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Everything posted by Freud

  1. Um, He couldn’t state enough how he thinks the conference is going to be life changing for me and every CH patient especially CCH. Should attend at least once. He thought I have been dealing w CCH a longer than 2 years and said “Oh man, you’re still new at this.” He stayed several times he would like to spend time with me st the conference and talk more. He said he has several veterans he wants me to meet and would introduce me. He mentioned a few of you guys. He said although the emgality data wasn’t that good for CCH he does have a few patients that have responded. And not just w reduction of CCH. He said “home runs” like he hopes for me. He wants to get me back to work ASAP. He was very supportive of @Batch‘s work and told me to keep following his lead. Don’t wait keep busting. Don’t wait on emgality, start it now. It takes some time to get. Insurance rejects it, he appeals, they reject again, he contacts Lilly and gets me in some kind of free program. I don’t have to do a thing but wait my old doc didn’t know or do any of that. Just wrote the script (the wrong one I might add(I never tried to fill it)). He is concerned about me making it to Dallas on a plane. Offered me prednisone to start before I go. I told him they didn’t do a thing for me the first time I tried them and with a couple of board members having hips done recently I’d pass. My plan is to use the max amount of trex I can a day (4 zembrace) if needed and pay for it later... especially on the plane. But my friend who came with me told him “he’s tough as nails and wouldn’t have a problem. I would get there fine.” I drive during kip 8-10s. I try and not drive w 10s. But some times it happens. I keep a M tank in my cars. Some times it works some times it doesn’t. My first CH was a 3 hr kip 10 30 min into a 3.5 hr drive... it’s not for everyone and not too many people have had 25% burns... I just have to maintain some kind of life... I can’t operate/ work with one but I’m thinking about switching to the dark side for a while and doing something in industry... have to give this D more time to kick in but if all I have is some kip 4/5s and I can get a little more sleep than I have been I could do an industry job. Think thats basically it... i forgot to ask how long it might take to see results w emgality. Will find out in Dallas when we talk again. Unlike most docs he wants to leave my f/u appointment up in the air and corresponding with him him sending him updates would be more than sufficient for now. He can refill my ketamine electronically as well as the emgality when I get it... fyi to anyone getting ketamine nasal spray. Price varies a lot. I’ve been quoted $225 for the full script as well as 60$. It’s a slimey world out there. One place said “it would be cheaper for you to get it off the street!” I just hung up I will make a post about my early experience w the ketamine from strength of script, what you need to have your doctor order as well as how it helps me and all it entails... sorry to hijack this thread but I don’t want to make a post titled my appointment w dr... just seems strange to me
  2. So folks apparently there is a lot of confusion about the dosage. From the horses mouth: Dr McGeeney said the correct and only dose for CH is 300mg a month every month. He said everything else is only for migraines! He said the correct info is on their site if you look in the right place. My previous doc wrote the wrong script as well and he was a major headache center guru! I never tried to fill it. I have started the process to get it... let y’all know when/ if I try it. I say if cause I’m pretty sure the D is starting to work! I’m not PF but it’s a hell of a lot better yesterday and today. Today was the last dose of my second load w target 25(OH)D3 of 140!
  3. Now I’m really confused may be the 3 injections wasn’t crazy. I know I read 2 a while back and my doc said 2 then 1 every month after... we shall find out tomorrow.
  4. Bravo @Batch, Its like explaining a cardiopulmonary bypass strategy... enjoyed the physiology. I have a real hard time hyperventilating. And for me when I force myself to do it. Usually an hour after my normal routine of using a regular old non rebreather mask and I’m at the I’ll try anything point. I break out the opti with the mouth piece and do the whole routine. Each method and no response. Well no more than if I go back and just breath the 25LPM gas. Now I know what you’re going to say next. You waited too long. But I have done it as a first line for over a month and I get the same results. So I stay comfortable, breath at a fast rate w my plane Jane mask and if the O2 is going to work I abort in 2-3 min stay on for 10-15. Unless I fall asleep and sleep through my timer. Lol did that last night. Ran through a fresh M tank. Fortunately I don’t have COPD w CO2 retention... But 99% of my nocturnal CH alarm clock attacks (every 45-60min) respond quickly and abort. Few of the nocturnal attacks that wake me up already at a kip 10 and no 1-3min ramp up take 30-45min to break if they break. But the longer I’ve been CCH I wake up before the CH starts! And I’m like hmm I don’t have to pee WTF did I wake up for. Then I try to go back to sleep and then the ramp up starts. It’s real strange. So when I’m alert enough to know what’s going on. If I wake up suddenly I just hit the O2 for 10 min and go back to sleep. I know sience as well well as friends w CH say hyperventilating is the way to go as well as the beautiful opti mask is superior (I love the way it feels on my face but they purposely don’t want you to fall asleep w the mask on and I get it. I want to lie back and breath or pace and breath. Not hold a mask or mouth piece. Every bit of comfort helps when I’m mid hit which is most of the day. TLDR: Thanks for the post Batch, I support and suggest all of your suggestions to other CHers. But it doesn’t make a damn of a difference to me sadly. I’m just not responding normally to any of the treatments but they still help a ton I guess the next step for me is a 30-40Lpm reg...Apria is going to love that lol Unrelated note our greek friend’s GF is pain free after starting the D program and Benadryl. I asked her to fill out the survey and post about it... she is CCH too =-)
  5. And thanks for the emgality update. I’m seeing bostonheadachedoc tomorrow and we’re going to talk about emgality. I’m pretty sure you’re not on the right dose. It’s a double injection first dose and one injection every month there after. My former doc said it can take months to work so don’t give up yet. All this info is based on his edu of me as well as a little reading. But I’ve heard docs writing it all kinds of crazy ways. 3 injections the first month... I’ll get to the bottom of this tomorrow, I’m fairly certain BHD was one of the investigators/ sites but I could be completely wrong. He may have just had patients enrolled in the study...
