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ClusterBusters

mikesal

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  1. mikesal

    a potential new option

    Les, I get everything you wrote and I thank you for sharing your journey and experience. Licorice root has been used to treat nicotine withdrawal symptoms. I noticed you recently quit smoking. Is it possible your headache symptoms improved because you stopped smoking, and not from the tincture? I take nothing away from your efforts and research but I know every individual responds differently to any treatment. Lifestyle changes play an important role in managing headaches, which I personally attest to. I quit smoking and changed my diet which dramatically reduced my headaches. I no longer have excruciating headaches and live pretty much pain free these days. Cluster headaches can be exacerbated by smoking. Even if you cut down on smoking there can be an improvement in duration, and severity of headaches. My personal situation is not like anyone else's, so my treatment is not a solution for anyone else. I wanted to point out my thoughts on your success, and I wish you a continued PF life. MikeSal
  2. mikesal

    I Ate Myself to Headaches (Tyramine)

    Ricardo, Glad you found a connection between your gut and brain. These challenges can be subtle and don't always get attention from doctors. In our world of pain one change can make a difference in the frequency and duration of headaches which is a beautiful thing. MAOI's present dangerous complications with foods high in Tyramine. I took my BP readings and almost freaked when I had an attack. High Tyramine ingested is thought to cause the vasoconstriction which leads to the headache. My heart would race and I perspired mainly around my neck area. I have looked at food allergies. I didn't want to include too much on the initial post. I also avoid gluten and wheat too. I also avoid most dairy since it caused mucus buildup and led to sinus inflammation that triggered a headache. Yeah, a lot of variables at play. Too many in my view to focus on. Doctors don't have the time to spend sorting through all this so all the research, trial and error defaulted to me. It took years and a lengthy diary to make sense of it all. I agree that most info out there relates Tyramine to migraine headaches. While both headache features somewhat overlap I did not get nauseous, or have aura. When the headache hit I was on the move, no laying down for me. I also noticed when the headache was winding done or done I would get a cold chill. My hope is others find some nuggets in what I experienced and maybe won't need to reinvent the wheel as they deal with these headaches. Unfortunately the medical community doesn't have all the answers as to what causes headaches, so it defaults to us. Wishing you PF days. MikeSal
  3. mikesal

