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Showing content with the highest reputation on 01/10/2020 in all areas

  1. I hope you can see our posts those who are not on social media. We have been building this association for a LONG time. I am hopeful to be able to jump out from the fast-paced social media sites and back into the more serene places such as this one. Many of you are often in my mind. Today was a special day and a day to remember it was you all here in this very forum that helped me in the very darkest of hours. I hope the absolute best days for everyone and for that day to arrive when no one has to survive Horton / clusters anymore. PF wishes ! https://www.facebook.com/hortonassociation/
    2 points
  2. Please do explore the O2 and read and use the proper method for it to kill the hit. Yes, it is w.o.r.k. You have to get the bad stuff out by doing a crunch when you exhale and then inhale deeply, hold it a bit, then exhale with force - like a crunch when exercising! Your breath should hiss at the end like when you do a breathing test. And stay on for about 5 minutes after the hit is gone. Just lower the flow rate to match your normal breathing pattern. It really is a lifesaver! That video hurt to watch. So many days like that in my history. Your O2 should be your best friend!!
    1 point
  3. Hi Newbie, I have a similar history in that I experienced my first attack at the age of 19 (I'm 58 now), I was in the Army and the Army docs had no idea what they were dealing with so they just injected me with Demerol or Morphine to kill the attack. Didn't get diagnosed until roughly 4 years ago. I have what is referred to here as episodic attacks, usually once a year, lately twice a year. The attacks last about 45-60 days. Thinking back, I may have managed a year with no attacks, but it's hard to remember that far back. My General Practitioner initially prescribed Sumatriptan in pill form - this "worked" but took almost as long as the attack would last. After a couple years, I finally found a Neurologist and he prescribed Sumatriptan in injectable form. This is the single best treatment I've found to date, though with some side effects (more on that later). My Neuro also prescribed Verapamil as a prophylactic (preventive) measure. I took it for about a year before giving up on it, since it didn't prevent further attacks and I am already on another medication for hypertension (Atenalol) I'm currently using the D3 Vitamin regimen discussed at length on many posts here. I can't say if it works yet, since I started it at the end of my last cycle, but I'll keep it up until I feel like its not worth the trouble. Most everyone here talks about oxygen as an abortive measure. As I write this, I'm going through the process to source all of the components for that treatment. I have a strong belief that it will help, just based on how well I know my own body and all the positive stories here. Getting oxygen is a pain. I got my GP doc to write me a prescription without much trouble at all (a lot of people here talk about that being one of their biggest challenges), but that's where my challenges began. I took my prescription to a local medical supply, long story short, they refused to fill the prescription. I even offered to self pay, but it was no dice. I'm calling around today and hope that Airgas will help, but if they won't, I found a source on amazon for an industrial tank, prefilled, and I can go to Tractor Supply or the local Farmers Co-op to get it refilled. I talked about side effects with Sumatriptan - know that this drug is a powerful vasoconstrictor. That's what relieves the pain in the head, but it also gives me a heavy pressure feeling in the chest as it increases blood pressure. Constriction of arterial vessels increases systemic vascular resistance, which leads to an increase in arterial blood pressure. Constriction of venous vessels increases venous blood pressure and increases cardiac preload and cardiac output, which increases arterial pressure. All of this is not really good for an overweight smoker in his late 50s. I won't give up the Sumatriptan, but I've taken a couple of steps to help. First, I talked to my Dr. about prescribing a vial instead of the preloaded autoinjectors. Many folks here believe we don't really need a full dose to get relief. So, I'm hopeful this will help. It also means I don't have to hoard as much of the drug during my off cycles so it lasts through the attack season. (Insurance company only allows for about a dozen injectors per filling, so I make sure to buy all year long so I have enough on hand when attack season starts. Second, as mentioned above, I'm getting oxygen. Other things that help - everyone is different, your mileage may vary - Caffeine - energy shots or coffee. These can make things a little more bearable, but its not always helpful since most of my attacks happen at night when I'm trying to sleep or get ready for bed. Sleeping in an elevated position - I sleep in my easy chair during attack season. Sometimes I can get through the night, sometimes not. I find a nice long hot shower to be helpful when nothing else is available. I avoid alcohol during the attack cycle. Any amount can trigger an attack, within 30 minutes of the first drink, like clockwork. I've talked to a few folks here who share the same experiences as me, high stress is good to prevent the attacks, relaxation brings them on. Strange, but true, at least for me. This leads to my attack cycle being very exhausting. When the cycle ends, I sleep for days just to get caught up. I hope you find my story helpful and you find relief.
    1 point
  4. Yes, Verap works for many and very well for some. Others have it work for a while, only to fail in the long run. It is a first line med for CH. It lowers blood pressure, so that can be a limiting factor. What is your BP? I took it for over a year and it worked great. Then I went off on the advice of my dentist. When I tried to go back, the 240mg I took per day did nothing. And my BP went down to 80/60 when resting. That prohibited an increase, so I ditched it. If it is not working, why take it? If you can take a high enough does, it usually works. You can find a lot of info on busting in the closed boards. Many will not join in on the 'open' boards - the ones you see listed before logging in are the open boards. And the bots can access them. Read the New Users Banner at the top of the page for a lot of info on the site. O2 is the best abortive, but it must be used correctly and at a flow rate of 15 to 25 lpm. Used incorrectly, there is little to no benefit. Doctors generally just prescribe and do not know how you need to use it for relief. Read the O2 page. It should be your best friend. I also suggest the D3 Regimen. It has been a lifesaver for many of us! Have you been given a run of Indomethacin? There is a CH look-a-like that responds very well to that while CH does not. I bring it up because you are having up to 12 hits a day. How long do they last? ATB and Welcome!