  6. Hey buddy PM me your info. I can spare an M tank or two, you got a regulator? I’m a bit south. In Central NJ but I can meet up on Thursday if that works for you. Brian
  7. I’m out of likes for the day =-( but @Dan32 brought up a very good point. There are mixed feelings here about verapamil. Most of the regular contributors here have tried it at some point. I was on 800mg a day until I stopped it months ago. It is important to get an EKG every time they raise your dose as well as check your blood pressure. I tolerated up to 800mg any more gave me blurry vision. I was about to wean it off when my Ch started to get worse I decided not to change anything. But i was fairly sure it wasn’t doing me any good. I now get hit all day and every hour I’m sleeping. But I did get a side effect called calcium channel blocker released peripheral edema. Additionally bc I was in such an “over dose” my cardiologists words ( my neuro insisted on a cardiology follow up after raising each dose when I got above 300+mg a day) I got anasarca it total body swelling. I knew my stomach was getting bigger but I thought the wet gain was from another drug. One day I looked down at my belly. Hopped on a scale and I gained over 15lb in a few months. Next day my legs blew up like balloons. Called my cardio we rapidly weaned the verapamil half way, then titrated it off over the next couple of weeks. Edema left w a little help of Lasix and I was back to normal in no time. But there are many folks it works miracles for. Like batches D protocol mentioned above. Everyone is different and our CHs change all the time. A little experimentation is in order. I should also warn you verapamil has been a potent blocker for some folks that try to bust. So if you want to try busting. Many of our first line treatments. Don’t start the verapamil yet. Don’t be afraid to discuss all these options give your doc this website and encourage them to take a good look. There is a busting/ mm study that just finished up at Yale. And a study in Switzerland enrolling patients for an LSD study. Busting is a safe (for most read precautions) and effective way to either prevent s cycle or abort one. Hit the blue button at the top of the screen...
  8. There is a Dr (not in my opinion) that touts surgery like this guy in South Africa. I’d stay far away as pebbles alluded.
  9. @Dallas Denny you doing the shoe box dub tubs? BRF to bulk?
  10. The MRI will rule out anatomical anomalies that cause CH like pain. Your Ch is considered chronic if you go a year with no more than a 3 week break. A few things to get this rolling. First imitrex pills are next to worth less. Try and get the imitrex injections. It’s best to get the 6mg shots and break them down so you get 2-3 doses per injection. The injectors stop a CH in 5-15min. You should have oxygen as well. It’s a life saver. Often aborts an attack in 3-10min. Lastly the extended release verapamil is not as favorable as using the 80mg immediate release tabs. But if it’s working for you then great. Also @Batch has a vitamin D protocol that has helped a lot of people.
  11. The start of a cycle or the disorder itself presents in many different ways. I’m chronic so I can tell you what happened to me when it first started. I had attacks of severe tooth pain for about 4-6weeks on and off. A little facial pain as well. Then out of no where I got struck while driving alone on a 3 hr trip about 30min into it. It was a full blown kip 10. I knew either an aneurysm was about to rupture or I was having my first CH (I’m a PA and had briefly studied headaches while in school). Since then I’ve had CHs every day... I did get a 2 month brake before I was put on a med that was a blocker and had a long half life... but when my CH came back they just started full throttle. Many people report a ramp up when they start as well as associated symptoms with out a CH like my tooth pain. Sinus pain/ pressure, facial pain, eye and scalp pain. Then some time later (days to weeks) the CHs start.
