FunTimes Posted August 9, 2019 Share Posted August 9, 2019 The last few weeks have been interesting for me and I just wanted to tell everyone what has been going on. I have been on Batches D3 for a long time now and I think I found my sweet spot towards the end of last month. I take everything on the list and had just upped the vitamin D 20,000 a day. I was down to 1 or 2 low level attacks a day. I had a doctors appointment on the 26th of July to go over my hip replacement and was told to stop taking the fish oil and vitamin K. 4 days later the clusters stopped.. Totally, no shadows, no pressure no nothing just pain free days. On August 5th I went in for the hip replacement crapping my pants that I was going to be hit non stop all day. To my surprise I did not have any clusters at all. I was told after surgery that I needed to stop the rest of the D3 vitamins because of blood clotting issues. I am allowed to take my Verapamil and they added a baby aspirin twice a day. On the 7th I had my first twinge of a cluster comin on so I grabbed my O2 and downed a 5hr energy drink, 10 minutes later it was gone. I was thinking maybe it was all in my mind and I would be fine.. Well every day since I have had 3 Clusters a day, low level pain and the longest one was only 30 minutes but they are coming back and getting stronger with every hit. The hip is doing fine other then the big bruise that feels like I was kicked in the thigh by a horse and I am limping around nicely. I was also told to stop smoking a week before the replacement and continue for 6 weeks after surgery. I was smoking 6 or 7 cigarillos a day and yesterday started back on that but only 1 a day so far. My question is this.. At what point do you think I can get back on the full vitamin D? I think this is what had me pain free for the few days around surgery, Do I take everything except the fish oil and K or do I take it all? Are the few clusters I am now getting due to the interrupted sleep and less stress of the surgery? I know nobody have a solid answer and no two people are the same but maybe someone has had a issue like this before. Any help, criticism or recommendations are welcome. Quote Link to comment Share on other sites More sharing options...
FunTimes Posted August 10, 2019 Author Share Posted August 10, 2019 I could not wait. Headaches ramped back up so I'm back to the D3. See what happens. Quote Link to comment Share on other sites More sharing options...
Freud Posted August 10, 2019 Share Posted August 10, 2019 (edited) 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! Edited August 10, 2019 by Freud Quote Link to comment Share on other sites More sharing options...
FunTimes Posted August 12, 2019 Author Share Posted August 12, 2019 (edited) Back to my comfy zone with 6 to 8 attacks a day.. Life is good again, I missed sucking down o2 tanks like glasses of water, I was tired of dusting the dam things off anyway. Day time is not to bad, nights suck hip is on the mend but hurts like a bitch when I need to move with a cluster. I can say that for me max hip pain is equal to kip6 cluster pain. After the cluster goes over kip6 I don't know about the hip pain anymore until after it is all over. Then I get to grab some ice for the hip, sit in a recliner wait for the fun time to start all over again! I just hope the added hits I am now getting are taken away from one of you out there. Once I can walk without a walker and use a cane I think I will hit the busting hard again. At least then maybe I can float around the house instead of hobble. AHHHH it's good to be home again! Edited August 19, 2019 by FunTimes Quote Link to comment Share on other sites More sharing options...
Freud Posted August 12, 2019 Share Posted August 12, 2019 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 Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted August 18, 2019 Share Posted August 18, 2019 Congrats on the hip. Just got mine 2 weeks before you. I believe the anesthetic agents used can help prevent clusters if used properly. Last year I had 4 procedures for a kidney stone and this year the hip. I asked them to use ketamine, propofol and steroids while waking up with high flow O2. Each time I awoke with the clearest head ever. THe Vit D likely had little to do with clotting or not clotting but at supra physiologic doses no one can say for sure. The evidence is largely antedocol. Almost always a surgeon will want you on as few supplements and meds as possible because its impossible to know all the potential interactions. Starting the D now probable wont create an adverse event. Late bleeds are infrequent and if you needed anticoagulation for other reasons you would have restarted by now. Freud is right on about stretching. This is paramount to long term success and becomes critical in the first few months post op. Particular attention should be directed to stretching the illiopsoas muscle and strengthening the glutes. THe general consensus is it can take up to a year to get full function back if you do the rehab work. Stay strong Quote Link to comment Share on other sites More sharing options...
FunTimes Posted August 19, 2019 Author Share Posted August 19, 2019 Pebbles How far along are you in recovering from the hip? I am on day 14 and just ditched the walker and using a cane only now but it still feels weak and tired. I am doing the stretching a few times a day and walking as much as I can every hour or so. I have about 40 stairs in my house and am now doing them a few times a day. I kind of thought I would be doing better then this at this point. I still have not gotten into a car as I fell that would hurt. I hope your doing well and the clusters are letting you heal without issue.. Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted August 19, 2019 Share Posted August 19, 2019 (edited) I'll be 6 weeks tomorrow. Walker for a day or so then a cane til I lost it (about 2 weeks) I can do stairs pretty well. Been driving since week 2 (left hip automatic car). Still can't ride a motorcycle. Went back o work week 4 post op. Headaches have not been an issue. I'm in about an 8 month remission. I tend to use low dose MM tincture when I get shadows and that works for me. Like all of us the beast acts in erratic, irrational debilitating ways so I am never sure if an intervention helps (MM, D3, steroids, amovig, etc) or if the cycle has run its course. I am reasonably confident #1 O2 properly used is an effective abortive for classic cluster headaches and #2 mushrooms saved my life. Edited August 19, 2019 by Pebblesthecorgi typo 2 Quote Link to comment Share on other sites More sharing options...
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