    1 point
  5. Hi Kat, This is also my second attempt. I tried it a week before this trial and it also completely failed and had to discontinue after 2 days. After the second day, I woke up ill like a dog and started vomiting until in the afternoon. Then it got better. Now for this second trial, I did not have this side-effect. Only terrible pain in my stomach the first 3 days but that went away. I take Pantoprazole to protect the stomach. Now I am completely fine. Dizziness I have occasionally and it last around 30 min but I am fully functional so no big deal. I also took a more stringent approach. I have 3 doses per day so I keep as close as possible to one doses every 8 hours. Taking the pills with a glass of milk + some food is also better than take them with just a glass of water I feel. I read it can take up to 7 days to work so you have to give it some time to become fully effective. With me it took around 5 days to really kick in. Also the recommended doses are different. For CPH 150 mg/ day should be sufficient but for HC, they often need to go up to 225 mg/day.
    1 point
  6. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people
    1 point
  7. @20yearslater welcome! This is my first time with Ch as well (started in July). I had very dull headaches for 3 months at a time and then they went away for 3 years! And then BAM. Back again. So I am thinking they are getting worse over time. I would start the d3 regimen! It’s a lot to type out but search for the info in the bar and you’ll find all the info you need. Many people have success with that. I have avoided sumatriptans because I’ve heard they can make cycles longer and more intense. That might be why your headaches are coming more frequently....or the cycle is just ramping up. It’s hard to say. Typically people with O2 use that as a first line of defense and the sumatriptans are used when O2 is not available ( in your case bring them to work!) I hope you find the forum helpful. I’ve gotten more help here than from most doctors I’ve seen (5 neurologists at this point...scary how ignorant they all were) good luck! Kat
    1 point
  8. Hey Virrr, Thank you for the feedback. Having CH return after an initial pain free response to the anti-inflammatory regimen is not uncommon and easily fixed. It happens to roughly 5% of CHers starting this regimen. What has likely happened is you've burned up available cellular concentrations of magnesium that's needed to hydroxylate (metabolize) vitamin D3 to its genetically active metabolite 1,25(OH)2D3. The simple fix is stop taking vitamin D3 loading dose for a day or two and double the magnesium dose to 800 mg/day split 400 mg in the morning with breakfast and 400 mg with the evening meal. When you restart the loading schedule, continue taking 800 mg/day magnesium through the 12th day of the loading schedule, after which you drop the Vitamin D3 dose to an initial 10,000 IU/day maintenance dose and the magnesium back to 400 mg/day. Doubling the Omega-3 fish oil can also help while on the 12-Day accelerated vitamin D3 loading schedule. VocTeacher is spot on... Vitamin K2 also helps. If this doesn't get you back CH pain free, add 500 mg/day Quercetin. It helps activate the vitamin D receptors (VDR) that are needed to continue the genetic expression that prevents CH. If that doen't work, you may have picked up an allergy to something in your environment or diet. Allergies release histamine in such large quantities, they make nearly all forms of CH prophylaxis ineffective. In this case, see your local chemist for a first-generation antihistamine like Diphenhydramine (Benadryl) and take at 25 mg every 4 hours for a week to ten days. Second- and third-generation "non drowsy" antihistamines don't work as well as they cannot pass through the blood brain barrier to block histamine H1 receptors at the genetic layer. Just be careful and not drive as this much Diphenhydramine will make you drowsy. If you need to drive or be sharp as a tack during the day, wait until you're home for the day then take 50 mg Diphenhydramine as you walk through the door and another 50 mg at bedtime. Regarding the placebo effect... it happens with all forms of cluster headache prophylaxis not just vitamin D3. As the raw efficacy of the anti-inflammatory regimen is 52% for a sustained pain free end point response and 80% for a significant reduction in CH frequency (an average of 3 CH/day down to 3 or 4 CH/week), both are well beyond the highest reported placebo response in CH of 14% to 43%, the lowest value was reported using the strict endpoint; cessation of headache attacks. (Nilsson Remahl AI, Laudon Meyer E, Cordonnier C, Goadsby PJ. Placebo response in cluster headache trials: a review. Cephalalgia. 2003 Sep;23(7):504-10.) Even if it was a placebo effect... you're still pain free so who cares... If you're the curious type and want to know for sure if this regimen is effective in preventing your CH or if it's the placebo effect... wait until you've been CH pain free for at least 2 weeks then stop taking this regimen... If you're like me and many other CHers, your CH will return in 3 to 4 days and could take as long as a week. When the CH returns (and it will), restart this regimen with a couple days at a 50,000 IU loading dose then drop back to your maintenance dose of 10,000 IU/day. This will get you back CH pain free in a day... two days tops. I realize this sounds like a silly thing to do, but it will accomplish two things. (1) It lowers the probability it was a placebo effect and (2) more importantly, it will give you confidence this regimen is actually working to prevent your CH. When you've completed 30 days on this regimen see your PCP or neurologist for lab tests of your serum 25(OH)D, calcium and PTH. If there are any questions about these lab tests, give your PCP/neurologist a copy of the anti-inflammatory regimen CH (and Migraine) preventative treatment protocol from the following link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 When you have these lab results in hand, please find the time to take the online survey of CHers taking this regimen to prevent their CH. To start this survey, click on the following link. We need results from CHers like you to convince neurologists this regimen is a safe and effective CH prophylaxis. http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 Thanks again, take care and please keep us posted. V/R, Batch
    1 point
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