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Posts posted by Freud

  1. @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. 

  2. 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...

  3. 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. 

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  4. 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...

  5. 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. 




    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..

  6. 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



  7. 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

  8. 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...

  9. 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. 



  10. Just make sure you flex your leg muscles while you sit. This keeps the venous blood moving and helps prevent DVTs and thus PEs.  Stay on the aspirin for sure. I’m also fairly certain you’re getting up and moving around. This is paramount to preventing DVT/PE.  You mentioned you thought you found your D sweet spot, what was it? I hope you can get yourself to that sweet spot real soon. God knows you deserve a break from the CCH at s minimum  to just rehab and recover. 

    Pain free wishes! And a speedy rehab/ recovery!


  11. Hmm, that happened to me once, but then it allowed me to message him. He will see this post where i tagged his name. He pretty much looks at every vit D post as well. Give him a little time, he’s kind of off grid with limited internet access atm. 

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