    D3 Survey

    1. Are you: A. [highlight]Chronic[/highlight] B. Episodic 2. With the understanding that there are many factors affecting CH, do you feel that the D3 regimen: A. Did nothing or nearly nothing for you. B. Eliminated your headaches. C. [highlight]Helped with the severity of your headaches but didnÂ’t eliminate them[/highlight]. D. [highlight]Helped with the frequency of your headaches but didnÂ’t eliminate them[/highlight]. E. Seemed to help for a while but then stopped showing anything positive. If this is true for you, how long did this improvement last before stopping? 3. If you experienced positive results, how long were you on the D3 regimen before you experienced them? It was several months before I noticed solid results. The key is to stay the course since it will take time for the process to ramp up and make a difference. MikeSal
  4. You don't need to agree or believe in what I share for it to be of value. I discovered over time, including trial and error how important a healthy diet and vitamin supplementation can help control headaches. Simply put we need to be eating the right foods and taking supplements to help maintain a healthy lifestyle as we age. Batch is on point with the (D3) which has been quite helpful in my life as I struggled with my headaches. We all have our own triggers we avoid. Alcohol, smoking, chocolate, MSG, nitrates, and the list goes on. Our diet and life style can trigger a headache. High BP, diabetes, sinus issues, the weather, exercise can all trigger headaches. No doubt there are other variables relative to each individual but my point is we all received the gift that keeps giving wether we want it or not. There's a reason we became CH sufferers. No one in the medical field can tell you definitively what causes these headaches or why we get them. What I found was that certain foods I was eating were triggering my headaches. There is a strong link between our belly and brain. Anything we ingest that crosses the blood-brain barrier can cause a positive or negative response. I can't eat pineapple, nuts, peanut butter or certain cheeses without getting a headache. But I can eat a wide variety of foods that don't cause pain. I learned this from being completely off preventatives, and testing. Everything I've learned hasn't been the magic bullet, but the quality of my life has improved as I experience less pain when a headache occurs. I still have headaches, but their not like they were before regarding frequency and duration of pain. What I learned is Tyramine is a naturally occurring amino acid which forms from the break down of food as it ages. Tyramine is not added to food, it builds up over time. Left overs in the fridge that we eat days later can contain high levels of Tyramine. Tyramine plays a role of helping to keep our BP on track, but it can also affect our bodies in negative ways. Tyramine can trigger a cluster headache. I've personally experience this based on foods I've eaten. Keep in mind what I eat affects me differently than how it may affect you. I'm not going to list safe or unsafe foods you should or shouldn't eat. I just want to make you aware of its potential in triggering headaches. When I eat something with Tyramine the headache is pretty bad. It all happens with the shadow, stabbing eye pain, stuffy nostril, and watery eye. I abort this event with some coffee and tons of water to flush out. Then several hours later another episode occurs which is not as painful. Then another which is a headache I can stand still and deal with. My point is over time the pain reduces as my body processes what I ate. That food item I had an issue with ends up on my shit list. It's a trial and error process that I refined based on foods I eat. The most important part I learned is to eat well and don't skip meals. Low blood sugar levels can trigger a headache. I know from my personal situation I didn't eat well because of my issue in dealing with headaches and pain on a regular basis. See if this rings a bell... You eat something, watch TV, and then head to bed. While you fall asleep you're woken up with some pressure and the headache kicks in. You scramble to your personal abortive routine and abort the pain. You fall back asleep only to repeat the process several more times. This scenario is what caused me to think about what I was eating before I went to bed. With me it was cookies, M&M's, sourdough pretzels, pizza, soda, man the list goes on. I was eating myself to headaches. I sleep like a baby now, and I don't wake up with headaches like I use to. Good sleep is an important element when it comes to proper headache management. While on preventatives I was taking an anti depressant (MAOI) which made the headache more painful for me. Outside of the CH features I would perspire from my neck. This was a dangerous situation I had no clue about that could have caused me a heart attack. My BP shot up and I felt light headed and unstable. What I learned and found out may or may not be your issue but I need to pay it forward in hopes of my experiences resonating to something you might benefit from. Here's to a PF life. PS. Two good books... The Gut and the Brain Change your Diet, Change your Life
  5. mikesal

    Food

    I wrote a piece not to long ago regarding food. Tyramine has been an area I've explored regarding its buildup in foods that have absolutely triggered my headaches. There are foods I stay away from that have helped me not get the excruciating headaches. I believe there is a relationship between the gut and brain. For me it was trial and error regarding what I ate and getting a headache. A painful process to go through but it led to a more pain free life. I still have issues, but its something I contribute to by reintroducing foods back into my diet. The motivation to not eat certain foods is advoiding pain. What works for me might not be a solution for you, but I feel it's worth it when we deal in pain. The post I wrote was my 8 year journey to find answers. Don't overlook food, as a trigger. I'm here if you need me. MikeSal
  6. mikesal

    best neuro i have found!!!!! in florida

    I'm happy you found a Neuro who seems to be engaged and aware of CH. Conidi was the 3rd neuro I saw over my 8 years of having CH. Please know that I'm not trying to steal your thunder or hope. He may not push narcotics but he does use preventatives and Imitrex as treatment. It's good to hear his bedside manner may have improved because having a friend (I heard the story) is much different than suffering with CH personally. My last office visit after seeing him for over a year went something like this... He was sitting at his desk at the PSL office with his bulldog at his feet, drinking a Red Bull, and he said "I can't help you anymore". My son grabbed me as I'm crawling over his desk to grab him by his throat. I was excited too when I first met him. The bottom line is unless they have CH most Neuro's don't have a clue. My personal opinion is most Neuro's suck, it's who sucks the least in helping with the beast. Best of luck. Maybe after me he got his act together. Have you met his mother yet?
  7. mikesal

    My 8 Year Journey for Answers

    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
  8. mikesal

    My 8 Year Journey for Answers

    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
  9. mikesal

    My 8 Year Journey for Answers

    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
  10. mikesal

    My 8 Year Journey for Answers

    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
  11. mikesal

    My 8 Year Journey for Answers

    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.
  12. mikesal

    My 8 Year Journey for Answers

    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...
  13. 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
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