Cassidy

I have told my doctor/doctors from the beginning what I was using in place of Topamax, triptans, and beta blockers. The usual response has been, " is it working"? Then the questions start. How much? How often? Where did you find out about this? I think any doctor that really cares about you and your pain should be interested. If they aren't happy about you getting some relief from the pain, then it is time to find a new doctor. After all it is your hard earned money, that pays for the doctor's visit. The doctor is employed by you. If the doctor doesn't listen or care then fire him/her. I believe you sign a patients privacy act or something like that, so it's not likely that you will be on the 6 o'clock news, because you take a magic mushroom for an headache. I also feel it is important to spread the word. I know I bore people to death telling them about my clusters and the treatment. It's just so hard to keep quiet about something so exciting.    Leslie

Some things never change. LOL

Tingeling, It is just a bad drug for me. Finally getting it out of my system, and feeling much better. How do I feel? Do you want to come visit for a week? It would take that long to explain. And when I was done explaining, we would have come full circle. People at the grocery store 'round midnight, are much more easy going and the stores aren't crowded. It's kind of fun. Never know who you might meet in the ice cream isle. I've been busting for a long time now. Since this new forum has started, I've decided I have OCD, PTSD, Bi Polar, and manic mood swings. LOL Also I think my ancestors were vampires. Seriously, if I follow my own body clock I would sleep all day and stay up all night. That's the way I feel the best. Often wonder if problems come around when we don't pay attention to our own clock. It just goes back to that hypothalamus thing. There has never been a sun rise that I needed to see. I love the sunsets. Which are quite interesting these days with all the weather fronts and storms. Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Leslie

I totally agree about Apria. I had some lung surgery about 6 years ago and was sent home from the hospital with some O2. The one little tank would have been fine. But then the big machine came, and 3 more tanks. I used the 02 for about 3 days. I requested them to come pick up their equipment and it took two weeks. Then the bills came rolling in. I had no insurance at the time. After many applications for help and begging for a reduction in price, we did get the bill taken care of. I have to wonder how much insurance companies and Medicare are ripped off. I could have had a party with all the 02 I had at my house. A cluster party. Or cluster something. On top of having surgery, dealing with this was so frustrating. The person I dealt with at Apria was insulting and rude. Just my experience. Have to wonder how many very sick old people get taken advantage of. And how much Medicare gets over billed. Leslie

Tingeling, Yes, you are lucky in regards to meds. Both traditional and alternative. My biggest concern over the Nasonex was the scary depression that came with it. It never crossed my mind that would cause depression. And why would it? And in one weeks time. My attempt with Wellbutrin was the same, along with much stomach distress. As far as juices go, I'm just trying to keep lots of fluids in me to avoid CH and to survive our heat wave. For shadows or aborting a CH I use Red Bull (Red Thunder). We are having a terrible summer. So hot and humid. I go grocery shopping around midnight to avoid the bright sun and heavy air. But it could be worse, I could be in cycle or have a broken nose. You be careful, sniffing that fruit. Don't breathe in any contamination. Better yet have some one that you don't like do the sniffing. Â Â Â Â Â Â Â Â Leslie

Yes Tingeling, I guess I am over reacting to everything. I ended up with an earache and sore throat from the Nasonex. And sores in my mouth. Steroid in the nose spray is the cause, I think. When my immune system is down, I tend to get CH. But so far so good. Didn't dose. Just drinking Red Bull, water and juices. My doctor is aware of my clusters and he knows what I use to prevent and/or abort them. I asked about the steroid spray and he didn't think it should cause any problem. Glad he gave me samples because I'd be even more unhappy if I would have paid $60 for the tiny bottle. That would buy more than a carton of cigarettes. And I know if I would quit smoking I might not need any sinus meds. I have been told that if I quit, the clusters could go away. RIGHT!     Leslie

BF, Don't think the sauce is a trigger. Next time add mushrooms and some hot peppers. The peppers will clear your head. Leslie Sorry about the beer. I'm thinking a coffee with Irish Cream would be great right now, but think water is the best bet. Or Red Thunder.

Thanks for the response everyone. I will give the 4Way - name brand a try. And no more sneezing. My tomato garden is plagued with blight. Hate to go out there with the heat and humidity. And blight is a fungus that explodes in the air. Too many triggers out there. My helper is in Minnesota fishing and all I have to do is keep the garden alive. BobW, Thanks for your concern. It's been a tough season. I am worried about Justin, Orlando, Nick, and Joe Nathan. Have to admit my favorite games are with the White Sox and the Tigers. If the Twins stumble, I'll be pulling for CWS. But that isn't going to happen. Go Twins!! Leslie

Tingeling, I'm almost to the point of dosing because of the usual CH signs. Thinking about doing some RC seeds and see if that helps with the sinus and the shadows. Benadryl (antihistamine) was used as an antidepressant at one time. Zantac (for heart burn) is an antihistamine. So, yes you are right these drugs are all intertwined (is that a word) I think long term use can cause problems. A Benadryl now and then doesn't seem to hurt. It does help with sleep. Bobb posted about overuse of drugs and rebound headaches. I think I will taper of everything and try to push the water. Water is just a boring drink. I should have more appreciation for it. I add a teaspoon of real lemon to water and find it good for digestion. I think I just need to stay away from doctors. Every Time I try to improve myself and get a script, I end up with bad side effects. Yes, some of the meds. are special. Leslie

