mikesal Posted October 17, 2012 Share Posted October 17, 2012 Dear Fellow Cluster Heads: After living with the beast, I take this seriously. My writing this piece is long, but in my world it’s worth it. I need to share what I learned with those in pain. I begin by sharing that I am a chronic CH. It's been 8 years since diagnosed. Several weeks before I started getting headaches I fell on my bike, it probably would have been worse had I not been wearing a helmet. I knew something was wrong when Tylenol was ineffective. I was in denial and tried to blow it off until the pain didn't stop. I thought I had a brain tumor or something. Over 8 years I weaned off all prescription meds several times that were preventatives which had nothing to do with preventing my headaches. All stealing my quality of life one pill or shot at time, masking the cause and the reason for my pain. I took Verapamil, Lithium, Elavil, Effexor, Prendadolol, Imitrex, Sancert, including busting. I tried Atlas, acupuncture, surgery, O2. I’m sure I forgot a few. From busting I found Sancert. A drug (methysergide maleate, contains LSD) specifically manufactured for throbbing / vascular headaches like cluster, and migraine. That’s why Cluster Busters is on point with the value of busting. Had it not been for that web-site I probably would never have gotten to the place I am today. I took Sancert until I couldn't take the side-effects anymore. Sancert has side-effects and possible issues with several forms of fibrosis. Any word in the medical world that ends in (osis) can’t be a good thing. That’s why you take it for 6 months and then take a holiday for a month and use prednisone before starting Sancert again. Pretty scary stuff in my world, but sometimes you do things to feel better, and not necessarily to get better. After Sancert I went back on prednisone for relief and peace even if it was for one day. Even prednisone has its own issues. It leaches calcium from bones and has other side effects. Headaches are headaches. Let’s not kid ourselves. Pain is pain. I don’t care if the headache is a cluster, migraine, or tension related. There is an underlining cause for the headache. Having headaches may be hereditary, self-inflicted, diet, or caused by some other type of trauma to the body. What I'm going to share is my story, my journey and quest to feel well. I wanted to be happy and have hope my life would be more than just struggling every day. I always thought about what happens when medications and O2 aren't as effective or I need to increase dosages to deal with my CH. When will I hit a wall? Am I shortening my life expectancy? A friend who witnessed a CH attack suggested I visit someone she knew. I said yes, and met this individual. As I'm sitting there he starts asking me questions about any trauma I experienced, family history regarding health (cancer, diabetes) my diet. He knew nothing about me, my journey, my life, and my circumstances. He heard of CH, but CH are a minority, not the majority in the world of headaches. When I left my brain was on overload, my wallet a little shorter, and I had supplements out the wazoo. We discussed what I eat and put a small plan in place regarding my dietary intake. Nothing really changed over the next few weeks. Headaches came and went like before. Another dead end I thought. I started avoiding certain foods and ended up hungry and scared shitless to eat anything. This made my headaches worse following a blood-type diet plan. If what I share helps one person have one less headache I'm all in. If what I share makes a difference in your life I'm all in. I don't need anyone to believe what I believe, or agree with my story. I'm living it every day. I know the beast, I know my journey. I don't know yours, but I do know mine. I learned the cause is the cause, and a trigger is a trigger. There is a difference regarding the two. I've always believed my headaches were histamine or allergy related due to the watery eye and stuffy nose. Every Neurologist I've seen (4 over 8 years) and everything I've read resonated with no answer on what causes the headaches. Cluster headaches seem not to get much attention since it is a small percentage affected. Quite sad when it's been stated that a CH is the worst type of headache known to man compared to any other type of headache we know. Ninety percent of CH suffers are males. I always wondered why. I also thought about the average age. Did we all bang our heads or experience some type of brain trauma? What links us all together? Do we all smoke, get high, drink, and share similar habits that link us together. Is it occupational? What do males have in common? I'm a technical thinker. I research everything and anything. I started thinking about when I was a kid. Dinner was on the table. Rarely did we eat fast food. Over my life time we've been bombarded with processed foods that weren't part of our diet when we were kids. Think about all the kids over the last 10 years who are overweight, have high BP, diabetes, ADHD, and