Stevil

Also forgot to mention that I already received 2 O2ptimasks and recently ordered high flow (25+ lpm) regulators for both styles of tanks. Yes, I had faith that I would get a prescription for oxygen, one way or another. Stevil

Great News All....I GOT MY OXYGEN TODAY!! ;D After being turned down by Tricare to go see either of the HA specialists in my area, (because they were not on Tricares approved doctor list) I had one more place to try before paying out of pocket to go see one of the specialists, my Pain Management Doctor. Thanks to this site, CH.com and ALL OF YOU, I was prepared this time to do battle with yet another doctor. I had my regular appointment with my pain management doctor today.This time I came armed with a printout of every artical on Clusters and oxygen use I could find on ClusterBusters and CH.com's site. When the time came I asked how much he knew about Cluster headaches and treatment, he replied, he knew some about it but not much about treatment. So I pulled out all my printouts and we talked about them in great detail. He was amazed that he had never heard of oxygen as a treatment, and he even went and grabbed the other doctor on duty and asked him the same thing, again, new very little about CH's and nothing about oxygen. After reading the printouts both of the doctors were very receptive to prescribing me the oxygen stating that because I have been dealing with this for some time and because I had obviously done my homework, they were willing to do it. I had also printed out the instructions on the proper wording of the prescription, and he wrote it out verbatim. The doctor even asked if he could make copies of all the printouts that I had brought so he could do more research, I just gave him everything that I had brought. Before I left I stated that hopefully they would do the research about CH's and learn about treatment options, but more importantly they would prescribe oxygen first and foremost to anyone else suffering from this beast. They replied that I am the first patient they have seen that has CH's and that they would indeed learn more about it. I think its safe to say "WE" taught a couple of doctors something new today that might benefit more people in the future. Another good thing that happened today was when I went to the medical supply store to get the oxygen, the gentlemen who was helping me with all the paperwork told me that he knew someone who suffers from CH's and then asked me what "I Wanted" as far as what and how many tanks, masks and regulators I needed. He hooked me up with 2 "E" tanks for the car and work and a "H" tank for home, as well as high flow regulators and 3 non-rebreather masks. What was really cool was when he told me that they are normally in my area of where I live only on Wednesdays, but he said that I "NEED" the "H" tank right away and he would deliver it today. And he did! He showed up at my house not even an hour after I got home. (I am 50 miles away from where they are located) Now that is someone who cares and wants to take care of their customers needs. Also found out that Tricare will cover all of the oxygen costs. So THANK YOU Clusterbusters and all you incredible people for your support and information. I would not have found out about oxygen or how to go about getting it without all of you. THANK YOU from the bottom of my heart, you have given me what I really needed....HOPE and STRENGTH for a better outlook on life. Finally there is a glimmer of light at the end of the tunnel of despair. And I know that I am not going through this alone. THANK YOU THANK YOU THANK YOU! Stevil

All, Thank you for the words of encouragement and support. The o2 is the first priority on my list, I see my doc tomorrow and I going to beg for a script for o2, if I don't get it I will just do it on my own (doc's be damned). Also going to see about adjusting the varap dose. clustermom, yes, I have had numerous steroid shots, but only in the last 7 yrs. My "daily" has been around a lot longer than that and I have been racking my brain trying to figure out what could have caused these. (I did have a head trauma to left/back of my head when I was child, these did not appear until I was in my mid 20's) yes, I can tolerate the likes of Redbull and such.In fact I do one every morning before work and it seems to take some of the top off of my "daily HA", will repeat if "It" starts to peak (don't want to call it a shadow, cause' I don't know if these are CH's or not) Bonkers, I feel Michael's pain, I was hoping that my story would find someone that might be in the same boat so I could gain some knowledge from them (not that anyone should be on this boat) What do you do for the "daily" HA, to keep it under some kind of control? Thanks in advance for any advice. Stevil

