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Showing content with the highest reputation since 01/28/2020 in Posts

  1. 4 points
    Second Update from the OP Well Hallelujah and pass the ammunition. Last week I got a call back from my Doc's office, they needed help filling out a form from Aprila Healthcare for the O2 setup. They asked me all the medical questions again about our condition, stuff I know is in my record, but I'm in no mood to complain since it looks like we're making progress. Stuff like eye swelling, nasal congestion, consistent pain location etc (you know all the symptoms). She says she's sending the form over to Aprila and they should contact me. Sure enough Aprila calls me Friday to set up an appointment. I have to come in to be trained how to use the equipment. I went in for my appointment today, got the rudimentary explanation how to use everything, They gave me 3 small tanks to take away with me, mask, hose, regulator and carrying rig. They set me up for delivery of their largest tank, which is supposed to come this afternoon. They'll deliver tanks whenever I need them from this point forward. Here's the kicker - Its all covered by insurance! I was presented a zero dollar invoice when I left. After all the hassle, I felt like I hit the lottery. I guess calling my CEO and complaining to him about our health insurance may have helped. Apparently threatening to pull the account of 600+ people has a way of getting an insurance company's attention.
  2. 4 points
    Steve A

    Thank you!!!

    I wanted to take a second to send a HUGE thank you to this website and it’s moderators. Four weeks ago, after a 15 year absence, my CH returned. And with a pain level I don’t remember. I didn’t know what to do and couldn’t remember my drugs I used to take or if there were even any changes in prevention and treatment. I went to my own general practitioner and as I explained what was going on, he began thumbing through his drug catalog, gave me a referral and that was that. I called the doctor he referred me to and he couldn’t see me until the end of February, clearly (or hopefully) beyond my need to see him. This past week I was in hell. Multiple attacks per night and then attacks while I was at work and driving to work. All I had were triptans at my disposal and those were clearly messing with my cycle, making it impossible to predict and creating multiple attacks per day and night. Wednesday evening, after having three kip 7 or 8 attacks, I found myself in my partners lap sobbing. I couldn’t find someone to help me an I didn’t know how to fix it. That morning, I found the list of recommended doctors on the site. Curiously my referred doctor was not there, but there were three others. One five miles from my home. I called them fully expecting to get the, “we aren’t seeing new patients until later next month”. But instead, after telling her I suffer from CH, she asked me if I was available this morning at 7:00am. Needless to say, my emotion bled through the phone. I felt saved. And this morning I went and met the most amazing people. They knew what CH was. They knew how much we suffer. They told me that CH sufferers always get bumped to the front of the line. They knew of all the current treatments and gave me the options of choosing. And to top it off, at 7:30, I started an attack. The doctor injected me with imitrex, guided me to a quiet room, and let me deal with the beast in private. When I came out, I had a bag of goodies that I had recently paid an arm and a leg for, and several reassuring smiles that made me know, I am in good hands. And I wouldn’t have found it if it weren’t for this site. I am eternally grateful. I don’t know if I found my personal fix, but I found a trusted partner in the process. Thank you.
  3. 3 points
    spiny

    Foods that trigger CH's

    Caffeine does not trigger CH. From my personal experience and the people here. It is a very effective aid in moderating or aborting a hit for CHers'.
  4. 2 points
    Day 5 of 100% pill, med, vitamin and everything else free. Still feeling better then I was before I quit it all. I have gotten 1 or 2 hits a day that I do use oxygen on but over all I fell surprisingly good. Hope I get through the weekend, they are worse then weekdays due to relaxing I believe. I will continue to go without taking anything for a few more days then I need to decide if I am going to order Emgaility, I am due to take that next Friday.
  5. 2 points
    Cast Iron

    Positional Headaches

    Hello SPP-Fan Welcome to this forum, although not good that you have found it as CH cluster headache is a serious thing if you have it. My first thoughts are to see if you have one or more of the following signs or symptoms: Excruciating pain that is generally situated in, behind or around one eye, but may radiate to other areas of your face, head and neck One-sided pain Restlessness Excessive tearing Redness of your eye on the affected side Stuffy or runny nose on the affected side Forehead or facial sweating on the affected side Pale skin (pallor) or flushing on your face Swelling around your eye on the affected side Drooping eyelid on the affected side Diagnoses of CH is done by eliminating possibilities while taking into regard the above symptoms. Especially the first and second may be a first indication for cluster headache, along with a one or more of the others. People experience sometimes different signs because CH can morph over the years, but as a starter you can see if the above applies. Seriously hope it is not CH and take care the next time you have sex.
  6. 2 points
    spiny