other types of illnesses. How did this happen? Was it video games, lack of exercise, or maybe what parents were letting them eat? Red dye this, red dye that. All the crap we feed them has to have an affect over time. Back when I was a kid if you demonstrated any type of wacky behavior you got your ass whipped. Today they give kids Ritalin to take the edge off. What Doctors are doing is changing the chemical balance of their brains to take the edge off. This a very sad. Remember I shared my head injury when I was 45. What if the damage I caused by banging my head created symptoms that took years to manifest. Remember I shared earlier that no one knows what causes CH. Sure they can treat it, but there is no definitive treatment plan. Everyone is different regarding their body's response. Research provides some insight regarding causes. Causes might be the hypothalamus gland, night shift work, sleeping pattern/cycles, but the medical field still doesn’t know yet how to fix these headaches. I believe it and I've said it all along... If the body can heal itself, it will. It took years for this issue to manifest; it will take time to heal. The key is to eliminate or heal the cause, and let the body return to homeostasis. In my case it was the level of Tyramine I was ingesting which was a headache trigger based on my cause. The head trauma damage exasperated my overall poor diet over the years. I’m open-minded about many things. But this Tyramine thing blew me away. Bullshit I thought. I’m telling you not to discount Tyramine as a potential issue in your life. Granted I’m no medical doctor, but I’m the one living with the pain and headaches every day. Tyramine is not exclusive to just migraine headaches. If you hear this, that’s’ bullshit. Remember pain is pain. While headache types may be different why did I have features of a cluster headache when I ingested foods high in Tyramine? That question may never be answered, and I really don’t care since the changes I’ve made have improved my quality of life ten-fold. Tyramine is also not an allergy, but acts like one based on what happens to trigger a headache. Its trial and error at times and I have caused my headaches based on foods I've eaten. The sweet part is that food item goes on the "Avoid List" and you move on. It's a moving target that never stands still. I call cluster headaches the gift that keeps on giving. Why, because there was no end in sight. It became such a part of my life I don’t know who was in charge, me or my headaches. We all know what triggers we're told to avoid... Alcohol, chocolate, nitrates, the list goes on. But lentils, red plums, broccoli... Come on, I've been eating those things for years. Maybe I'll be able to eat those foods down the road, but at this time I do not. Without being on any medication I know within 15 minutes if what I ate is safe or not. It's like being a human Ginny pig. The headaches haven't gone away, but I no longer have the excruciating pain like before. I don’t pace anymore, I can be still now. The headaches are less frequent and less painful as I find what works and what doesn't regarding the foods I eat. Like I said, sort of a moving target, but worth it. Why is it worth it? Every time I have a headache I learn something new about my situation, and the results are so positive it drives me forward with the hope of being able to manage my headaches better and improve the quality of my life. I've been unemployed for over 5 years with a quality of life in the toilet. Afraid to go out, or be in a relationship because the headaches defined my life. Before the headaches I had it all. All being relative to the individual. I was active, and the quality of life was good. A-plus paper, sweet job, a home. Today I'm homeless. Sold everything I owned to pay bills over the years. My credit is shit, which is now a challenge when I apply for employment. Even family were mean. How come you can't get a job? Why are you so lazy? Unless you're in someone's shoes shut the F up. Presumptuous people have no place in my world. Even my own mother told me to go F myself because she felt I was taking advantage of her. Who can hold a job and be productive long term with CH? People think you’re on vacation or retired, when all I wanted was a life free from pain. It will hurt along the way as you tackle this, so have hope and resolve to win the battle. It's a fight to improve the quality of your life. So, be well armed with information for the battle. Knowledge is power. Use this power to take control over your circumstances in spite of the pain, and improve your life to the best you can. Don't buy into the medical chatter; challenge those who are more interested in dispensing meds and saying this is your life. It is no life. Get a nutritionist on board, take charge with your care. What's the worst thing that could happen? You might experience a break- through in managing your headaches that you didn't have before. Take supplements that break the brain-blood barrier. Get a GRP blood