Hello All, First I will tell my situation and then ask some questions. SORRY...This might get a little long but I really need to explain some things first. (probably nothing new to anyone) I have had a headache on the left side of my head everyday for the past 20+ yrs (so long I can't remember when they started) it is always there from the time I awake to the time I go to bed. During the day the level of pain would increase several times a day from a constant 2 to a 5/6 on a normal day, other days would ramp to what I thought then was a 9/10. Nighttime would be fitful sleep because it would spike and wake me up, several times a night. I remember pounding on the back of my head and neck (didn't know what it would accomplish at the time I just wanted the damn thing to go away) I have gone to every type of doctor and had just about every "treatment" they could come up with, most docs just look at you funny when you try to explain exactly what you’re going through. And it has always been the same treatment...muscle relaxers, some nerve meds, massage therapy, bio-feedback therapy, blah, blah, blah! NOT MUCH OF ANYTHING. (Suffer in silence) I should mention that this whole battle has been with military docs, and getting them to treat you for something they don't understand or comprehend is like trying to walk through walls...impossible! Well something changed 7 yrs ago (this month in fact), after eating dinner and sitting watching some TV, I felt one ramping up quickly and went to the most explosive pain I have ever had in my life (a spike being driven into the side of my head) you all know what comes next...on the floor holding my head and involuntarily screaming...OH MY GOD...WHAT THE HELL IS THIS...AM I DYING...it’s not going away, I crawl to the only place I know to go...my dark, quite bedroom..Crawl into bed crying from the pain, doesn't matter how I lay I cannot seem to get comfortable, toss and turn, bury my head into my pillow and scream. My wife is freaking out because she does not know what to do for me, I am yelling at her to leave me alone, don't touch me, and just let me die. This goes on for 2 1/2 hrs and it finally subsides and I fall into bed exhausted and sleep. Again, you all know what come next; it repeats the next night, the next night, so on and so on, for 18 nights in a row. Now I know what a REAL 10 HA IS! 4 trips to the ER (45 minutes away), same results as always, they are shocked (or think you’re a junkie) because a shot of morphine or demerol won't touch the pain. During this I did get in the see my primary doc and told them what was happening, all they did was prescribe something off the wall and tell me if it happens again tonight come back and we will try something else, well, it did, I did go back and got something else useless (they didn't have a clue as what to do), it did however get me my first referral to a neuro doc (what I wanted a long time ago) we all know the outcome of that...nothing. He said it was a occipital nerve thing and wanted to start me on nerve blocks, so I go that route...no help. At the end he was stuck on wanting to severe the occipital nerve (after much research and reading I told him to bite a wall) no more help from him. Go back to my primary to get a referral to a different neuro that took nearly a year (and 2 more, 2+ week episodes) to justify. In the meantime my doc was trying a different number of med cocktails to get a handle on this thing...no help. Anyway, it took seeing 2 more neuro's and a HA specialist, for the third one to diagnose me with CH. So a regimen of different meds to no avail and continuing to get 2 week+ episodes in the mean time before one of the docs put me on varapamil ( I was already taking meds for high BP and they just replaced one of the meds with varapamil) before I saw a decrease in the episodes, down to just once a year, instead of 2 -4 times a year. In this time period they also sent me to a pain management doc and that is when they started doing the block injections into the neck along the spinal cord w/ x-ray and more occipital blocks into the side of my head. Also a cocktail of opiates to help with the pain. They only mask the pain not take it away. (Now they want to do high voltage nerve "burning") I also spent an ungodly amount of money for Botox injections that did nothing but make me have young looking skin. I have been to more "specialists" that don't seem to have a clue of how to treat CH. 3 years ago I had a break in the episodes for 2 yrs until just this month it came back full force for 2+ weeks. It was then that I found this site by accident (I can't believe that all those years of doing research for info I never came across this site) anyway, now that I have rambled on about my past I can pose some questions. 1. Does anyone have the same thing or insight on having (let’s call it a normal HA) everyday that will vary in pain level throughout the day and night but will still get or have got a CH episode at regular intervals? (I hope I am asking this right because I don't know how else to put it, from my reading of these posts I can't tell if other CH’ers have a HA every day, all day or they are PF until the demon strikes)I don’t know if it has been CH the whole time, or a different form of HA that developed into CH, or I am dealing with 2 types of HA’s? 2. After finding this site my eyes have been opened to so many things. With all the docs and specialists I have seen about CH….NOT ONE OF THEM HAS EVER MENTIONED o2 AS A TREATMENT. Sorry, not yelling at anyone...just confused on how this could have happened. I know I am limited to the number of HA docs I can go to because of the military insurance referral system (if they are not in our "zone or region") we cannot go to them. I wonder if this is the case. I am in southern California (north LA area). Does anyone know of a HA doc that I can refer to by name that is in this area and has a clue on CH treatment? (Chances are I will have to do the o2 thing on my own) 3. After reading about doing the caffeine thing, does anyone know if you can get caffeine in a tablet or liquid? After years of slamming Excedrin I developed two bleeding ulcers, so I have to watch what I ingest. Coffee is out (too acidic), so looking for an alternative. 4. Is it typical with CH’ers for their triggers to change or develop over time? For instance, in the past I had no issues with alcohol, until a year and a half ago it became a trigger. Now any type of alcohol will trigger the beast. 5. Because I have a HA everyday that ramps up and down all the time, I was wondering if going the RC seed or ‘shroom route would be beneficial to me….Any thoughts? 6. Right now I am on 240mg of varapamil and 60mg of zestril and BP is under control but HA still spikes, anyone else with high BP that has been on the same meds and had the varap increased with no drastic drop in BP? Again, doc’s don’t seem to have a clue on how to deal with CH. (maybe if I find the right doc, this will change) Thanks everyone for reading, I look forward to your replies. Stevil