    Foods that trigger CH's

    Thankfully the medicos are learning that CH affects women about as often as men. Many women were labeled as having migraines when actually they had CH. And then they are prescribed a Triptan in pill form, which is pretty useless for CH. Takes too long to kick in. Your move and the return of CH has reported by many. I had the same thing happen 16 - 17 years ago. I had been PF for 10 years! It is disgusting when it happens. With no O2 at the moment and you being in Ohio, you could truck it outside in the cold and do your deep breathing and forced exhale there. It should provide some relief. Sometimes you can do the breathing with just air and benefit too. Cold does seem to work better. I would suggest you hit the caffeine first! Some put their feet in water as hot as you can stand it. These methods work best if begun early! Another idea is to sleep in a recliner, just keep your head above your heart. It is good for night time hits. As an added bennie, you will wake sooner if you get a nocturnal hit. Another thing: If you can't get O2, like many of use, you can use a welding set up. Welding tank of O2 and your regulator and mask. The non-rebreather Clustermask is the BEST! Welding O2 is safe to use. I hope that some of this helps. I definitely would begin the D3 Regimen ASAP! It is easy, no doctor needed, and all good for you stuff. All the best! We are here to help you get to a better place. I changed my original post to you and deleted most of it after I did a bit of research. It was another poster that I saw, not your posts! Apologies.
  7. 2 points
    kat_92

    Vitamin D3 regime

    https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people found it! Sorry I’m at work at the moment someone else had posted in another thread. Please read carefully
  8. 2 points
    CHfather

    Vitamine D3

    Your friend can't get nearly enough D from foods. Batch's recommended minimum daily dose of D3 is 10,000IU. Your friend would have to eat between 5 and 10 pounds of salmon in a day to get 10,000IU (depending on whether the salmon is wild caught or farmed). More than ten pounds a day of fresh herring; more than 20 pounds of pickled herring. More than 6 tablespoons per day of cod liver oil. Pills are a lot easier. https://www.healthline.com/nutrition/9-foods-high-in-vitamin-d#1
  9. 1 point
    First of all, I have to say as far as I know, when treating illnesses, Ayurvedic approach does not aim to treatment, it aims to curing the condition. I had to make this post when I saw people making fun about Ayurveda in Facebook Cluster Headaches group. I think a great place for more serious discussion about this would be here in Clusterbusters forums. As a personal opinion, I think Ayurveda would have a lot to offer for CH patients and I have seen some of this potential myself. This is something we would seriously need to look into. I have heard wiser people than me say that Ayurveda might have a chance to "cure" CH, although I am doubtful, I am not ruling that one out. Here in Finland we were blessed to have a lecture put together for us by 2 Auyrvedic practitioners in finnish CH convention. Clusters were (at first) new to them and naturally Ayurveda new to us. It turned out that Ayurvedic medicine has known clusters pretty much longer than western medicine, which is not surprising at all (after all, our "system" and knowledge is based on these ancient ones). When practitioners started to look for clusters in old Ayurvedic texts (dated back thousands of years) guess what herb they have used to treat CH? Yup, liquorice root. Ayurveda is much about changing your life, getting to know your body type (and yourself), adjusting your diet - many of the the things that will definitively link to anyone's CHs. There is a possibility to arrange a study about this. Anytime. I can also deliver more information about this if there is interest to learn more. I truly wish some people would get into this. For me, Ayurveda is probably the healthiest way I have ever heard of with what anyone could treat their clusters. I simply have to repeat; it's possible to arrange a study to see how Ayurveda actually could help in cluster headaches. How valuable would that be to the whole CH community? Based on what I know about clusters and the little I know about Ayurveda, I can't even imagine.
  10. 1 point
    Hey @Vipul, interesting (I read the abstract in reference 6 as well) thank you for sharing. If you have not had imaging studies by all means get them! That should have been done right away to rule out tumors etc.
  11. 1 point
    Hi, found this very interesting Ayurveda diagnosis and treatment for cluster headaches. Attached fyr 2191_2194.pdf
  12. 1 point
    FunTimes

