong on this!!! Perhaps someone has more info?????

just my thinking Jeebs, Mr foundation member of the WBPS!!

hammered, Read Hipshot's post on the same thing. There are several good posts there regarding this procedure and outcome.

I just received this today: Dear Cluster Headache Community, I am writing today because we need your help to get BOL-148 developed. After countersigning a $19 million dollar term sheet, our venture capital pulled out because they could not get the big fast exit they wanted and now there is not enough money to advance our development strategy. This was the second time this has happened since we started Entheogen in 2010. In both cases, the retreat of investors did not have any negative bearing on either Entheogen or BOL-148 and in fact they both further validated our mission and resulted instead from their own internal considerations and how the investment fit their unique requirements. In addition to the venture offers, we also have two major pharmaceutical companies interested in partnering to develop BOL-148, but they still require a little additional data before they will commit to an investment. Since receiving the second VC offer, we attracted two successful Life Science veterans with deep experience and understanding of developing Central Nervous System therapeutics and pain analgesics. We are completing a new package for investors with more data, and we are confident that we will get a third funding offer and this time we expect it will close. Despite all the major obstacles that have stood in the path of developing BOL-148, we have been able to overcome them and persevere. Unfortunately we are now at a critical juncture where we have only this last chance and should we fail, BOL-148 will have little prospect of ever becoming an approved medication. A few thousand people from all over the world have registered at our website, and many have expressed an interest in helping us succeed. Thanks to recent changes in US law we are now for the first time able to crowd fund some of our work. Today we launched a 30-day campaign on www.indiegogo.com/projects/hope-to-end-the-horror-of-cluster-headache?c=home to raise $750,000, and we are emailing over 10,000 people for support plus other friends with large social networks to get the word out. None of this money will be used for any salaries, and all of it will go towards new development that includes hiring expert consultants and doing as many of the preclinical studies as we can afford. The work will begin 45-days from today. Your help is critical to this effort. Any financial contribution you can make, regardless of the size, could mean the difference between BOL-148 becoming a medication or not. A large showing of support will encourage others. Spreading the word amongst your own social network will also play a big role and will help the campaign go viral. While we need a considerable sum of money, it is not out of reach and we may even be able to raise more which will allow us to possibly get past filing an Investigational New Drug application with FDA to be cleared for the next human clinical trial. Regardless of whether we raise the full amount or not, any funds will advance BOL-148 and significantly increase the odds of attracting new investment to pay for the large future studies. Indiegogo accepts payments via credit/debit card or Paypal. We greatly appreciate your consideration and thank you for all your support, and together we will succeed in making BOL-148 available for all. Sincerely, The Entheogen Team www.indiegogo.com/projects/hope-to-end-the-horror-of-cluster-headache?c=home   © 2013 Microsoft   Terms   Privacy   Developers   English (United States)  Â

Elly, All the best to you and Jan. May this end his pain and his recovery be uneventful!!! spiny

Hazarding a guess and going with the fact that cold constricts the blood vessels and relieves the pressure on the nerve. But, I am no scientist.