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ClusterBusters

Freud

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Posts posted by Freud


  1. And none of us mentioned everyone with CH or a look alike (they all fall in a constellation of disorders called TACs triginal nerve autonomic cephalgias) you should have your noggin scanned to rule out a treatable aneurysm....

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  2. I forgot to mention if you do get sumatriptan injections ask to get the 6mg/ injection auto injectors. You can take them apart and get 2-3 doses out of each. This way you would double to triple the amount of injections you get. I can walk you through this and steer you to some YouTube videos if you get them. 

    • Like 1

  3. Hi Jeler,

    welcome to the board, sorry you have to be here. A few things:  Firstly your neuro should have prescribed 2 things. One, high flow Oxygen Via a NON-REBREATHER mask @ a minimum of 15-25LPM. Most of us prefer/ require 25LPM. This usually requires you to buy your own regulator. Oxygen typically aborts a CH in 5-15min. You stay on it for an extra ten min or so once the CH aborts. If you don’t have insurance there are other options like welding oxygen setup and you buy your own regulator. Regulator you’d need click on the 0-25LPM choice then you buy the CH (cluster headache) mask setup Cluster mask O2 kit w mouth piece  If you do get oxygen from a medical prescriber you want to make sure the supplier you use has M tanks and E tanks. I keep a big M tank next to my bed, one down stairs. And now one in my car. If there isn’t room in the car for the big M tank I take several E tanks w me. I suffered with out oxygen for the first year I had CH. I’m chronic CH so it started about 2 years ago and I don’t get cycles it’s an every day thing...  I can’t say enough about oxygen!  Secondly, sumatriptan injections not pills to abort the really really bad attacks. Sumatriptan if over used can increase intensity and duration of cycles if you’re episodic. I use mine sparingly. You only get 10-16 a month and I get 200+ CH a month. I save them for when I have something important to do and I can’t bring my oxygen w me.  They usually work in ten min or less. Rarely as much as 15-20min for the real bad kip 9-10s (look up KIP pain scale for CH). 

    PSA over :-). Now getting to your current treatment plan. Some people do respond to verapamil like it’s a miracle drug but not most. However you’re dose should be titrated every 7-10days by 80mg increases. Most people that find relief w verapamil need doses as high as 900+mg/day. The immediate release has been shown to be more effective than the sustained release form. You should at a minimum have an EKG done every time they increase your dose to make sure you don’t get heart block. I strongly suggest getting a cardiologist to follow you and make an appointment for a blood pressure check and EKGs. I was on as much as 800mg a day (couldn’t tolerate more, got blurry vision), did that for a year, wasn’t helping, I developed CCB (calcium channel blocker) related peripheral edema. It was significant, put the water in slowly over time couldn’t figure out why I was gaining so much weight. Then all of a sudden I woke up and my legs were huge w edema like a heart failure patient (I’m. Cardiac surgery Physician assistant). I halved my dose, called my cardiologist with my self diagnosis and he agreed time to stop completely. Since I came off a few weeks ago I lost 13 Lbs of water!  I still recommend trying it but you can’t give up until you’ve gotten to higher doses. MUST have your EKG and BP followed!  Steroid tapers can work for some. Some people get a break and the CH comes back as soon as taper is stopped, others can abort a cycle. Steroids should not be used long term, and they are not benign. Several members here have gotten AVOTH (avascular necrosis of the hip) femoral head dies from lack of blood supply over a period of time and necessitates a hip replacement. It is very rare but does happen. 

    Besides professional help, although many headache centers and docs support what we do here. This site was created to educate and advocate for “Busting”. Please click on the new user blue button on the top of the page. Read everything!  Then make a post on any of the private boards, usually theories and implementation...  we don’t discuss busting much on the public board.  There are other tips and tricks like energy drinks or shots. They don’t work for me but others swear by it. If you want a good laugh search this site for “cure” and look through the 27 pages of results. I started w the oldest post first and went from there. People have tried almost everything you can think of like drinking their own urine to hot pepper sprays in the nose and a lot of others. But I can say this for certain this site and busting has saved lives, gives people hope (you’re not alone) May think about attending the national conference in Dallas this sept 19-22. There will be a lot of survivors there some with 20-40+ year histories!  And lastly there is @Batch‘s Vitamin D protocol w cofactors. He has stated it can be just as effective as busting (helps about 80% of us I think) it does require some lab tests your primary or neuro need to order)but I’m sure he will chime in and make suggestions.  I’m sure I’ve left something off but this is a good place to start. Please click on that blue button and dive in head first. Looking forward to hearing more of your story and questions. 

     

    Pain in free wishes (PFW)

     

    Brian

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  4. Wow Batch thanks for all the info!  I wasn’t specifically looking for an RA taylored program but how is the best way to bump him up. You’re knowledge and desire to help others is honorable!

     

    thanks again

     

    Brian

     

    So my last dose of L was Sunday. Tuesday and Wednesday I actually got 3 hrs of sleep a night. Then I got hit all day yesterday until 3am. Slept to 1030am today which hasn’t happened in 4 months. I’ve only had one CH today so far!  So I’m probably going to dose w L tomorrow. And stretch it out a week at a time to a month if I can make it. Then monthly doses. I’m getting ahead of myself but it just might be working again!

     

     

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  5. Looking forward to shaking your hand and picking your brain.  Unfortunately I have yet to start the protocol. However, I am sure when I see BHD he will be more than happy to order the labs I need (my last PTH was boarderline high as well as Ca++) and not to say “well I’m ok with it, but have some one else draw the labs and follow up with you.”  I hardly see my primary doc, I see him once a year for a H&P. I see my CH doc every month to three months. I’ve been an uncontrolled CCH since I started this ride 2 years ago. But I am looking forward to starting, my 25(OH)D is 30!  My fathers is 33 and he was taking 15,000 IU/Day for ever. He has RA and I told him it’s the anti inflammatory regime... That he needs to do a loading dose otherwise he’s never going to get it over 80-90. Any suggestions for him?