panel to check for issues with inflammation. You need to chip away at this. It will take months, and it will be painful at times, but think about it. You might be in pain now so what do you have to lose. I'm not saying my situation is yours, or what works for me will work for you. Your issue may not be mine, your cause might be different, and you may not respond the way I did. I needed to get off all meds to be at a point where there was some clarity and opportunity to focus on variables I never considered before. I've had more headache free days over the last several months than over 8 years. This is no fluke regarding what I share. If I eat something that is high is Tyramine I get my CH features. No matter what you believe about what I wrote know that I am here for you. I'm here to provide every bit of my trial and error, every piece of info that made a difference in my trying to improve my life. Don't reinvent the wheel, but use me as you need too. I will be here as your coach, I will never give up on you. Remember I am not telling anyone to stop whatever treatment works for you. Continue to do what works for you. Use what I wrote as another way to look at how someone found answers. As Jimmy V said “Don’t give up, don't ever give up". With the help of God, and true friends I've come to realize I still have two strong legs and wings to fly. Gregg Allman If what I wrote made you think, not only about your own circumstances but what I’ve accomplished I did my job. I welcome any and all feedback. Be well, and may God Bless you as find ways to deal with your pain, and the pain of those you love. Warm Regards, Mike Quote Link to comment Share on other sites More sharing options...
spiny Posted October 17, 2012 Share Posted October 17, 2012 Mike, Interesting post. However, 90% of CHer's are not male. Somewhere between 50% and 70% are male. Doctors mostly just put females in the Migraine Dept. out of habit and because they are relying on 'old' information. This 'mold' of a male disease has been falling apart for several years now. Also, you don't find 'quitters' here. We are a group of fighters, as you should know if you read this board much at all! > Some have just been fighting longer than others. I don't think you received advice from 'quitters' last year. It came from the 'fighters' here. Pharma does not play a large role here either. On other sites, yes, but not here. From my reading, our members have worked hard and suffered a lot getting rid of deadly meds and regaining control of their lives. You don't seem to have been around much since last December, so perhaps some new things have come to light here lately. 'What do males have in common?' Apparently low T for many!!! You might read up on that here. Threads addressing head trauma have come up inconclusive, just like right vs left brained. I have seen many proposals brought up and never have I seen everyone line up on the same side of the fence. I am glad you have found something that works for you. I just wish you had not referenced 'quitters' and 'medical chatter'. You have been here before. The people who reached out to you did not appear to be hooked on pharma or quitters did they? You seem to feel the head trauma was the cause and Tyramine the trigger. Is that correct? May your solution provide you with a PF life. spiny Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted October 17, 2012 Share Posted October 17, 2012 Glad the attacks have become less severe but sorry they're still there for ya Mike. Agreed with Spiny that the 90% male thing dished out by the medical establishment is just more of their old BS. Too many females who eventually make their way to the CH forums only arrive after an experience with a doctor who refused to diagnose them with CH because they were female. My experience with Sansert is that it is an incredibly nasty drug with horrific side effect potential, and in my case it was ineffective. I think we agree that pharma is fraught with failure and peril when it comes to preventatives for CH! I see from your earlier posts that you tried HBWR, but have you tried other busting substances such as mushrooms (which tend to be MUCH more effective than Sansert)? There are a LOT of CH'ers here who've had incredible experiences becoming pain free and even able to drink alcohol etc. without a triggering effect (including some chronics who've gained 6 months or so at a stretch completely PF) by simply ingesting some of these plants that grow right at our feet, the medicine that nature intended. Granted, when trauma is involved it can be tougher to get anything to work. :'( I've seen so many CH'ers report onset or worsening of their CH following head trauma that I'm personally convinced there can be a connection. So I don't know, this may be a semi-tough crowd for your tyramine avoidance diet - at least with the luckier among us like me who are PF now thanks to busting. Interested to see how others will respond. Quote Link to comment Share on other sites More sharing options...