    Lithium or Occipital nerve block

    I have stopped taking all meds for 3 days now and do not notice any change in cluster behavior if anything it has gone down. I do realize that I still have some in my system and that the shit is bound to hit the fan sooner or later but as of rite now I feel good. I am not due for the next shots of Emgality until the 14th so I will see how I am feeling by then.
  13. 1 point
    Pleased to say we are starting to get a bit more rain in New South Wales, particularly in the Hunter region, hopefully the end of summer will be the ass end of these fires
  14. 1 point
    CDog

    Anyone tried Wim Holf's method for CH?

    He does breathing exercises Batch, not just getting cold... I have done them with varying results. They have not taken away a hit, but have eased them.
  15. 1 point
    Batch

    Anyone tried Wim Holf's method for CH?

    Getting cold will not replete a vitamin D3 deficiency.
  16. 1 point
    CHfather

    Foods that trigger CH's

    Maybe for some people caffeine is a trigger. For most people it's an effective abortive. Those pills might or might not be helping you, Talia, but the caffeine in them is probably trying to help.
  17. 1 point
    shitiz bansal

    exercise and sex

    I am suffering from cluster headache since 2003. Over the years, It was misdiagnosed several times such as: - Weak eye muscels - Dry eyes - Sinus blockage - Tension headache - Psychological (its nothing just you think so you feel it) It occurs to me every 11 months and lasts 15-20 days. I consulted a neurologist only in 2020. Till then, I found an indigenous way to get out of it. When I do intense cardio exercise within a very short interval, the upcoming attack subsides. What I mean is that you get a time window of about 2-4 minutes where the pain is very mild and is only beginning. So, in that window, all you have to do is get your heart rate to about 150 bpm. If you do that, the pain will naturally go away. There are 2 advantages of this treatment: 1. You don’t need to take any steroid or any injection. It is completely natural. And some exercise can never hurt. 2. It releases anti oxidants which uplift your mood. So, you don’t get depressed in that period. One thing to note that if you have missed your window of a few minutes and the pain reaches its peak, the exercise won’t work no matter how hard you do it. Also, I have tried strength training (eg. Lifting weights) in that period and it does not work. Only cardiovascular exercises work. It sometimes does not work if you get pain in the night. This is because in the night you wake up with the pain only when it is strong enough. So, that time window within which you can exercise has already been missed. One more thing I want to share that I have found out by myself is that when you are suffering from pain and you don’t have any other way, engaging in sexual activity proves to be a very nice distraction. No matter how serious the pain, it goes away as long as you are engaged in that activity. Regards Shitiz Bansal Whatsapp-9643753154
  18. 1 point
    Steve A

    Thank you!!!

    So I got all my D3 stuff today and I’m set to start that on my own. I did mention it to her during my consultation and she said she had heard about it but didn’t know enough about it. She didn’t poopoo it and said that it didn’t sound like it would hurt. She prescribed a prednisone taper which is pretty mild because I am likely nearing the end of my cycle ( at least I hope so) and I’m going in tomorrow morning to Get my three Emgality shots. I’m going to confirm with her that she sees no problem with me doing the D3 in parallel with this. I realize that I won’t know what ultimately “fixed” considering I’m going down three paths, but Whatever it takes to get my life back. We did talk about O2 and when the beast returns next year, I’ll likely go that route instead of the triptans to abort. Any holes in my plan?
  19. 1 point
    Pebblesthecorgi