  6. Found this document that reviews a lot of GONB greater occipital nerve block...  mainly in migraine but I’m still scanning it to find the CH study. https://www.uhcprovider.com/content/dam/provider/docs/public/policies/comm-medical-drug/occipital-neuralgia-headache-treatment.pdf#page3

    Not what I was looking for but may answer your questions if they just do one: https://www.mdedge.com/clinicalneurologynews/article/56433/pain/occipital-nerve-block-cluster-headache-two-thumbs

    still not what I’m looking for but a good resource  scroll down to the chart and you can click the numbers to see the study... https://headachejournal.onlinelibrary.wiley.com/doi/full/10.1111/head.12053

    BBL when I find the CH one. 


  7. So I just got home. Drove dad across NJ all day, threw my M tank in the car and as it happens I was lucky enough to get a migraine last night that’s being a persistent bugger. And the Ch doesn’t scare it away any more they both occur simultaneously. So I haven’t looked up the study yet to give you numbers on avg pain free or reduction of severity time. All I know is if they will do it 3 consecutive days (fairly positive that’s what the study did but I’ll dig it up) you get the best results. The only real side. Effects besides the standard ones for steroids which can rarely include a vascular necrosis of the hip the main risk is balding at the injection site with frequent blocks. The steroid risk is minimized greatly compared to oral or IV doses. I would try it for sure. Everyone responds differently as usual... they did help me though. The first time I went to him to beg for some kind of help, he did the occipital and SPG blocks and it did stop the CH I was having dead in its tracks. Even if they won’t do the consecutive blocks it’s worth a try if it costs you nothing but travel and stuff. 

     

    I will I’ll do my best to find the study so you’re armed with the info. When is this supposed to happen?


  8. So I just got home. Drove dad across NJ all day, threw my M tank in the car and as it happens I was lucky enough to get a migraine last night that’s being a persistent bugger. And the Ch doesn’t scare it away any more they both occur simultaneously. So I haven’t looked up the study yet to give you numbers on avg pain free or reduction of severity time. All I know is if they will do it 3 consecutive days (fairly positive that’s what the study did but I’ll dig it up) you get the best results. The only real side. Effects besides the standard ones for steroids which can rarely include a vascular necrosis of the hip the main risk is balding at the injection site with frequent blocks. The steroid risk is minimized greatly compared to oral or IV doses. I would try it for sure. Everyone responds differently as usual... they did help me though. The first time I went to him to beg for some kind of help, he did the occipital and SPG blocks and it did stop the CH I was having dead in its tracks. Even if they won’t do the consecutive blocks it’s worth a try if it costs you nothing but travel and stuff. 

     

    I will I’ll do my best to find the study so you’re armed with the info. When is this supposed to happen?


  9. I haven’t read all the posts, I just had a Sec to stop by, but I got occipital blocks and spg blocks done twice a week by a pain doc. He did both sides which seemed odd to me, I went for 8-10weeks. Ended up w a 8K bill and they helped but didn’t stop my CH. I have come to find out by my neuro who had trained the pain doc I saw. So he knew he was doing unnecessary procedures!!!  Then I found out he wasn’t doing the greater occipital blocks properly. There was a study my old doc showed me last appointment that was 3 greater occipital nerve blocks in a 72 hr period w steroids as well as lidocaine did provide significant relief in the study pts. I’ll look for it. I’d try it see if they would do the 3 in 72 hr period. Here in the states insurance companies will only pay for one block every 2 weeks!


  10. Wow, I believe batch will say take Benadryl, check for infections. A friend did the same thing and he was walking around w bad bronchitis/ pneumonia. His D came up when the antibiotics were done...  let’s see if my prediction is right. 

    • Like 1

  11. No clogged nose stage.  My CH is not the same as your CH. my nose doesn’t do much for the majority of my CH. I’m getting 8-12 attacks a day.  The intensity isn’t always runny nose, clogged nose and eye pain. A lot of mine temporal head pain, neck pain. Then alternating in severity eye pain then head pain, then stabbing pain in the SPG. Then all at once or any combo of them. But clogged nose only happens if it’s a 10 and I can’t help but cry it hurts so bad. All Clusterheads are different!


  12. My CH is not the same as your CH. my nose doesn’t do much for the majority of my CH. I’m getting 8-12 attacks a day.  The intensity isn’t always runny nose, clogged nose and eye pain. A lot of mine temporal head pain, neck pain. Then alternating in severity eye pain then head pain, then stabbing pain in the SPG. Then all at once or any combo of them. But clogged nose only happens if it’s a 10 and I can’t help but cry it hurts so bad. All Clusterheads are different!


  13. Ewww, I have a perfect record turning down trips to the honky tonks. Lol. I did read about a new BBQ joint in the observer article I posted. It made me think twice about going there. I think it was in Farmersbranch in an unassuming location.  I’ll have to find it again. Do you do pizza and beer DD?  Enos in Bishops arts district could be a cool outing. 


  14. Unfortunately many people have posted about diets here. Be it keto diets or histamine free diets, some have said it helped them. However, some times it’s just coincidence. Spontaneous remissions do happen to episodic and chronics. It’s rare, but I am skeptical. Like Dana says it’s no cure but may have been a trigger for you. We all have different triggers. If you want to see how many people found a cure only to find out it wasn’t search  in the search field for “cure”. Start with the oldest post and read to current. There are over 25 pages of cures. I hope to god you never get another CH. but please don’t use the word cure here. Thank you for sharing hopefully it helps someone else. 

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