One of my biggest triggers is pollen and fresh mowed grass and dust. OK, that's 3. I know I have to stay on top of the sinus headache otherwise it is cluster time for me. I usually take Benadryl. I felt like I was overdoing, so I tried Clariton, Zertech, Allegra and now Nasonex. Actually my Dr. suggested and wrote scripts for Allegra and Nasonex. What the hell is in this stuff? After one week on Allegra, I was in a very bad mood. Last night was the 7th day for Nasonex, nose spray. I was about ready to jump off a bridge and that would be bad because all of our rivers are overflowing. I am having the same reaction to these newer antihistamines as I do with antidepressants. I mean really sick stomach and severe depression. I post this because I wasn't aware of these side effects and wonder if other folks knew. Also I am trying to flush all the Nasonex out of my system now. Does anyone have any suggestions? I've done the sinus rinses, with saline. I try not to take anything but this is a bad summer. On our faqs info. it is said that antihistamines probably do not interfere with busting. I suspect the newer generation, like Allegra could. The Nasonex has a steroid in it, and I'm thinking that could actually cause a CH. Maybe. I was relieved to read that the meds could cause the depression, because I couldn't figure out what the deal was. Rather scary. These drugs must work on receptors. I think my hypothamus thing must be really screwed up. Glad the Twins are playing tonight, I won't mind being a house plant. Leslie

Linda, Pardon me if I missed something here. I don't believe the original poster meant to cause any dissention. I believe he was posting what he felt, frustration and pain. And we have all been there. Also I'm am proud to be associated with this poster. He was only trying to say there are options. I must of missed the part where anyone here had anything to say about DJ and his work, other than thank you. He is highly respected by everyone that knows of his work. We were having a discussion here. That's what we do. No one has an agenda or wants to ruin what is a lifeline for most members, on both sites. I've read the posts on both sites, and I see support and disagreement on both sites. Guess what I'm getting at is, where is this secret rule book that any of us should be following. You saying someone got their panties in a wad, is about as disrespectful as I have ever seen on this site. But feel free to express yourself, just don't lecture anybody here about respect.    Respectfully yours, Leslie

Lucidity-, Thank you for that information. I believe it would be smart to have a deep respect for 02 tanks and handle with care. In this situation, in regards to clusters, when some may say 02 is their best friend, treat her gentle. Sometimes I feel that is not stressed enough. Leslie

OK, I have a question. The heat index was 110 degrees around here yesterday, before the 85 mph winds blew thru and the lights went out. I saw on the news, can't remember if it was local of national, but someone had an 02 tank in their car. Temp. inside the car went sky high and the tank and car exploded. So what was explosive? The 02? or something else like the pressure of the tank in extreme heat? Or what? I do not want to fight, I just was pondering the cause of the explosion. And what the hell is erudition? So many questions, so late at night. Leslie

I agree--- go for it. Leslie

Daly. Like to get in his pants. ;D But I do get to change my mind later, because I'm a female. That's the new rules. Leslie

Geez David, You are so weird. You forgot the OCD. Hate to admit it but I have wondered the same. Don't remember that ever being brought up. At one time hazel eyes were common. And I have hazel eye color. Also had a nurse tell me that I could not have clusters because only males get them. For what that is worth. Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Leslie

AO, Sorry to hear that you are upset with the sister station. I haven't read your posts over there but I will. Without reading, I can still understand your anger. It is very hard to understand the point of view of some of those members. However, if it wasn't for that board and a guy that posted about the success he had with alternative medicine, a guy named Flash, I would not be here today. So, keep on spreading the word. Someone is always listening. Five years ago the biggest problem was, "it's illegal." Hard to understand how anyone can endure the pain, just to avoid breaking "man's" law. I think I've broken some laws along the way, but I try to use common sense and common decency. I gave up over there because of one insult, but you can still try to help.  Leslie

MattyAA, I did finally get around to listen to the music you posted. I really enjoy stumbling onto something new, or at least new to me. Last night I spent sometime trying to post a few that I like but ran into a brick wall when It came to sending the links. I really did like Kid CuDi Alive and also Nick Kamarera & Deepside. They reminded me a tiny bit of Mind Bomb from a few years back---similar but not the same. And we both seem to be into REM, especially "Losing My Religion." Strange we are so far apart in geography and age, but both choose that song. I had picked out, Talking Heads, "Totally Nude" for DD and Ron. I think David Bryne (spelling) is a genius. Take care and try some stuff     Leslie

MattyAA, Good idea to try for RC or HBWR. All is well here. Just wish for the same for you. Leslie

David, [smiley=sad.gif] Very sad.       Leslie

I am with you MattyAA. We can only hope. But," Hope is as hollow as fear." Somebody smarter than me said that. Leslie

David, Drink the tea, it will ease the pain. It could be worse, like the Twins slump. But there's always tomorrow. 8-) Leslie

I could use some good vibes for the Twins. Leslie

x6th, I am ECH, usually get 2 cycles a year. I went for aprox. ten years without any prescribed medication. When I could not take it anymore I got diagnosed and was prescribed the usual meds. I took them for about one year. The clusters increased in frequency and in pain. Topamax was my breaking point. It worked fine but I got lost taking the garbage out. So, the short answer to your question is, no I do not take Imitrex. I believe I have had success with hallucinogens because I did not use the traditional treatments for very long. Also i was free of those meds. and out of cycle when I started my farm and did the first dose of tea. I have come to accept that the numbness and tingling just are part of the territory, because no medical person can give me any answer. As I get closer to a cycle or a trigger, the numbness gets worse. Just another mystery that goes along with this condition. Â Â Leslie

PS Carole, A lot of people get post dose hits after dosing. That doesn't mean everyone will have an increase in activity. But most likely you will notice a change. A change is good. Tells you something is going on. Some people expect no pain after the first dose. It just doesn't work that way for most. It is a good idea to be prepared for an increase. Have your 02, Red Bull, ice, whatever helps you during your hits, close at hand. Leslie