mikesal Posted October 17, 2012 Author Share Posted October 17, 2012 Bejeeber, I'm ok with the tough crowd. My only thought is to give back and share what I'm experiencing in hopes of helping others. I've had more headache free days in the last 2 months than over 8 years. I can eat something and within 15 minutes get my headache. I basically will cause my own headache issue as I deal with foods to avoid. Like I said it's a moving target for now. I'd be the last person to actually believe what I experienced. I'm driven to give back, no matter where it leads or the shit I get for it. If one person is helped, that is a valuable blessing in my world. Pay it forward... Quote Link to comment Share on other sites More sharing options...
mikesal Posted October 17, 2012 Author Share Posted October 17, 2012 Spiny, I appreciate your feedback, but if all you gleaned from what I wrote is where have I been, a reference to quitters, medical chatter and Pharma you missed my message. You were neither in my shoes, nor I in yours over the last year. I say 90% you say between 50% and 70%. That 20% difference is too much of a spread in my book. You have your info and I have mine regarding numbers, and research. It's all good, but not a factor when folks deal with pain. Seems like your more interested in picking things apart. How many people suffer from these headaches that aren’t accounted for? Threads are threads, not facts. Left side, right side is not even closely related to brain trauma people may suffer from that causes a cascade of following issues they might encounter. You tell me one medical doctor who is able to definitively state what causes a CH? While I appreciate your comment about Low T in males, how is that related to the seriousness of what I wrote about headaches? Because I use quotes from Jimmy V you automatically assume someone is a quitter. Why? I said never give up. I never gave up. More than anything I needed hope and people in my life that were sensitive and understood my issues. No one, including my family understood what I struggled with. It’s hard to explain to someone the life of having headaches when they don’t have the headaches. It’s like arm-chair quarterbacking a cause you have no clue about. I know the struggles with this pain. I lived it, and still do. It was hard to stay upbeat every day dealing with the pain, sometimes struggling with multiple headaches a day. Death may have been a better option some days. You, not me read what you wanted too. Maybe next time ask me for clarification instead of being presumptuous or defending the CB membership regarding my comment. How do you know other members or folks who aren’t members of CB are not dealing with what I shared on Tyramine? I shared my journey in hopes that anyone could connect with my personal struggles and take something good away. I don’t care if I haven’t been on the message board for 10 years. You don’t know my story over the past year. Did you ask? The Message Board is a venue to share, is it not? I shared, you shared. If you’re trying to influence what I say, or share on the message board you got the wrong guy. Again, had I been disrespectful I would absolutely deserve to hear from someone regarding my post. Had I blasted CB (I endorsed the mission) or spoke negatively about the help I received you would have been on point. So, what was your point? Where were you when I was busting? I don’t remember hearing a peep from you. I always thanked the folks that helped me and never started any shit. I am extremely sensitive to what CH struggle with. If one person can benefit from one I wrote that’s a beautiful thing. Why? I know the pain and quality of life that is sucked away day by day from these headaches. Maybe you forgot. Also, what I discovered is not just “something” it is major. Quote Link to comment Share on other sites More sharing options...
spiny Posted October 17, 2012 Share Posted October 17, 2012 mikesal, T replacement therapy is helping many male CHer's become PF. Just a suggestion you might benefit from looking into. spiny Quote Link to comment Share on other sites More sharing options...
mikesal Posted October 17, 2012 Author Share Posted October 17, 2012 Spiny, Been there, done that about 7 years ago with a neurologist from Boston in a study he was doing. Everyone reacts differently to any treatment. Thanks for sharing. MikeSal Quote Link to comment Share on other sites More sharing options...
mikesal Posted October 17, 2012 Author Share Posted October 17, 2012 I know Batch has done a tremendous job with the D3. I wanted to share supplements I've been taking. See PDF attachment. I don't do Cool Cayenne since it's a trigger for me. I found out that some night shade plants can have adverse effects on certain people. MIKE_SALVEGGI.pdf Quote Link to comment Share on other sites More sharing options...