  12. @CHfather I totally agree it’s easy to get side tracked or forget to ask or tell a doc something when you are finally getting answers when you’ve been suffering. I didn’t know it was mandatory for a Dx of HC. I only know a little bit about the non CH TACs. We didn’t even covered all the TACs in PA school or on my board reviews. Only CH was briefly mentioned and most of the time on HA was spent on migraines.
  13. Yea, a GP making a diagnosis of atypical CH when your HAs are all day puzzles me a little. Go armed with a print out of what HC is. Most neuros let alone GPs haven’t heard of most of the TACs. On another note did he prescribe oxygen? CH usually responds to high flow O2 and HC does not...
  14. Refresh my memory, but weren’t you saying the headaches come and last the whole day with no breaks? That sounds like a dead ringer to me for hemiacrania continua. Also mimic some CHs. Did the doc have a reason why the doc thought it was CH and not HC? It still may be worth trying the indomethacin. A small group of CH patients respond to it according to my old CH doc.
  15. Busting! The blue button above is a good place to start.
  16. I some times wake up before they really hit and I have that funny sensations like I say is this a CH? Or did I have to pee or something. I’ve learned I’m never wrong, if I have a feeling like it’s going to happen it does... so I abort those w oxygen real fast 2-3 min. Stay on for 10min. Have you tried using oxygen on them. I’d try increasing your verapamil dose by 80mg to see if you’re kind of just at a threshold dose and that finishes it off. Otherwise if you were busting I’d say you’re close to beating the beast...
  17. Better results than emgality! good research my friend!
  18. Sorry my post was late to upload. What CHf says....!
  19. Ok kat, i did a little research to refresh my memory on HC and your brief description sounds like a dead ringer to me (I am also a PA although neuro is not my speciality...) look here (it’s a wiki but I think it’s fairly accurate to get started):Wiki for HC the great news is the primary treatment for HC is an old NSAID called indomethacin. Your pcp should be more than comfortable using it. It is rather harsh on the stomach so it should be taken with food and you’re going to want them to write for Prescription strength Zantac or other H2 blocker or proton pump inhibitor of their choice. Please don’t over look that it’s imperative to keep the indomethacin from causing ulcers when taken for extended periods of time. If I was you I’d be happy. HC is much easier to control than CH. I don’t think the vitamin D protocol has been studied in HC patients, may be start by getting a level and loading from there. Batch’s protocol is good for a host of reasons and most people are vitamin D deficient. Hope this helps. Brian ps print out some info info on HC to bring to your doc. Most GPs don’t know anything about it. Unless you see a headache specialist I imagine most neurons won’t be familiar with most of the TACs..
  20. Hmm, so the pain is always there but worsens at 3-4 times a day? Is that correct? There are other TACs trigeminal autonomic cephalgias that are CH look alikes HC is the one I hear talked about the most and you may want to look into if your headache is constant w peaks. Hemicrania continua (so May be off). I have to run but I’ll try and send another reply later today. Pain free wishes Brian
  21. Please please find a new doctor there has to be a primary care doc you can go to educated about clusters if that’s what you have and get proper support. You must get the lab tests don’t if you’re going to do batch’s protocol. But first please tell us what you’re experiencing so we can better help you. Does your nose run or get stuffy when these attacks occur. They should probably feel more like an attack and less like a headache. Where is the pain located? Does your eye get puffy, tear, get red? Any tooth jaw or facial pain associated with these attacks? How long do the attacks last? How many a day? Do they wake you up out of sleep? Do you get more active when they occur and do things like rock/shake, pace? What does the eye pain feel like, is it only during an attack? That will get us started. You have several things you can do to help. The vitamin D program is a great place to start but as I said you will need some sort of supportive doctor to get labs done. I really hope you’re not in a one dr town and can change. Anything is better than a doc that won’t give you a correct diagnosis if you have CH. plus every CH patient needs their brain scanned to rule out other treatable causes (aneurysms...). Looking forward to your reply
  22. It is probably a prescription item that you would get at a compounding pharmacy. I have had SPG nerve blocks done w viscous lidocaine gel dropped down a long q tip in my nose. The doc asked me if I wanted to do it myself at home. But I wasn’t interested in putting this long q tip way back in my sinuses. If it had worked better I would have said yes...
  23. You got my night time hits the last 2 days! Sorry buddy wish I could take them back! Batch has been communicating with me fairly often so in my reply today I told him about what’s been going on w you. May be he has something to add. I have gotten a better day or two a few days after a dose but I’m hoping this is related to my D and not the L i took on wed. I’m holding off on busting now so I can see what the D is doing... feel better buddy. I hope that damn hip heals fast so you can at least get back to a cluster shuffle ASAP. Wishing you well and PF days ahead. Brian
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