    Busting with this medication

    You are presenting a fairly significant list of prescription drugs largely aimed a an individual with significant reactive airway (or COPD) lung disease. The asthma meds are a mix of bronchodilators (open up airways), inhaled steroids and a combination of the two. The medrol is a steroid (fairly equal to prednisone in potency) I would assume being indicated for the lung condition. Zolt is a proton pump inhibitor similar to protonix which blocks the production of gastric juices irreversibly. It works through an enzyme system and generally is used in short courses, it does not work right away but you dont want to use it in a sustained manner either. A beta blocker is usually used for hypertension although it has a role in migraine prevention and heart disease. The estrogen preparations are used vaginally and have little systemic absorption once used for 6-12 weeks. So if you subscribe to the belief steroids are blockers there is a concern about the medrol and some of the inhaled meds. The bronchodilators can cause feelings of anxiety and a rapid heart rate but should not block. I doubt the proton pump inhibitor is an issue. Systemic estrogen can increase drug metabolism in the liver but usually vaginal estrogen doses are insufficient to cause that. Beta blockers show up on some blocking lists but I doubt its a real issue. This is the med list of a person who has significant medical issues. Would not advise stopping any of the pulmonary drugs without close medical supervision. If she has been on steroids a long time I suspicion they are required for handling physiologic stress and weaning is probably not practical. She needs to be well prepared for the anxiety that can accompany a busting experience and a sitter needs to understand her breathing issues. Ultimately it is her decision but tread lightly Significant care and caution are urged.
  20. 1 point
    Pebblesthecorgi

    Ketamine test on Dr.John Lilly

    Why do I feel like I do after a Jehovah's Witness or Hari Krishna just knocked?
  21. 1 point
    CHChris

    Prescription Frustrations - long rant

    Once I went to strictly welding O2 I thought I was set. But there are still problems sometimes. I usually have to prove ownership of the tank by carrying around the purchase receipts when I have them filled. I often have to exchange my tanks, which I hate but tolerate. I also still carry a print out of my O2 Rx with my portable tank, regulator and mask. But I NEVER mention medical oxygen or Rxs with the welding store. They get really weird about selling welding o2 when you do that. I have two 125 cu ft tanks (M tank) and I fill them with welding o2 for $20 each. I also own 2 E tanks that I fill with a transfill rig I bought off Amazon. These days my O2 bill is down to about $40-60 per month. However, there were some steep up front costs. Each 125 cu ft tank was about $250, and the E tanks were about $50 each. The transfill rig was about $80 off Amazon.
  22. 1 point
    kat_92

    Prescription Frustrations - long rant

    @signals61 hey! I too had similar frustrations with the oxygen. My doctor even warned me ahead of time that he would gladly write the script, but that doesn’t mean I would easily get the O2. When I called to get the oxygen they said I needed a blood test to confirm that I needed the O2 in order to live. When I explained it’s for cluster headaches she cut me off and told me they don’t cover oxygen for “headaches” because it’s not life threatening LOL. I told her it’s not life’s threatening but cluster headaches will make you wish you were dead. And I hung up on her. Long story short, I didn’t go through my insurance and I pay $78 per tank out of pocket. Kat
  23. 1 point
    Jost

    Prescription Frustrations - long rant

    @jon019 You're right and at my worst moments last summer it would have saved me from the total agony of "10" attacks that came like clockwork every 12 hours. If I'd have been prepared ahead of time it would have saved my daily life and allowed me to function I'm sure. The key is being prepared and therein lies the rub. Obtaining oxygen is not easy either way and more complicated than it should be. I appreciate that is something a lot of people on this board fight for. Whether by prescription or "homemade" it shouldn't be so difficult. The fight to fill a prescription is exhausting and if I didn't have a nephew who does welding I'm not sure I could put all the pieces together for my own kit without some difficulty. Now that the vicious CH cycle has morphed into something more manageable it is time to look into oxygen.
  24. 1 point
    Jost

    Prescription Frustrations - long rant

    This is why I cringe on this forum when someone glibly tells me (or someone else) that I should be on oxygen. As if I hadn't considered it and the hurdles aren't insurmountable. I haven't found a doctor yet who over the years hasn't waved me off with the request. Much less have the chance to try to get it filled. It was kind of a bummer reading this because I have been thinking about trying again but probably not now. What's the deal with welder's oxygen? My nephew does welding and he does it in his garage. Should it be easy to setup for medical reasons? Is there any info on here in a single place by any chance?
  25. 1 point
    spiny

    Banana peels for clusters !

    Wait, you supposed to peel them??????? ;D Oops.
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