Stevil Posted February 17, 2011 Share Posted February 17, 2011 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 Quote Link to comment Share on other sites More sharing options...
FRUSTRATED123 Posted February 17, 2011 Share Posted February 17, 2011 hello stevil. i am so sorry you are suffering so much, but i can truly relate with you and am so glad you found this website. the people are so helpful. as far as drs. in the California area, if you go to:www.ouch-us.org/ and click on "Treatment and other information" and scroll down almost to the bottom, you will see "Sufferer Recommended Doctors" and when you bring that up it lists doctors in every state. I hope this helps you. Quote Link to comment Share on other sites More sharing options...
Hipshot Posted February 17, 2011 Share Posted February 17, 2011 Welcome to the group. The first thing you have to do is get high flow oxygen with an Optimask. Go to the menu on the left of the screen and scroll to oxygen page. This is very important. The rest can come later. Dont worry about insurance. The whole set up will set you back less than a hundred dollars. Rent a big tank, get the correct mask and regulator and o2 refills every month or two for $10. A few doses of mushrooms will likely take the pain away by blocking the seratonin receptors. I havent read of anyone having constant cluster headaches all day every day. Whatever the case is, i dont think that the folks prescribing mushrooms to treat headaches centuries ago knew the difference. A headache was a headache and mushrooms were used as a treatment. You have taken the first step by getting on the board and asking questions. read read read. Knowledge is power Dan Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 17, 2011 Share Posted February 17, 2011 Stevil, there are only two good things about this horrible story--but they are very good. The first, and most important, is that you are going to be a whole lot better very soon, if only because of the O2. Then we will share tears of joy with you instead of shedding tears over what you are going through. The second is just a feeling that I have, that somehow your story is going to help thousands or even tens of thousands of other people with cluster headaches get proper treatment. I believe from your passion and your skill as a writer that when you are ready you can tell a story that will get the attention of at least the military medical system. As the folks before me have said, get your O2 set up. Ask questions about that if you have any, and ask about anything else. You'll get answers. We are with you. Quote Link to comment Share on other sites More sharing options...
clustermom13 Posted February 17, 2011 Share Posted February 17, 2011 1. Wonder if you were ever given steroids in your long line of unhelpful meds. Whenever my son has been given steroids to treat his clusters, he gets what they referred to as "status migraine" with cluster. Constant headache, then peaks with his clusters. 3. Have you tried, or can your stomach tolerate energy drinks like Red Bull? Combination of Taurine and Caffeine, very helpful in aborting clusters, along with oxygen of course. 4. IMO, the level of sensitivity to triggers varies from time to time. 5. Either route. Might start with seeds and see how effective they are for you, and move on from there. Everybody is different where treatment and dosage is concerned. We are forced to experiment on ourselves. I skipped a couple because I have no knowledge to help you with them. I know you are anxious to feel better, but take the time you can to absorb as much as you can. It's all here. And someone will come on after me, that will have more to offer you. Welcome home Quote Link to comment Share on other sites More sharing options...
Bonkers Posted February 17, 2011 Share Posted February 17, 2011 Hi Stevil, My 26-year-old son, Michael, also has a constant HA. We've come to the conclusion that he has chronic migraine and chronic CH. He was episodic CH with no migraine until an MVA about 6 years ago turned the CH chronic and brought on the migraine. A 1/2 dose of LSD about 1-1/2 years ago gave him 5 full days of complete relief. A few months later we found ClusterHeadaches.com (http://www.clusterheadaches.com/wwwboard2/index.html) and then this site. The former is devoted more toward traditional (i.e. legal) remedies while this site leans more toward the alternative ones like the psychedelics, both legal and illegal. You'll need to do quite a bit of reading to bring yourself up to speed on the current science of CH. Most of what you'll need to learn you'll find in the ClusterBuster Files you can access via the Forum Jump at the bottom of the page. I'll suggest that you also watch the following video of a talk given by our fearless leader Bob wold: Good luck and welcome to our forum. Ron Quote Link to comment Share on other sites More sharing options...
Stevil Posted February 18, 2011 Author Share Posted February 18, 2011 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 Quote Link to comment Share on other sites More sharing options...
TakinitEZ Posted February 18, 2011 Share Posted February 18, 2011 Hi Stevil, I have constant pain on the same side as my cluster attacks. The ongoing HA actually drags me down at times worse than the attacks only because it doesn't go away. It runs anywhere from a 1-2 to a 5-6 and it seems to change in cycles of a few days at a time. Right now I happen to be in an intense cycle for the last week or so. The biggest problem is that I don't really have a good remedy for it yet. OTC meds don't work. I do take Toradol injections for it, but don't like to and don't get much benefit. Oxygen is not effective for this HA. My neuro at the headache center simply calls it a baseline headache and says it's not that unusual for chronic CH. I also have chronic migraine, but that's a very different headache. -T Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 18, 2011 Share Posted February 18, 2011 Stevil, here are two things you might print out to bring with you to the doc regarding your O2 prescription. Both are from prestigious journals (Journal of the American Medical Association and Headache), and both show that high-flow O2 with a non-rebreather mask is proper treatment for CH. “High-Flow Oxygen for Treatment of Cluster Headache” Journal of the American Medical Association http://jama.ama-assn.org/content/302/22/2451.full “Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey” http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE The JAMA study talks about 12 liters per minute flow, but as you have probably read here, most want at least 15 lpm, and many are using considerably higher flows. As you may also have read here, the most important thing is to get a prescription for the tanks, because once you have the tanks, you can get the rest on a do-it-yourself basis if you have to. Quote Link to comment Share on other sites More sharing options...
Bonkers Posted February 18, 2011 Share Posted February 18, 2011 Stevil, He takes 120mg Methadone/day in 10mg tablets when it's bad. About 60mg when not so bad. Ron Quote Link to comment Share on other sites More sharing options...
tingeling Posted February 18, 2011 Share Posted February 18, 2011 Welcome Stevil I have constant pain on the same side as my cluster attacks. The ongoing HA actually drags me down at times worse than the attacks only because it doesn't go away Agree, i have this as well. Then it spikes up in high kips and contiue that constant pain. It gets you. I remember my first attack, i just got my baby some days ago. I was out walking with my baby alone all of the sudden BAM, i thought i was stabbed in my head by a knife and turned around looking and got more confused. No one there! It hit again and as i felled to the ground, holding one hand on the trolley, i thought "what is this?!" And it went away. Crazy. It had just begun, from this day, everyday 4-9 attacks for the next six years, days and nights... Till i found Clusterbusters and got painfree. I am painfree now most of the time. Life changed since after the first bust. It`s a little over one year now and i have not suffered since. I had some pain but just here and there and not the same way as before. What i do is drink lots of water, eat water ice cream, move allot and get fresh air. Keep bloodsugar stabil, eat what`s best for me and use a spike mat. Some periods i sleep in a more sitting position. List goes on here, so just ask, everybody has they`re own trick in the book. You come to the right place Painfree wishes to you Tingeling Quote Link to comment Share on other sites More sharing options...
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