mikesal Posted October 18, 2012 Author Share Posted October 18, 2012 In spite of my open-minded nature I found it difficult to get my arms wrapped around the Tyramine factor regarding headaches. Over the last year I have spent thousands of hours trying to nail down the what and why with my headaches. The PDF abstract is some of the info I came accross along the way to understand causes and triggers, including how the brain is affected. Abstract_of_Tyrosine_in_Headaches.pdf Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted October 18, 2012 Share Posted October 18, 2012 I applaud your efforts... but we are talking about triggers not causes. I am not sure simply avoiding triggers can be considered a treatment. Certainly anything that decreases frequency and severity is most valuable, as anyone who has had so-so results with prevents can attest to... but at the end of the day, all triggers avoided, the beast still comes (at least that is my personal experience). Your info makes sense, tyramine is a trigger for many... and since most preventative treatments just suppress the beast, if they work at all, this may be a viable option for those whom nothing else works. I just feel tip-toeing around the beast is not the same as banishing him. I'll choose busting any day (cause it works for me), and then go on a tyramine binge and enjoy life with the beast gone. Quote Link to comment Share on other sites More sharing options...
mikesal Posted October 19, 2012 Author Share Posted October 19, 2012 Diamondmaker: Who’s talking about triggers and not causes? You use the word ‘we’. I’ve focused on both the cause and the trigger. The two can't be separated. If it wasn't for triggers we may very well have no headaches. I'm also not focused on avoiding triggers as a treatment. I avoid triggers to not get a headache. Big difference. Treatment in my world is busting, O2, and supplements. Yes, the beast may still come because the cause of the headache is still alive and thriving. Busting doesn't banish the beast. If it did busting would be a onetime deal. Wouldn't that be a beautiful thing. One bust and you’re done. The cause cannot be ignored. Put all treatments, and triggers aside. What causes a cluster headache? No one knows for sure. Is it neuro? I shared in another post some possible links but if the medical community knew the cause they would be able to treat the problem. They use different prescriptions geared for high BP, and antidepressants to treat cluster patients that I feel do more harm and exacerbate the problem. I've lived that life before and knew it was not where I wanted to be. It was bad enough having headaches and now we're changing brain chemistry with drugs. Who knows what further complications might occur and I feel preventatives and abortive's make headaches worse from what I experienced when I was taking them. I think we all agree that preventatives are not the answer, but I qualify this in my world because I have taken them and know they did not work for me. Like I said prior, a cause is a cause, and a trigger, a trigger. If I can understand the cause this presents opportunity to work on the problem. If I'm just focused on triggers I'm not going to find the cause, just things to avoid. The problem (cause) remains. And yes, then it would seem like your tip toeing around the issue. I don't tip toe. You hear me coming. I've focused on both (cause & trigger) to get where I am today. If not eating certain foods helps me not have a headache I'll take it. I'm not on MAOI's where I could put my life in danger by eating foods high in Tyramine. I still eat most foods I ate before, and most of the foods to avoid I didn't eat previously. Over time I'll reintroduce certain foods and take it from there. I'm not missing anything regarding food. I get to enjoy it all. Having cluster headaches is a horrible disease. We were not just born with this problem. Something happened to cause us to have these headaches. If it wasn't for the triggers which start the beast in action there would be no issues. Triggers start the whole magilla. I'm focused on anything that will pass the blood-brain barrier and repair, reset, play nice with, rejoin etc. Medical science is amazing and we learn more and more about the brain and how it protects itself from damage, but the brain is complicated and a lot goes on and no one understands it all. I know the value of busting. I know it works and it’s sad that some members of the medical community do not embrace LSD or LSA as treatments for cluster headaches. Maybe one day the medical community and our Government will get out of their own way and listen to the people with these headaches who are the experts and found successful ways to treat a cluster headache. I'm glad busting helps you slam the beast and that you remain PF while you enjoy that Tyramine binge. Mike Quote Link to comment Share on other sites More sharing options...
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